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How to improve our response to COVID’s mental tolls
We have no way of precisely knowing how many lives might have been saved, and how much grief and loneliness spared and economic ruin contained during COVID-19 if we had risen to its myriad challenges in a timely fashion. However, I feel we can safely say that the United States deserves to be graded with an “F” for its management of the pandemic.
To render this grade, we need only to read the countless verified reports of how critically needed public health measures were not taken soon enough, or sufficiently, to substantially mitigate human and societal suffering.
This began with the failure to protect doctors, nurses, and technicians, who did not have the personal protective equipment needed to prevent infection and spare risk to their loved ones. It soon extended to the country’s failure to adequately protect all its citizens and residents. COVID-19 then rained its grievous consequences disproportionately upon people of color, those living in poverty, and those with housing and food insecurity – those already greatly foreclosed from opportunities to exit from their circumstances.
We all have heard, “Fool me once, shame on you; fool me twice, shame on me.”
Bear witness, colleagues and friends: It will be our shared shame if we too continue to fail in our response to COVID-19. But failure need not happen because protecting ourselves and our country is a solvable problem; complex and demanding for sure, but solvable.
To battle trauma, we must first define it
The sine qua non of a disaster is its psychic and social trauma. I asked Maureen Sayres Van Niel, MD, chair of the American Psychiatric Association’s Minority and Underrepresented Caucus and a former steering committee member of the U.S. Preventive Services Task Force, to define trauma. She said, “It is [the product of] a catastrophic, unexpected event over which we have little control, with grave consequences to the lives and psychological functioning of those individuals and groups affected.”
The COVID-19 pandemic is a massively amplified traumatic event because of the virulence and contagious properties of the virus and its variants; the absence of end date on the horizon; its effect as a proverbial ax that disproportionately falls on the majority of the populace experiencing racial and social inequities; and the ironic yet necessary imperative to distance ourselves from those we care about and who care about us.
Four interdependent factors drive the magnitude of the traumatic impact of a disaster: the degree of exposure to the life-threatening event; the duration and threat of recurrence; an individual’s preexisting (natural and human-made) trauma and mental and addictive disorders; and the adequacy of family and fundamental resources such as housing, food, safety, and access to health care (the social dimensions of health and mental health). These factors underline the “who,” “what,” “where,” and “how” of what should have been (and continue to be) an effective public health response to the COVID-19 pandemic.
Yet existing categories that we have used to predict risk for trauma no longer hold. The gravity, prevalence, and persistence of COVID-19’s horrors erase any differences among victims, witnesses, and bystanders. Dr Sayres Van Niel asserts that we have a “collective, national trauma.” In April, the Kaiser Family Foundation’s Vaccine Monitor reported that 24% of U.S. adults had a close friend or family member who died of COVID-19. That’s 82 million Americans! Our country has eclipsed individual victimization and trauma because we are all in its maw.
Vital lessons from the past
In a previous column, I described my role as New York City’s mental health commissioner after 9/11 and the many lessons we learned during that multiyear process. Our work served as a template for other disasters to follow, such as Hurricane Sandy. Its value to COVID-19 is equally apparent.
We learned that those most at risk of developing symptomatic, functionally impairing mental illness had prior traumatic experiences (for example, from childhood abuse or neglect, violence, war, and forced displacement from their native land) and/or a preexisting mental or substance use disorder.
Once these individuals and communities were identified, we could prioritize their treatment and care. Doing so required mobilizing both inner and external (social) resources, which can be used before disaster strikes or in its wake.
For individuals, adaptive resources include developing any of a number of mind-body activities (for example, meditation, mindfulness, slow breathing, and yoga); sufficient but not necessarily excessive levels of exercise (as has been said, if exercise were a pill, it would be the most potent of medicines); nourishing diets; sleep, nature’s restorative state; and perhaps most important, attachment and human connection to people who care about you and whom you care about and trust.
This does not necessarily mean holding or following an institutional religion or belonging to house of worship (though, of course, that melds and augments faith with community). For a great many, myself included, there is spirituality, the belief in a greater power, which need not be a God yet instills a sense of the vastness, universality, and continuity of life.
For communities, adaptive resources include safe homes and neighborhoods; diminishing housing and food insecurity; education, including pre-K; employment, with a livable wage; ridding human interactions of the endless, so-called microaggressions (which are not micro at all, because they accrue) of race, ethnic, class, and age discrimination and injustice; and ready access to quality and affordable health care, now more than ever for the rising tide of mental and substance use disorders that COVID-19 has unleashed.
Every gain we make to ablate racism, social injustice, discrimination, and widely and deeply spread resource and opportunity inequities means more cohesion among the members of our collective tribe. Greater cohesion, a love for thy neighbor, and equity (in action, not polemics) will fuel the resilience we will need to withstand more of COVID-19’s ongoing trauma; that of other, inescapable disasters and losses; and the wear and tear of everyday life. The rewards of equity are priceless and include the dignity that derives from fairness and justice – given and received.
An unprecedented disaster requires a bold response
My, what a list. But to me, the encompassing nature of what’s needed means that we can make differences anywhere, everywhere, and in countless and continuous ways.
The measure of any society is in how it cares for those who are foreclosed, through no fault of their own, from what we all want: a life safe from violence, secure in housing and food, with loving relationships and the pride that comes of making contributions, each in our own, wonderfully unique way.
Where will we all be in a year, 2, or 3 from now? Prepared, or not? Emotionally inoculated, or not? Better equipped, or not? As divided, or more cohesive?
Well, I imagine that depends on each and every one of us.
Lloyd I. Sederer, MD, is a psychiatrist, public health doctor, and writer. He is an adjunct professor at the Columbia University School of Public Health, director of Columbia Psychiatry Media, chief medical officer of Bongo Media, and chair of the advisory board of Get Help. He has been chief medical officer of McLean Hospital, a Harvard teaching hospital; mental health commissioner of New York City (in the Bloomberg administration); and chief medical officer of the New York State Office of Mental Health, the nation’s largest state mental health agency.
A version of this article first appeared on Medscape.com.
We have no way of precisely knowing how many lives might have been saved, and how much grief and loneliness spared and economic ruin contained during COVID-19 if we had risen to its myriad challenges in a timely fashion. However, I feel we can safely say that the United States deserves to be graded with an “F” for its management of the pandemic.
To render this grade, we need only to read the countless verified reports of how critically needed public health measures were not taken soon enough, or sufficiently, to substantially mitigate human and societal suffering.
This began with the failure to protect doctors, nurses, and technicians, who did not have the personal protective equipment needed to prevent infection and spare risk to their loved ones. It soon extended to the country’s failure to adequately protect all its citizens and residents. COVID-19 then rained its grievous consequences disproportionately upon people of color, those living in poverty, and those with housing and food insecurity – those already greatly foreclosed from opportunities to exit from their circumstances.
We all have heard, “Fool me once, shame on you; fool me twice, shame on me.”
Bear witness, colleagues and friends: It will be our shared shame if we too continue to fail in our response to COVID-19. But failure need not happen because protecting ourselves and our country is a solvable problem; complex and demanding for sure, but solvable.
To battle trauma, we must first define it
The sine qua non of a disaster is its psychic and social trauma. I asked Maureen Sayres Van Niel, MD, chair of the American Psychiatric Association’s Minority and Underrepresented Caucus and a former steering committee member of the U.S. Preventive Services Task Force, to define trauma. She said, “It is [the product of] a catastrophic, unexpected event over which we have little control, with grave consequences to the lives and psychological functioning of those individuals and groups affected.”
The COVID-19 pandemic is a massively amplified traumatic event because of the virulence and contagious properties of the virus and its variants; the absence of end date on the horizon; its effect as a proverbial ax that disproportionately falls on the majority of the populace experiencing racial and social inequities; and the ironic yet necessary imperative to distance ourselves from those we care about and who care about us.
Four interdependent factors drive the magnitude of the traumatic impact of a disaster: the degree of exposure to the life-threatening event; the duration and threat of recurrence; an individual’s preexisting (natural and human-made) trauma and mental and addictive disorders; and the adequacy of family and fundamental resources such as housing, food, safety, and access to health care (the social dimensions of health and mental health). These factors underline the “who,” “what,” “where,” and “how” of what should have been (and continue to be) an effective public health response to the COVID-19 pandemic.
Yet existing categories that we have used to predict risk for trauma no longer hold. The gravity, prevalence, and persistence of COVID-19’s horrors erase any differences among victims, witnesses, and bystanders. Dr Sayres Van Niel asserts that we have a “collective, national trauma.” In April, the Kaiser Family Foundation’s Vaccine Monitor reported that 24% of U.S. adults had a close friend or family member who died of COVID-19. That’s 82 million Americans! Our country has eclipsed individual victimization and trauma because we are all in its maw.
Vital lessons from the past
In a previous column, I described my role as New York City’s mental health commissioner after 9/11 and the many lessons we learned during that multiyear process. Our work served as a template for other disasters to follow, such as Hurricane Sandy. Its value to COVID-19 is equally apparent.
We learned that those most at risk of developing symptomatic, functionally impairing mental illness had prior traumatic experiences (for example, from childhood abuse or neglect, violence, war, and forced displacement from their native land) and/or a preexisting mental or substance use disorder.
Once these individuals and communities were identified, we could prioritize their treatment and care. Doing so required mobilizing both inner and external (social) resources, which can be used before disaster strikes or in its wake.
For individuals, adaptive resources include developing any of a number of mind-body activities (for example, meditation, mindfulness, slow breathing, and yoga); sufficient but not necessarily excessive levels of exercise (as has been said, if exercise were a pill, it would be the most potent of medicines); nourishing diets; sleep, nature’s restorative state; and perhaps most important, attachment and human connection to people who care about you and whom you care about and trust.
This does not necessarily mean holding or following an institutional religion or belonging to house of worship (though, of course, that melds and augments faith with community). For a great many, myself included, there is spirituality, the belief in a greater power, which need not be a God yet instills a sense of the vastness, universality, and continuity of life.
For communities, adaptive resources include safe homes and neighborhoods; diminishing housing and food insecurity; education, including pre-K; employment, with a livable wage; ridding human interactions of the endless, so-called microaggressions (which are not micro at all, because they accrue) of race, ethnic, class, and age discrimination and injustice; and ready access to quality and affordable health care, now more than ever for the rising tide of mental and substance use disorders that COVID-19 has unleashed.
Every gain we make to ablate racism, social injustice, discrimination, and widely and deeply spread resource and opportunity inequities means more cohesion among the members of our collective tribe. Greater cohesion, a love for thy neighbor, and equity (in action, not polemics) will fuel the resilience we will need to withstand more of COVID-19’s ongoing trauma; that of other, inescapable disasters and losses; and the wear and tear of everyday life. The rewards of equity are priceless and include the dignity that derives from fairness and justice – given and received.
An unprecedented disaster requires a bold response
My, what a list. But to me, the encompassing nature of what’s needed means that we can make differences anywhere, everywhere, and in countless and continuous ways.
The measure of any society is in how it cares for those who are foreclosed, through no fault of their own, from what we all want: a life safe from violence, secure in housing and food, with loving relationships and the pride that comes of making contributions, each in our own, wonderfully unique way.
Where will we all be in a year, 2, or 3 from now? Prepared, or not? Emotionally inoculated, or not? Better equipped, or not? As divided, or more cohesive?
Well, I imagine that depends on each and every one of us.
Lloyd I. Sederer, MD, is a psychiatrist, public health doctor, and writer. He is an adjunct professor at the Columbia University School of Public Health, director of Columbia Psychiatry Media, chief medical officer of Bongo Media, and chair of the advisory board of Get Help. He has been chief medical officer of McLean Hospital, a Harvard teaching hospital; mental health commissioner of New York City (in the Bloomberg administration); and chief medical officer of the New York State Office of Mental Health, the nation’s largest state mental health agency.
A version of this article first appeared on Medscape.com.
We have no way of precisely knowing how many lives might have been saved, and how much grief and loneliness spared and economic ruin contained during COVID-19 if we had risen to its myriad challenges in a timely fashion. However, I feel we can safely say that the United States deserves to be graded with an “F” for its management of the pandemic.
To render this grade, we need only to read the countless verified reports of how critically needed public health measures were not taken soon enough, or sufficiently, to substantially mitigate human and societal suffering.
This began with the failure to protect doctors, nurses, and technicians, who did not have the personal protective equipment needed to prevent infection and spare risk to their loved ones. It soon extended to the country’s failure to adequately protect all its citizens and residents. COVID-19 then rained its grievous consequences disproportionately upon people of color, those living in poverty, and those with housing and food insecurity – those already greatly foreclosed from opportunities to exit from their circumstances.
We all have heard, “Fool me once, shame on you; fool me twice, shame on me.”
Bear witness, colleagues and friends: It will be our shared shame if we too continue to fail in our response to COVID-19. But failure need not happen because protecting ourselves and our country is a solvable problem; complex and demanding for sure, but solvable.
To battle trauma, we must first define it
The sine qua non of a disaster is its psychic and social trauma. I asked Maureen Sayres Van Niel, MD, chair of the American Psychiatric Association’s Minority and Underrepresented Caucus and a former steering committee member of the U.S. Preventive Services Task Force, to define trauma. She said, “It is [the product of] a catastrophic, unexpected event over which we have little control, with grave consequences to the lives and psychological functioning of those individuals and groups affected.”
The COVID-19 pandemic is a massively amplified traumatic event because of the virulence and contagious properties of the virus and its variants; the absence of end date on the horizon; its effect as a proverbial ax that disproportionately falls on the majority of the populace experiencing racial and social inequities; and the ironic yet necessary imperative to distance ourselves from those we care about and who care about us.
Four interdependent factors drive the magnitude of the traumatic impact of a disaster: the degree of exposure to the life-threatening event; the duration and threat of recurrence; an individual’s preexisting (natural and human-made) trauma and mental and addictive disorders; and the adequacy of family and fundamental resources such as housing, food, safety, and access to health care (the social dimensions of health and mental health). These factors underline the “who,” “what,” “where,” and “how” of what should have been (and continue to be) an effective public health response to the COVID-19 pandemic.
Yet existing categories that we have used to predict risk for trauma no longer hold. The gravity, prevalence, and persistence of COVID-19’s horrors erase any differences among victims, witnesses, and bystanders. Dr Sayres Van Niel asserts that we have a “collective, national trauma.” In April, the Kaiser Family Foundation’s Vaccine Monitor reported that 24% of U.S. adults had a close friend or family member who died of COVID-19. That’s 82 million Americans! Our country has eclipsed individual victimization and trauma because we are all in its maw.
Vital lessons from the past
In a previous column, I described my role as New York City’s mental health commissioner after 9/11 and the many lessons we learned during that multiyear process. Our work served as a template for other disasters to follow, such as Hurricane Sandy. Its value to COVID-19 is equally apparent.
We learned that those most at risk of developing symptomatic, functionally impairing mental illness had prior traumatic experiences (for example, from childhood abuse or neglect, violence, war, and forced displacement from their native land) and/or a preexisting mental or substance use disorder.
Once these individuals and communities were identified, we could prioritize their treatment and care. Doing so required mobilizing both inner and external (social) resources, which can be used before disaster strikes or in its wake.
For individuals, adaptive resources include developing any of a number of mind-body activities (for example, meditation, mindfulness, slow breathing, and yoga); sufficient but not necessarily excessive levels of exercise (as has been said, if exercise were a pill, it would be the most potent of medicines); nourishing diets; sleep, nature’s restorative state; and perhaps most important, attachment and human connection to people who care about you and whom you care about and trust.
This does not necessarily mean holding or following an institutional religion or belonging to house of worship (though, of course, that melds and augments faith with community). For a great many, myself included, there is spirituality, the belief in a greater power, which need not be a God yet instills a sense of the vastness, universality, and continuity of life.
For communities, adaptive resources include safe homes and neighborhoods; diminishing housing and food insecurity; education, including pre-K; employment, with a livable wage; ridding human interactions of the endless, so-called microaggressions (which are not micro at all, because they accrue) of race, ethnic, class, and age discrimination and injustice; and ready access to quality and affordable health care, now more than ever for the rising tide of mental and substance use disorders that COVID-19 has unleashed.
Every gain we make to ablate racism, social injustice, discrimination, and widely and deeply spread resource and opportunity inequities means more cohesion among the members of our collective tribe. Greater cohesion, a love for thy neighbor, and equity (in action, not polemics) will fuel the resilience we will need to withstand more of COVID-19’s ongoing trauma; that of other, inescapable disasters and losses; and the wear and tear of everyday life. The rewards of equity are priceless and include the dignity that derives from fairness and justice – given and received.
An unprecedented disaster requires a bold response
My, what a list. But to me, the encompassing nature of what’s needed means that we can make differences anywhere, everywhere, and in countless and continuous ways.
The measure of any society is in how it cares for those who are foreclosed, through no fault of their own, from what we all want: a life safe from violence, secure in housing and food, with loving relationships and the pride that comes of making contributions, each in our own, wonderfully unique way.
Where will we all be in a year, 2, or 3 from now? Prepared, or not? Emotionally inoculated, or not? Better equipped, or not? As divided, or more cohesive?
Well, I imagine that depends on each and every one of us.
Lloyd I. Sederer, MD, is a psychiatrist, public health doctor, and writer. He is an adjunct professor at the Columbia University School of Public Health, director of Columbia Psychiatry Media, chief medical officer of Bongo Media, and chair of the advisory board of Get Help. He has been chief medical officer of McLean Hospital, a Harvard teaching hospital; mental health commissioner of New York City (in the Bloomberg administration); and chief medical officer of the New York State Office of Mental Health, the nation’s largest state mental health agency.
A version of this article first appeared on Medscape.com.
Addressing an uncharted front in the war on COVID-19: Vaccination during pregnancy
In December 2020, the US Food and Drug Administration’s Emergency Use Authorization of the first COVID-19 vaccine presented us with a new tactic in the war against SARS-COV-2—and a new dilemma for obstetricians. What we had learned about COVID-19 infection in pregnancy by that point was alarming. While the vast majority (>90%) of pregnant women who contract COVID-19 recover without requiring hospitalization, pregnant women are at increased risk for severe illness and mechanical ventilation when compared with their nonpregnant counterparts.1 Vertical transmission to the fetus is a rare event, but the increased risk of preterm birth, miscarriage, and preeclampsia makes the fetus a second victim in many cases.2 Moreover, much is still unknown about the long-term impact of severe illness on maternal and fetal health.
Gaining vaccine approval
The COVID-19 vaccine, with its high efficacy rates in the nonpregnant adult population, presents an opportunity to reduce maternal morbidity related to this devastating illness. But unlike other vaccines, such as the flu shot and TDAP, results from prospective studies on COVID-19 vaccination of expectant women are pending. Under the best of circumstances, gaining acceptance of any vaccine during pregnancy faces barriers such as vaccine hesitancy and a general concern from pregnant women about the effect of medical interventions on the fetus. There is no reason to expect that either the mRNA vaccines or the replication-incompetent adenovirus recombinant vector vaccine could cause harm to the developing fetus, but the fact that currently available COVID-19 vaccines use newer technologies complicates the decision for many women.
Nevertheless, what we do know now is much more than we did in December, particularly when it comes to the mRNA vaccines. To date, observational studies of women who received the mRNA vaccine in pregnancy have shown no increased risk of adverse maternal, fetal, or obstetric outcomes.3 Emerging data also indicate that antibodies to the SARS-CoV-2 spike protein—the target of all 3 vaccines—is present in cord blood, potentially protecting the infant in the first months of life from contracting COVID-19 if the mother receives the vaccine during pregnancy.4,5
Our approach to counseling
How can we best help our patients navigate the risks and benefits of the COVID-19 vaccine? First, by acknowledging the obvious: We are in the midst of a pandemic with high rates of community spread, which makes COVID-19 different from any other vaccine-preventable disease at this time. Providing patients with a structure for making an educated decision is essential, taking into account (1) what we know about COVID-19 infection during pregnancy, (2) what we know about vaccine efficacy and safety to date, and (3) individual factors such as:
- The presence of comorbidities such as obesity, heart disease, respiratory disease, and diabetes.
- Potential exposures—“Do you have children in school or daycare? Do childcare providers or other workers come to your home? What is your occupation?”
- The ability to take precautions (social distancing, wearing a mask, etc)
All things considered, the decision to accept the COVID-19 vaccine or not ultimately belongs to the patient. Given disease prevalence and the latest information on vaccine safety in pregnancy, I have been advising my patients in the second trimester or beyond to receive the vaccine with the caveat that delaying the vaccine until the postpartum period is a completely valid alternative. The most important gift we can offer our patients is to arm them with the necessary information so that they can make the choice best for them and their family as we continue to fight this war on COVID-19.
- Allotey J, Stallings E, Bonet M, et al. Clinical manifestations, risk factors and maternal and perinatal outcomes of coronavirus disease 2019 in pregnancy: living systematic review and meta-analysis. BMJ. 2020;370:m3320. doi: 10.1136/bmj.m3320.
- Soheili M, Moradi G, Baradaran HR, et al. Clinical manifestation and maternal complications and neonatal outcomes in pregnant women with COVID-19: a comprehensive evidence synthesis and meta-analysis. J Matern Fetal Neonatal Med. February 18, 2021. doi: 10.1080/14767058.2021.1888923.
- Shimabukuro TT, Kim SY, Myers TR, et al. Preliminary findings of mRNA Covid-19 vaccine safety in pregnant persons. N Engl J Med. April 21, 2021. doi: 10.1056/NEJMoa2104983.
- Mithal LB, Otero S, Shanes ED, et al. Cord blood antibodies following maternal COVID-19 vaccination during pregnancy. Am J Obstet Gynecol. 2021;S0002-9378(21)00215-5. doi: 10.1016/j.ajog.2021.03.035.
- Rottenstreich A, Zarbiv G, Oiknine-Djian E, et al. Efficient maternofetal transplacental transfer of anti- SARS-CoV-2 spike antibodies after antenatal SARS-CoV-2 BNT162b2 mRNA vaccination. Clin Infect Dis. 2021;ciab266. doi: 10.1093/cid/ciab266.
In December 2020, the US Food and Drug Administration’s Emergency Use Authorization of the first COVID-19 vaccine presented us with a new tactic in the war against SARS-COV-2—and a new dilemma for obstetricians. What we had learned about COVID-19 infection in pregnancy by that point was alarming. While the vast majority (>90%) of pregnant women who contract COVID-19 recover without requiring hospitalization, pregnant women are at increased risk for severe illness and mechanical ventilation when compared with their nonpregnant counterparts.1 Vertical transmission to the fetus is a rare event, but the increased risk of preterm birth, miscarriage, and preeclampsia makes the fetus a second victim in many cases.2 Moreover, much is still unknown about the long-term impact of severe illness on maternal and fetal health.
Gaining vaccine approval
The COVID-19 vaccine, with its high efficacy rates in the nonpregnant adult population, presents an opportunity to reduce maternal morbidity related to this devastating illness. But unlike other vaccines, such as the flu shot and TDAP, results from prospective studies on COVID-19 vaccination of expectant women are pending. Under the best of circumstances, gaining acceptance of any vaccine during pregnancy faces barriers such as vaccine hesitancy and a general concern from pregnant women about the effect of medical interventions on the fetus. There is no reason to expect that either the mRNA vaccines or the replication-incompetent adenovirus recombinant vector vaccine could cause harm to the developing fetus, but the fact that currently available COVID-19 vaccines use newer technologies complicates the decision for many women.
Nevertheless, what we do know now is much more than we did in December, particularly when it comes to the mRNA vaccines. To date, observational studies of women who received the mRNA vaccine in pregnancy have shown no increased risk of adverse maternal, fetal, or obstetric outcomes.3 Emerging data also indicate that antibodies to the SARS-CoV-2 spike protein—the target of all 3 vaccines—is present in cord blood, potentially protecting the infant in the first months of life from contracting COVID-19 if the mother receives the vaccine during pregnancy.4,5
Our approach to counseling
How can we best help our patients navigate the risks and benefits of the COVID-19 vaccine? First, by acknowledging the obvious: We are in the midst of a pandemic with high rates of community spread, which makes COVID-19 different from any other vaccine-preventable disease at this time. Providing patients with a structure for making an educated decision is essential, taking into account (1) what we know about COVID-19 infection during pregnancy, (2) what we know about vaccine efficacy and safety to date, and (3) individual factors such as:
- The presence of comorbidities such as obesity, heart disease, respiratory disease, and diabetes.
- Potential exposures—“Do you have children in school or daycare? Do childcare providers or other workers come to your home? What is your occupation?”
- The ability to take precautions (social distancing, wearing a mask, etc)
All things considered, the decision to accept the COVID-19 vaccine or not ultimately belongs to the patient. Given disease prevalence and the latest information on vaccine safety in pregnancy, I have been advising my patients in the second trimester or beyond to receive the vaccine with the caveat that delaying the vaccine until the postpartum period is a completely valid alternative. The most important gift we can offer our patients is to arm them with the necessary information so that they can make the choice best for them and their family as we continue to fight this war on COVID-19.
In December 2020, the US Food and Drug Administration’s Emergency Use Authorization of the first COVID-19 vaccine presented us with a new tactic in the war against SARS-COV-2—and a new dilemma for obstetricians. What we had learned about COVID-19 infection in pregnancy by that point was alarming. While the vast majority (>90%) of pregnant women who contract COVID-19 recover without requiring hospitalization, pregnant women are at increased risk for severe illness and mechanical ventilation when compared with their nonpregnant counterparts.1 Vertical transmission to the fetus is a rare event, but the increased risk of preterm birth, miscarriage, and preeclampsia makes the fetus a second victim in many cases.2 Moreover, much is still unknown about the long-term impact of severe illness on maternal and fetal health.
Gaining vaccine approval
The COVID-19 vaccine, with its high efficacy rates in the nonpregnant adult population, presents an opportunity to reduce maternal morbidity related to this devastating illness. But unlike other vaccines, such as the flu shot and TDAP, results from prospective studies on COVID-19 vaccination of expectant women are pending. Under the best of circumstances, gaining acceptance of any vaccine during pregnancy faces barriers such as vaccine hesitancy and a general concern from pregnant women about the effect of medical interventions on the fetus. There is no reason to expect that either the mRNA vaccines or the replication-incompetent adenovirus recombinant vector vaccine could cause harm to the developing fetus, but the fact that currently available COVID-19 vaccines use newer technologies complicates the decision for many women.
Nevertheless, what we do know now is much more than we did in December, particularly when it comes to the mRNA vaccines. To date, observational studies of women who received the mRNA vaccine in pregnancy have shown no increased risk of adverse maternal, fetal, or obstetric outcomes.3 Emerging data also indicate that antibodies to the SARS-CoV-2 spike protein—the target of all 3 vaccines—is present in cord blood, potentially protecting the infant in the first months of life from contracting COVID-19 if the mother receives the vaccine during pregnancy.4,5
Our approach to counseling
How can we best help our patients navigate the risks and benefits of the COVID-19 vaccine? First, by acknowledging the obvious: We are in the midst of a pandemic with high rates of community spread, which makes COVID-19 different from any other vaccine-preventable disease at this time. Providing patients with a structure for making an educated decision is essential, taking into account (1) what we know about COVID-19 infection during pregnancy, (2) what we know about vaccine efficacy and safety to date, and (3) individual factors such as:
- The presence of comorbidities such as obesity, heart disease, respiratory disease, and diabetes.
- Potential exposures—“Do you have children in school or daycare? Do childcare providers or other workers come to your home? What is your occupation?”
- The ability to take precautions (social distancing, wearing a mask, etc)
All things considered, the decision to accept the COVID-19 vaccine or not ultimately belongs to the patient. Given disease prevalence and the latest information on vaccine safety in pregnancy, I have been advising my patients in the second trimester or beyond to receive the vaccine with the caveat that delaying the vaccine until the postpartum period is a completely valid alternative. The most important gift we can offer our patients is to arm them with the necessary information so that they can make the choice best for them and their family as we continue to fight this war on COVID-19.
- Allotey J, Stallings E, Bonet M, et al. Clinical manifestations, risk factors and maternal and perinatal outcomes of coronavirus disease 2019 in pregnancy: living systematic review and meta-analysis. BMJ. 2020;370:m3320. doi: 10.1136/bmj.m3320.
- Soheili M, Moradi G, Baradaran HR, et al. Clinical manifestation and maternal complications and neonatal outcomes in pregnant women with COVID-19: a comprehensive evidence synthesis and meta-analysis. J Matern Fetal Neonatal Med. February 18, 2021. doi: 10.1080/14767058.2021.1888923.
- Shimabukuro TT, Kim SY, Myers TR, et al. Preliminary findings of mRNA Covid-19 vaccine safety in pregnant persons. N Engl J Med. April 21, 2021. doi: 10.1056/NEJMoa2104983.
- Mithal LB, Otero S, Shanes ED, et al. Cord blood antibodies following maternal COVID-19 vaccination during pregnancy. Am J Obstet Gynecol. 2021;S0002-9378(21)00215-5. doi: 10.1016/j.ajog.2021.03.035.
- Rottenstreich A, Zarbiv G, Oiknine-Djian E, et al. Efficient maternofetal transplacental transfer of anti- SARS-CoV-2 spike antibodies after antenatal SARS-CoV-2 BNT162b2 mRNA vaccination. Clin Infect Dis. 2021;ciab266. doi: 10.1093/cid/ciab266.
- Allotey J, Stallings E, Bonet M, et al. Clinical manifestations, risk factors and maternal and perinatal outcomes of coronavirus disease 2019 in pregnancy: living systematic review and meta-analysis. BMJ. 2020;370:m3320. doi: 10.1136/bmj.m3320.
- Soheili M, Moradi G, Baradaran HR, et al. Clinical manifestation and maternal complications and neonatal outcomes in pregnant women with COVID-19: a comprehensive evidence synthesis and meta-analysis. J Matern Fetal Neonatal Med. February 18, 2021. doi: 10.1080/14767058.2021.1888923.
- Shimabukuro TT, Kim SY, Myers TR, et al. Preliminary findings of mRNA Covid-19 vaccine safety in pregnant persons. N Engl J Med. April 21, 2021. doi: 10.1056/NEJMoa2104983.
- Mithal LB, Otero S, Shanes ED, et al. Cord blood antibodies following maternal COVID-19 vaccination during pregnancy. Am J Obstet Gynecol. 2021;S0002-9378(21)00215-5. doi: 10.1016/j.ajog.2021.03.035.
- Rottenstreich A, Zarbiv G, Oiknine-Djian E, et al. Efficient maternofetal transplacental transfer of anti- SARS-CoV-2 spike antibodies after antenatal SARS-CoV-2 BNT162b2 mRNA vaccination. Clin Infect Dis. 2021;ciab266. doi: 10.1093/cid/ciab266.
Online patient reviews and HIPAA
In 2013, a California hospital paid $275,000 to settle claims that it violated the HIPAA privacy rule when it disclosed a patient’s health information in response to a negative online review. More recently, a Texas dental practice paid a substantial fine to the Department of Health & Human Services, which enforces HIPAA, after it responded to unfavorable Yelp reviews with patient names and details of their health conditions, treatment plans, and cost information. In addition to the fine, the practice agreed to 2 years of monitoring by HHS for compliance with HIPAA rules.
Most physicians have had the unpleasant experience of finding a negative online review from a disgruntled patient or family member. Some are justified, many are not; either way, your first impulse will often be to post a response – but that is almost always a bad idea. “Social media is not the place for providers to discuss a patient’s care,” an HHS official said in a statement issued about the dental practice case in 2016. “Doctors and dentists must think carefully about patient privacy before responding to online reviews.”
Any information that could be used to identify a patient is a HIPAA breach. This is true even if the patient has already disclosed information, because doing so does not nullify their HIPAA rights, and HIPAA provides no exceptions for responses. Even acknowledging that the reviewer was in fact your patient could, in some cases, be considered a violation.
Responding to good reviews can get you in trouble too, for the same reasons. In 2016, a physical therapy practice paid a $25,000 fine after it posted patient testimonials, “including full names and full-face photographic images to its website without obtaining valid, HIPAA-compliant authorizations.”
And by the way, most malpractice policies specifically exclude disciplinary fines and settlements from coverage.
All of that said,
- Ignore them. This is your best choice most of the time. Most negative reviews have minimal impact and simply do not deserve a response; responding may pour fuel on the fire. Besides, an occasional negative review actually lends credibility to a reviewing site and to the positive reviews posted on that site. Polls show that readers are suspicious of sites that contain only rave reviews. They assume such reviews have been “whitewashed” – or just fabricated.
- Solicit more reviews to that site. The more you can obtain, the less impact any complaints will have, since you know the overwhelming majority of your patients are happy with your care and will post a positive review if asked. Solicit them on your website, on social media, or in your email reminders. To be clear, you must encourage reviews from all patients, whether they have had a positive experience or not. If you invite only the satisfied ones, you are “filtering,” which can be perceived as false or deceptive advertising. (Google calls it “review-gating,” and according to their guidelines, if they catch you doing it they will remove all of your reviews.)
- Respond politely. In those rare cases where you feel you must respond, do so without acknowledging that the individual was a patient, or disclosing any information that may be linked to the patient. For example, you can say that you provide excellent and appropriate care, or describe your general policies. Be polite, professional, and sensitive to the patient’s position. Readers tend to respect and sympathize with a doctor who responds in a professional, respectful manner and does not trash the complainant in retaliation.
- Take the discussion offline. Sometimes the person posting the review is just frustrated and wants to be heard. In those cases, consider contacting the patient and offering to discuss their concerns privately. If you cannot resolve your differences, try to get the patient’s written permission to post a response to their review. If they refuse, you can explain that, thereby capturing the moral high ground.
If the review contains false or defamatory content, that’s a different situation entirely; you will probably need to consult your attorney.
Regardless of how you handle negative reviews, be sure to learn from them. Your critics, as the song goes, are not always evil – and not always wrong. Complaints give you a chance to review your office policies and procedures and your own conduct, identify weaknesses, and make changes as necessary. At the very least, the exercise will help you to avoid similar complaints in the future. Don’t let valuable opportunities like that pass you by.
Dr. Eastern practices dermatology and dermatologic surgery in Belleville, N.J. He is the author of numerous articles and textbook chapters, and is a longtime monthly columnist for Dermatology News. Write to him at dermnews@frontlinemedcom.com.
In 2013, a California hospital paid $275,000 to settle claims that it violated the HIPAA privacy rule when it disclosed a patient’s health information in response to a negative online review. More recently, a Texas dental practice paid a substantial fine to the Department of Health & Human Services, which enforces HIPAA, after it responded to unfavorable Yelp reviews with patient names and details of their health conditions, treatment plans, and cost information. In addition to the fine, the practice agreed to 2 years of monitoring by HHS for compliance with HIPAA rules.
Most physicians have had the unpleasant experience of finding a negative online review from a disgruntled patient or family member. Some are justified, many are not; either way, your first impulse will often be to post a response – but that is almost always a bad idea. “Social media is not the place for providers to discuss a patient’s care,” an HHS official said in a statement issued about the dental practice case in 2016. “Doctors and dentists must think carefully about patient privacy before responding to online reviews.”
Any information that could be used to identify a patient is a HIPAA breach. This is true even if the patient has already disclosed information, because doing so does not nullify their HIPAA rights, and HIPAA provides no exceptions for responses. Even acknowledging that the reviewer was in fact your patient could, in some cases, be considered a violation.
Responding to good reviews can get you in trouble too, for the same reasons. In 2016, a physical therapy practice paid a $25,000 fine after it posted patient testimonials, “including full names and full-face photographic images to its website without obtaining valid, HIPAA-compliant authorizations.”
And by the way, most malpractice policies specifically exclude disciplinary fines and settlements from coverage.
All of that said,
- Ignore them. This is your best choice most of the time. Most negative reviews have minimal impact and simply do not deserve a response; responding may pour fuel on the fire. Besides, an occasional negative review actually lends credibility to a reviewing site and to the positive reviews posted on that site. Polls show that readers are suspicious of sites that contain only rave reviews. They assume such reviews have been “whitewashed” – or just fabricated.
- Solicit more reviews to that site. The more you can obtain, the less impact any complaints will have, since you know the overwhelming majority of your patients are happy with your care and will post a positive review if asked. Solicit them on your website, on social media, or in your email reminders. To be clear, you must encourage reviews from all patients, whether they have had a positive experience or not. If you invite only the satisfied ones, you are “filtering,” which can be perceived as false or deceptive advertising. (Google calls it “review-gating,” and according to their guidelines, if they catch you doing it they will remove all of your reviews.)
- Respond politely. In those rare cases where you feel you must respond, do so without acknowledging that the individual was a patient, or disclosing any information that may be linked to the patient. For example, you can say that you provide excellent and appropriate care, or describe your general policies. Be polite, professional, and sensitive to the patient’s position. Readers tend to respect and sympathize with a doctor who responds in a professional, respectful manner and does not trash the complainant in retaliation.
- Take the discussion offline. Sometimes the person posting the review is just frustrated and wants to be heard. In those cases, consider contacting the patient and offering to discuss their concerns privately. If you cannot resolve your differences, try to get the patient’s written permission to post a response to their review. If they refuse, you can explain that, thereby capturing the moral high ground.
If the review contains false or defamatory content, that’s a different situation entirely; you will probably need to consult your attorney.
Regardless of how you handle negative reviews, be sure to learn from them. Your critics, as the song goes, are not always evil – and not always wrong. Complaints give you a chance to review your office policies and procedures and your own conduct, identify weaknesses, and make changes as necessary. At the very least, the exercise will help you to avoid similar complaints in the future. Don’t let valuable opportunities like that pass you by.
Dr. Eastern practices dermatology and dermatologic surgery in Belleville, N.J. He is the author of numerous articles and textbook chapters, and is a longtime monthly columnist for Dermatology News. Write to him at dermnews@frontlinemedcom.com.
In 2013, a California hospital paid $275,000 to settle claims that it violated the HIPAA privacy rule when it disclosed a patient’s health information in response to a negative online review. More recently, a Texas dental practice paid a substantial fine to the Department of Health & Human Services, which enforces HIPAA, after it responded to unfavorable Yelp reviews with patient names and details of their health conditions, treatment plans, and cost information. In addition to the fine, the practice agreed to 2 years of monitoring by HHS for compliance with HIPAA rules.
Most physicians have had the unpleasant experience of finding a negative online review from a disgruntled patient or family member. Some are justified, many are not; either way, your first impulse will often be to post a response – but that is almost always a bad idea. “Social media is not the place for providers to discuss a patient’s care,” an HHS official said in a statement issued about the dental practice case in 2016. “Doctors and dentists must think carefully about patient privacy before responding to online reviews.”
Any information that could be used to identify a patient is a HIPAA breach. This is true even if the patient has already disclosed information, because doing so does not nullify their HIPAA rights, and HIPAA provides no exceptions for responses. Even acknowledging that the reviewer was in fact your patient could, in some cases, be considered a violation.
Responding to good reviews can get you in trouble too, for the same reasons. In 2016, a physical therapy practice paid a $25,000 fine after it posted patient testimonials, “including full names and full-face photographic images to its website without obtaining valid, HIPAA-compliant authorizations.”
And by the way, most malpractice policies specifically exclude disciplinary fines and settlements from coverage.
All of that said,
- Ignore them. This is your best choice most of the time. Most negative reviews have minimal impact and simply do not deserve a response; responding may pour fuel on the fire. Besides, an occasional negative review actually lends credibility to a reviewing site and to the positive reviews posted on that site. Polls show that readers are suspicious of sites that contain only rave reviews. They assume such reviews have been “whitewashed” – or just fabricated.
- Solicit more reviews to that site. The more you can obtain, the less impact any complaints will have, since you know the overwhelming majority of your patients are happy with your care and will post a positive review if asked. Solicit them on your website, on social media, or in your email reminders. To be clear, you must encourage reviews from all patients, whether they have had a positive experience or not. If you invite only the satisfied ones, you are “filtering,” which can be perceived as false or deceptive advertising. (Google calls it “review-gating,” and according to their guidelines, if they catch you doing it they will remove all of your reviews.)
- Respond politely. In those rare cases where you feel you must respond, do so without acknowledging that the individual was a patient, or disclosing any information that may be linked to the patient. For example, you can say that you provide excellent and appropriate care, or describe your general policies. Be polite, professional, and sensitive to the patient’s position. Readers tend to respect and sympathize with a doctor who responds in a professional, respectful manner and does not trash the complainant in retaliation.
- Take the discussion offline. Sometimes the person posting the review is just frustrated and wants to be heard. In those cases, consider contacting the patient and offering to discuss their concerns privately. If you cannot resolve your differences, try to get the patient’s written permission to post a response to their review. If they refuse, you can explain that, thereby capturing the moral high ground.
If the review contains false or defamatory content, that’s a different situation entirely; you will probably need to consult your attorney.
Regardless of how you handle negative reviews, be sure to learn from them. Your critics, as the song goes, are not always evil – and not always wrong. Complaints give you a chance to review your office policies and procedures and your own conduct, identify weaknesses, and make changes as necessary. At the very least, the exercise will help you to avoid similar complaints in the future. Don’t let valuable opportunities like that pass you by.
Dr. Eastern practices dermatology and dermatologic surgery in Belleville, N.J. He is the author of numerous articles and textbook chapters, and is a longtime monthly columnist for Dermatology News. Write to him at dermnews@frontlinemedcom.com.
Who is my neighbor? The ethics of sharing medical resources in the world
India is in a crisis as the burden of COVID-19 has collapsed parts of the health care system. There are not enough beds, not enough oxygen, and not enough crematoria to handle the pandemic. India is also a major supplier of vaccines for itself and many other countries. That production capacity has also been affected by the local events, further worsening the response to the pandemic over the next few months.
This collapse is the specter that, in April 2020, placed a hospital ship next to Manhattan and rows of beds in its convention center. Fortunately, the lockdown in March 2020 sufficiently flattened the curve. The city avoided utilizing that disaster capacity, though many New Yorkers died out of sight in nursing homes. When the third and largest wave of cases in the United States peaked in January 2021, hospitals throughout California reached capacity but avoided bursting. In April 2021, localized outbreaks in Michigan, Arizona, and Ontario again tested the maximum capacity for providing modern medical treatments. Great Britain used a second lockdown in October 2020 and a third in January 2021 to control the pandemic, with Prime Minister Boris Johnson emphasizing that it was these social interventions, and not vaccines, which provided the mitigating effects. Other European Union nations adopted similar strategies. Prudent choices by government guided by science, combined with the cooperation of the public, have been and still are crucial to mollify the pandemic.
There is hope that soon vaccines will return daily life to a new normal. In the United States, the Centers for Disease Control and Prevention has loosened restrictions on social gathering. An increase in daily new cases of COVID-19 in April 2021 has turned into just a blip before continuing to recede. Perhaps that is the first sign of vaccination working at the level of public health. However, the May 2021 lockdown in highly vaccinated Seychelles is a warning that the danger remains. A single match can start a huge forest fire. The first 150 million cases of COVID-19 worldwide have, through natural rates of mutation, produced several variants that might partially evade current vaccines. The danger of newer variants persists with the next 150 million cases as the pandemic continues to rage in many nations which are just one airplane ride away. All human inhabitants of this blue-covered third rock from the sun are interconnected.
The benefits of scientific advancement have been extolled for centuries. This includes both individual discoveries as well as a mindset that favors rationalism over fatalism. On the whole, the benefits of scientific progress outweigh the negatives. Negative environmental impacts include pollution and climate change. Economic impacts include raising the mean economic standard of living but with greater inequity. Historically, governmental and social institutions have attempted to mitigate these negative consequences. Those efforts have attempted to provide guidance and a moral compass to direct the progress of scientific advancement, particularly in fields like gene therapy. Those efforts have called upon developed nations to share the bounties of progress with other nations.
Modern medicine has provided the fruit of these scientific advancements to a limited fraction of the world’s population during the 20th century. The improvements in life expectancy and infant mortality have come primarily from civil engineers getting running water into cities and sewage out. A smaller portion of the benefits are from public health measures that reduced tuberculosis, smallpox, polio, and measles. Agriculture became more reliable, productive, and nutritious. In the 21st century, medical care (control of hypertension, diabetes, and clotting) aimed at reducing heart disease and strokes have added another 2-3 years to the life expectancy in the United States, with much of that benefit erased by the epidemics of obesity and opioid abuse.
Modern medical technology has created treatments that cost $10,000 a month to add a few extra months of life to geriatric patients with terminal cancer. Meanwhile, in more mundane care, efforts like Choosing Wisely seek to save money wasted on low-value, useless, and even harmful tests and therapies. There is no single person or agency managing this chaotic process of inventing expensive new technologies while inadequately addressing the widespread shortages of mental health care, disparities in education, and other social determinants of health. The pandemic has highlighted these preexisting weaknesses in the social fabric.
The cries from India have been accompanied by voices of anger from India and other nations accusing the United States of hoarding vaccines and the raw materials needed to produce them. This has been called vaccine apartheid. The United States is not alone in its political decision to prioritize domestic interests over international ones; India’s recent government is similarly nationalistic. Scientists warn that no one is safe locally as long as the pandemic rages in other countries. The Biden administration, in a delayed response to the crisis in India, finally announced plans to share some unused vaccines (of a brand not yet Food and Drug Administration approved) as well as some vaccine raw materials whose export was forbidden by a regulation under the Defense Production Act. Reading below the headlines, the promised response won’t be implemented for weeks or months. We must do better.
The logistics of sharing the benefits of advanced science are complicated. The ethics are not. Who is my neighbor? If you didn’t learn the answer to that in Sunday school, there isn’t much more I can say.
Dr. Powell is a retired pediatric hospitalist and clinical ethics consultant living in St. Louis. He has no financial disclosures, Email him at pdnews@mdedge.com
India is in a crisis as the burden of COVID-19 has collapsed parts of the health care system. There are not enough beds, not enough oxygen, and not enough crematoria to handle the pandemic. India is also a major supplier of vaccines for itself and many other countries. That production capacity has also been affected by the local events, further worsening the response to the pandemic over the next few months.
This collapse is the specter that, in April 2020, placed a hospital ship next to Manhattan and rows of beds in its convention center. Fortunately, the lockdown in March 2020 sufficiently flattened the curve. The city avoided utilizing that disaster capacity, though many New Yorkers died out of sight in nursing homes. When the third and largest wave of cases in the United States peaked in January 2021, hospitals throughout California reached capacity but avoided bursting. In April 2021, localized outbreaks in Michigan, Arizona, and Ontario again tested the maximum capacity for providing modern medical treatments. Great Britain used a second lockdown in October 2020 and a third in January 2021 to control the pandemic, with Prime Minister Boris Johnson emphasizing that it was these social interventions, and not vaccines, which provided the mitigating effects. Other European Union nations adopted similar strategies. Prudent choices by government guided by science, combined with the cooperation of the public, have been and still are crucial to mollify the pandemic.
There is hope that soon vaccines will return daily life to a new normal. In the United States, the Centers for Disease Control and Prevention has loosened restrictions on social gathering. An increase in daily new cases of COVID-19 in April 2021 has turned into just a blip before continuing to recede. Perhaps that is the first sign of vaccination working at the level of public health. However, the May 2021 lockdown in highly vaccinated Seychelles is a warning that the danger remains. A single match can start a huge forest fire. The first 150 million cases of COVID-19 worldwide have, through natural rates of mutation, produced several variants that might partially evade current vaccines. The danger of newer variants persists with the next 150 million cases as the pandemic continues to rage in many nations which are just one airplane ride away. All human inhabitants of this blue-covered third rock from the sun are interconnected.
The benefits of scientific advancement have been extolled for centuries. This includes both individual discoveries as well as a mindset that favors rationalism over fatalism. On the whole, the benefits of scientific progress outweigh the negatives. Negative environmental impacts include pollution and climate change. Economic impacts include raising the mean economic standard of living but with greater inequity. Historically, governmental and social institutions have attempted to mitigate these negative consequences. Those efforts have attempted to provide guidance and a moral compass to direct the progress of scientific advancement, particularly in fields like gene therapy. Those efforts have called upon developed nations to share the bounties of progress with other nations.
Modern medicine has provided the fruit of these scientific advancements to a limited fraction of the world’s population during the 20th century. The improvements in life expectancy and infant mortality have come primarily from civil engineers getting running water into cities and sewage out. A smaller portion of the benefits are from public health measures that reduced tuberculosis, smallpox, polio, and measles. Agriculture became more reliable, productive, and nutritious. In the 21st century, medical care (control of hypertension, diabetes, and clotting) aimed at reducing heart disease and strokes have added another 2-3 years to the life expectancy in the United States, with much of that benefit erased by the epidemics of obesity and opioid abuse.
Modern medical technology has created treatments that cost $10,000 a month to add a few extra months of life to geriatric patients with terminal cancer. Meanwhile, in more mundane care, efforts like Choosing Wisely seek to save money wasted on low-value, useless, and even harmful tests and therapies. There is no single person or agency managing this chaotic process of inventing expensive new technologies while inadequately addressing the widespread shortages of mental health care, disparities in education, and other social determinants of health. The pandemic has highlighted these preexisting weaknesses in the social fabric.
The cries from India have been accompanied by voices of anger from India and other nations accusing the United States of hoarding vaccines and the raw materials needed to produce them. This has been called vaccine apartheid. The United States is not alone in its political decision to prioritize domestic interests over international ones; India’s recent government is similarly nationalistic. Scientists warn that no one is safe locally as long as the pandemic rages in other countries. The Biden administration, in a delayed response to the crisis in India, finally announced plans to share some unused vaccines (of a brand not yet Food and Drug Administration approved) as well as some vaccine raw materials whose export was forbidden by a regulation under the Defense Production Act. Reading below the headlines, the promised response won’t be implemented for weeks or months. We must do better.
The logistics of sharing the benefits of advanced science are complicated. The ethics are not. Who is my neighbor? If you didn’t learn the answer to that in Sunday school, there isn’t much more I can say.
Dr. Powell is a retired pediatric hospitalist and clinical ethics consultant living in St. Louis. He has no financial disclosures, Email him at pdnews@mdedge.com
India is in a crisis as the burden of COVID-19 has collapsed parts of the health care system. There are not enough beds, not enough oxygen, and not enough crematoria to handle the pandemic. India is also a major supplier of vaccines for itself and many other countries. That production capacity has also been affected by the local events, further worsening the response to the pandemic over the next few months.
This collapse is the specter that, in April 2020, placed a hospital ship next to Manhattan and rows of beds in its convention center. Fortunately, the lockdown in March 2020 sufficiently flattened the curve. The city avoided utilizing that disaster capacity, though many New Yorkers died out of sight in nursing homes. When the third and largest wave of cases in the United States peaked in January 2021, hospitals throughout California reached capacity but avoided bursting. In April 2021, localized outbreaks in Michigan, Arizona, and Ontario again tested the maximum capacity for providing modern medical treatments. Great Britain used a second lockdown in October 2020 and a third in January 2021 to control the pandemic, with Prime Minister Boris Johnson emphasizing that it was these social interventions, and not vaccines, which provided the mitigating effects. Other European Union nations adopted similar strategies. Prudent choices by government guided by science, combined with the cooperation of the public, have been and still are crucial to mollify the pandemic.
There is hope that soon vaccines will return daily life to a new normal. In the United States, the Centers for Disease Control and Prevention has loosened restrictions on social gathering. An increase in daily new cases of COVID-19 in April 2021 has turned into just a blip before continuing to recede. Perhaps that is the first sign of vaccination working at the level of public health. However, the May 2021 lockdown in highly vaccinated Seychelles is a warning that the danger remains. A single match can start a huge forest fire. The first 150 million cases of COVID-19 worldwide have, through natural rates of mutation, produced several variants that might partially evade current vaccines. The danger of newer variants persists with the next 150 million cases as the pandemic continues to rage in many nations which are just one airplane ride away. All human inhabitants of this blue-covered third rock from the sun are interconnected.
The benefits of scientific advancement have been extolled for centuries. This includes both individual discoveries as well as a mindset that favors rationalism over fatalism. On the whole, the benefits of scientific progress outweigh the negatives. Negative environmental impacts include pollution and climate change. Economic impacts include raising the mean economic standard of living but with greater inequity. Historically, governmental and social institutions have attempted to mitigate these negative consequences. Those efforts have attempted to provide guidance and a moral compass to direct the progress of scientific advancement, particularly in fields like gene therapy. Those efforts have called upon developed nations to share the bounties of progress with other nations.
Modern medicine has provided the fruit of these scientific advancements to a limited fraction of the world’s population during the 20th century. The improvements in life expectancy and infant mortality have come primarily from civil engineers getting running water into cities and sewage out. A smaller portion of the benefits are from public health measures that reduced tuberculosis, smallpox, polio, and measles. Agriculture became more reliable, productive, and nutritious. In the 21st century, medical care (control of hypertension, diabetes, and clotting) aimed at reducing heart disease and strokes have added another 2-3 years to the life expectancy in the United States, with much of that benefit erased by the epidemics of obesity and opioid abuse.
Modern medical technology has created treatments that cost $10,000 a month to add a few extra months of life to geriatric patients with terminal cancer. Meanwhile, in more mundane care, efforts like Choosing Wisely seek to save money wasted on low-value, useless, and even harmful tests and therapies. There is no single person or agency managing this chaotic process of inventing expensive new technologies while inadequately addressing the widespread shortages of mental health care, disparities in education, and other social determinants of health. The pandemic has highlighted these preexisting weaknesses in the social fabric.
The cries from India have been accompanied by voices of anger from India and other nations accusing the United States of hoarding vaccines and the raw materials needed to produce them. This has been called vaccine apartheid. The United States is not alone in its political decision to prioritize domestic interests over international ones; India’s recent government is similarly nationalistic. Scientists warn that no one is safe locally as long as the pandemic rages in other countries. The Biden administration, in a delayed response to the crisis in India, finally announced plans to share some unused vaccines (of a brand not yet Food and Drug Administration approved) as well as some vaccine raw materials whose export was forbidden by a regulation under the Defense Production Act. Reading below the headlines, the promised response won’t be implemented for weeks or months. We must do better.
The logistics of sharing the benefits of advanced science are complicated. The ethics are not. Who is my neighbor? If you didn’t learn the answer to that in Sunday school, there isn’t much more I can say.
Dr. Powell is a retired pediatric hospitalist and clinical ethics consultant living in St. Louis. He has no financial disclosures, Email him at pdnews@mdedge.com
COVID-19 in children and adolescents: Disease burden and severity
My first thought on this column was maybe Pediatric News has written sufficiently about SARS-CoV-2 infection, and it is time to move on. However, the agenda for the May 12th Advisory Committee on Immunization Practice includes a review of the Pfizer-BioNTech COVID-19 vaccine safety and immunogenicity data for the 12- to 15-year-old age cohort that suggests the potential for vaccine availability and roll out for early adolescents in the near future and the need for up-to-date knowledge about the incidence, severity, and long-term outcome of COVID-19 in the pediatric population.
Updating and summarizing the pediatric experience for the pediatric community on what children and adolescents have experienced because of SARS-CoV-2 infection is critical to address the myriad of questions that will come from colleagues, parents, and adolescents themselves. A great resource, published weekly, is the joint report from the American Academy of Pediatrics and the Children’s Hospital Association.1 As of April 29, 2021, 3,782,724 total child COVID-19 cases have been reported from 49 states, New York City (NYC), the District of Columbia, Guam, and Puerto Rico. Children represent approximately 14% of cases in the United States and not surprisingly are an increasing proportion of total cases as vaccine impact reduces cases among older age groups. Nearly 5% of the pediatric population has already been infected with SARS-CoV-2. Fortunately, compared with adults, hospitalization, severe disease, and mortality remain far lower both in number and proportion than in the adult population. Cumulative hospitalizations from 24 states and NYC total 15,456 (0.8%) among those infected, with 303 deaths reported (from 43 states, NYC, Guam, and Puerto Rico). Case fatality rate approximates 0.01% in the most recent summary of state reports. One of the limitations of this report is that each state decides how to report the age distribution of COVID-19 cases resulting in variation in age range; another is the data are limited to those details individual states chose to make publicly available.
Although children do not commonly develop severe disease, and the case fatality is low, there are still insights to be learned from understanding risk features for severe disease. Preston et al. reviewed discharge data from 869 medical facilities to describe patients 18 years or younger who had an inpatient or emergency department encounter with a primary or secondary COVID-19 discharge diagnosis from March 1 through October 31, 2020.2 They reported that approximately 2,430 (11.7%) children were hospitalized and 746, nearly 31% of those hospitalized, had severe COVID disease. Those at greatest risk for severe disease were children with comorbid conditions and those less than 12 years, compared with the 12- to 18-year age group. They did not identify race as a risk for severe disease in this study. Moreira et al. described risk factors for morbidity and death from COVID in children less than 18 years of age3 using CDC COVID-NET, the Centers for Disease Control and Prevention COVID-19–associated hospitalization surveillance network. They reported a hospitalization rate of 4.7% among 27,045 cases. They identified three risk factors for hospitalization – age, race/ethnicity, and comorbid conditions. Thirty-nine children (0.19%) died; children who were black, non-Hispanic, and those with an underlying medical condition had a significantly increased risk of death. Thirty-three (85%) children who died had a comorbidity, and 27 (69%) were African American or Hispanic/Latino. The U.S. experience in children is also consistent with reports from the United Kingdom, Italy, Spain, Germany, France, and South Korea.4 Deaths from COVID-19 were uncommon but relatively more frequent in older children, compared with younger age groups among children less than 18 years of age in these countries.
Acute COVID-19 and multisystem inflammatory syndrome in children (MIS-C) do not predominantly target the neurologic systems; however, neurologic complications have been reported, some of which appear to result in long-lasting disability. LaRovere et al. identified 354 (22%) of 1,695 patients less than 21 years of age with acute COVID or MIS-C who had neurologic signs or symptoms during their illness. Among those with neurologic involvement, most children had prior neurologic deficits, mild symptoms, that resolved by the time of discharge. Forty-three (12%) were considered life threatening and included severe encephalopathy, stroke, central nervous system infection/demyelination, Guillain-Barre syndrome or variant, or acute cerebral edema. Several children, including some who were previously healthy prior to COVID, had persistent neurologic deficits at discharge. In addition to neurologic morbidity, long COVID – a syndrome of persistent symptoms following acute COVID that lasts for more than 12 weeks without alternative diagnosis – has also been described in children. Buonsenso et al. assessed 129 children diagnosed with COVID-19 between March and November 2020 in Rome, Italy.5 Persisting symptoms after 120 days were reported by more than 50%. Symptoms like fatigue, muscle and joint pain, headache, insomnia, respiratory problems, and palpitations were most common. Clearly, further follow-up of the long-term outcomes is necessary to understand the full spectrum of morbidity resulting from COVID-19 disease in children and its natural history.
The current picture of COVID infection in children younger than 18 reinforces that children are part of the pandemic. Although deaths in children have now exceeded 300 cases, severe disease remains uncommon in both the United States and western Europe. Risk factors for severe disease include comorbid illness and race/ethnicity with a disproportionate number of severe cases in children with underlying comorbidity and in African American and Hispanic/Latino children. Ongoing surveillance is critical as changes are likely to be observed over time as viral evolution affects disease burden and characteristics.
Dr. Pelton is professor of pediatrics and epidemiology at Boston University schools of medicine and public health and senior attending physician in pediatric infectious diseases, Boston Medical Center. Email him at pdnews@mdedge.com.
References
1. Children and COVID-19: State-Level Data Report. Services AAP.org.
2. Preston LE et al. JAMA Network Open. 2021;4(4):e215298. doi:10.1001/jamanetworkopen.2021.5298
3. Moreira A et al. Eur J Pediatr. 2021;180:1659-63.
4. SS Bhopal et al. Lancet 2021. doi: 10.1016/ S2352-4642(21)00066-3.
5. Buonsenso D et al. medRxiv preprint. doi: 10.1101/2021.01.23.21250375.
My first thought on this column was maybe Pediatric News has written sufficiently about SARS-CoV-2 infection, and it is time to move on. However, the agenda for the May 12th Advisory Committee on Immunization Practice includes a review of the Pfizer-BioNTech COVID-19 vaccine safety and immunogenicity data for the 12- to 15-year-old age cohort that suggests the potential for vaccine availability and roll out for early adolescents in the near future and the need for up-to-date knowledge about the incidence, severity, and long-term outcome of COVID-19 in the pediatric population.
Updating and summarizing the pediatric experience for the pediatric community on what children and adolescents have experienced because of SARS-CoV-2 infection is critical to address the myriad of questions that will come from colleagues, parents, and adolescents themselves. A great resource, published weekly, is the joint report from the American Academy of Pediatrics and the Children’s Hospital Association.1 As of April 29, 2021, 3,782,724 total child COVID-19 cases have been reported from 49 states, New York City (NYC), the District of Columbia, Guam, and Puerto Rico. Children represent approximately 14% of cases in the United States and not surprisingly are an increasing proportion of total cases as vaccine impact reduces cases among older age groups. Nearly 5% of the pediatric population has already been infected with SARS-CoV-2. Fortunately, compared with adults, hospitalization, severe disease, and mortality remain far lower both in number and proportion than in the adult population. Cumulative hospitalizations from 24 states and NYC total 15,456 (0.8%) among those infected, with 303 deaths reported (from 43 states, NYC, Guam, and Puerto Rico). Case fatality rate approximates 0.01% in the most recent summary of state reports. One of the limitations of this report is that each state decides how to report the age distribution of COVID-19 cases resulting in variation in age range; another is the data are limited to those details individual states chose to make publicly available.
Although children do not commonly develop severe disease, and the case fatality is low, there are still insights to be learned from understanding risk features for severe disease. Preston et al. reviewed discharge data from 869 medical facilities to describe patients 18 years or younger who had an inpatient or emergency department encounter with a primary or secondary COVID-19 discharge diagnosis from March 1 through October 31, 2020.2 They reported that approximately 2,430 (11.7%) children were hospitalized and 746, nearly 31% of those hospitalized, had severe COVID disease. Those at greatest risk for severe disease were children with comorbid conditions and those less than 12 years, compared with the 12- to 18-year age group. They did not identify race as a risk for severe disease in this study. Moreira et al. described risk factors for morbidity and death from COVID in children less than 18 years of age3 using CDC COVID-NET, the Centers for Disease Control and Prevention COVID-19–associated hospitalization surveillance network. They reported a hospitalization rate of 4.7% among 27,045 cases. They identified three risk factors for hospitalization – age, race/ethnicity, and comorbid conditions. Thirty-nine children (0.19%) died; children who were black, non-Hispanic, and those with an underlying medical condition had a significantly increased risk of death. Thirty-three (85%) children who died had a comorbidity, and 27 (69%) were African American or Hispanic/Latino. The U.S. experience in children is also consistent with reports from the United Kingdom, Italy, Spain, Germany, France, and South Korea.4 Deaths from COVID-19 were uncommon but relatively more frequent in older children, compared with younger age groups among children less than 18 years of age in these countries.
Acute COVID-19 and multisystem inflammatory syndrome in children (MIS-C) do not predominantly target the neurologic systems; however, neurologic complications have been reported, some of which appear to result in long-lasting disability. LaRovere et al. identified 354 (22%) of 1,695 patients less than 21 years of age with acute COVID or MIS-C who had neurologic signs or symptoms during their illness. Among those with neurologic involvement, most children had prior neurologic deficits, mild symptoms, that resolved by the time of discharge. Forty-three (12%) were considered life threatening and included severe encephalopathy, stroke, central nervous system infection/demyelination, Guillain-Barre syndrome or variant, or acute cerebral edema. Several children, including some who were previously healthy prior to COVID, had persistent neurologic deficits at discharge. In addition to neurologic morbidity, long COVID – a syndrome of persistent symptoms following acute COVID that lasts for more than 12 weeks without alternative diagnosis – has also been described in children. Buonsenso et al. assessed 129 children diagnosed with COVID-19 between March and November 2020 in Rome, Italy.5 Persisting symptoms after 120 days were reported by more than 50%. Symptoms like fatigue, muscle and joint pain, headache, insomnia, respiratory problems, and palpitations were most common. Clearly, further follow-up of the long-term outcomes is necessary to understand the full spectrum of morbidity resulting from COVID-19 disease in children and its natural history.
The current picture of COVID infection in children younger than 18 reinforces that children are part of the pandemic. Although deaths in children have now exceeded 300 cases, severe disease remains uncommon in both the United States and western Europe. Risk factors for severe disease include comorbid illness and race/ethnicity with a disproportionate number of severe cases in children with underlying comorbidity and in African American and Hispanic/Latino children. Ongoing surveillance is critical as changes are likely to be observed over time as viral evolution affects disease burden and characteristics.
Dr. Pelton is professor of pediatrics and epidemiology at Boston University schools of medicine and public health and senior attending physician in pediatric infectious diseases, Boston Medical Center. Email him at pdnews@mdedge.com.
References
1. Children and COVID-19: State-Level Data Report. Services AAP.org.
2. Preston LE et al. JAMA Network Open. 2021;4(4):e215298. doi:10.1001/jamanetworkopen.2021.5298
3. Moreira A et al. Eur J Pediatr. 2021;180:1659-63.
4. SS Bhopal et al. Lancet 2021. doi: 10.1016/ S2352-4642(21)00066-3.
5. Buonsenso D et al. medRxiv preprint. doi: 10.1101/2021.01.23.21250375.
My first thought on this column was maybe Pediatric News has written sufficiently about SARS-CoV-2 infection, and it is time to move on. However, the agenda for the May 12th Advisory Committee on Immunization Practice includes a review of the Pfizer-BioNTech COVID-19 vaccine safety and immunogenicity data for the 12- to 15-year-old age cohort that suggests the potential for vaccine availability and roll out for early adolescents in the near future and the need for up-to-date knowledge about the incidence, severity, and long-term outcome of COVID-19 in the pediatric population.
Updating and summarizing the pediatric experience for the pediatric community on what children and adolescents have experienced because of SARS-CoV-2 infection is critical to address the myriad of questions that will come from colleagues, parents, and adolescents themselves. A great resource, published weekly, is the joint report from the American Academy of Pediatrics and the Children’s Hospital Association.1 As of April 29, 2021, 3,782,724 total child COVID-19 cases have been reported from 49 states, New York City (NYC), the District of Columbia, Guam, and Puerto Rico. Children represent approximately 14% of cases in the United States and not surprisingly are an increasing proportion of total cases as vaccine impact reduces cases among older age groups. Nearly 5% of the pediatric population has already been infected with SARS-CoV-2. Fortunately, compared with adults, hospitalization, severe disease, and mortality remain far lower both in number and proportion than in the adult population. Cumulative hospitalizations from 24 states and NYC total 15,456 (0.8%) among those infected, with 303 deaths reported (from 43 states, NYC, Guam, and Puerto Rico). Case fatality rate approximates 0.01% in the most recent summary of state reports. One of the limitations of this report is that each state decides how to report the age distribution of COVID-19 cases resulting in variation in age range; another is the data are limited to those details individual states chose to make publicly available.
Although children do not commonly develop severe disease, and the case fatality is low, there are still insights to be learned from understanding risk features for severe disease. Preston et al. reviewed discharge data from 869 medical facilities to describe patients 18 years or younger who had an inpatient or emergency department encounter with a primary or secondary COVID-19 discharge diagnosis from March 1 through October 31, 2020.2 They reported that approximately 2,430 (11.7%) children were hospitalized and 746, nearly 31% of those hospitalized, had severe COVID disease. Those at greatest risk for severe disease were children with comorbid conditions and those less than 12 years, compared with the 12- to 18-year age group. They did not identify race as a risk for severe disease in this study. Moreira et al. described risk factors for morbidity and death from COVID in children less than 18 years of age3 using CDC COVID-NET, the Centers for Disease Control and Prevention COVID-19–associated hospitalization surveillance network. They reported a hospitalization rate of 4.7% among 27,045 cases. They identified three risk factors for hospitalization – age, race/ethnicity, and comorbid conditions. Thirty-nine children (0.19%) died; children who were black, non-Hispanic, and those with an underlying medical condition had a significantly increased risk of death. Thirty-three (85%) children who died had a comorbidity, and 27 (69%) were African American or Hispanic/Latino. The U.S. experience in children is also consistent with reports from the United Kingdom, Italy, Spain, Germany, France, and South Korea.4 Deaths from COVID-19 were uncommon but relatively more frequent in older children, compared with younger age groups among children less than 18 years of age in these countries.
Acute COVID-19 and multisystem inflammatory syndrome in children (MIS-C) do not predominantly target the neurologic systems; however, neurologic complications have been reported, some of which appear to result in long-lasting disability. LaRovere et al. identified 354 (22%) of 1,695 patients less than 21 years of age with acute COVID or MIS-C who had neurologic signs or symptoms during their illness. Among those with neurologic involvement, most children had prior neurologic deficits, mild symptoms, that resolved by the time of discharge. Forty-three (12%) were considered life threatening and included severe encephalopathy, stroke, central nervous system infection/demyelination, Guillain-Barre syndrome or variant, or acute cerebral edema. Several children, including some who were previously healthy prior to COVID, had persistent neurologic deficits at discharge. In addition to neurologic morbidity, long COVID – a syndrome of persistent symptoms following acute COVID that lasts for more than 12 weeks without alternative diagnosis – has also been described in children. Buonsenso et al. assessed 129 children diagnosed with COVID-19 between March and November 2020 in Rome, Italy.5 Persisting symptoms after 120 days were reported by more than 50%. Symptoms like fatigue, muscle and joint pain, headache, insomnia, respiratory problems, and palpitations were most common. Clearly, further follow-up of the long-term outcomes is necessary to understand the full spectrum of morbidity resulting from COVID-19 disease in children and its natural history.
The current picture of COVID infection in children younger than 18 reinforces that children are part of the pandemic. Although deaths in children have now exceeded 300 cases, severe disease remains uncommon in both the United States and western Europe. Risk factors for severe disease include comorbid illness and race/ethnicity with a disproportionate number of severe cases in children with underlying comorbidity and in African American and Hispanic/Latino children. Ongoing surveillance is critical as changes are likely to be observed over time as viral evolution affects disease burden and characteristics.
Dr. Pelton is professor of pediatrics and epidemiology at Boston University schools of medicine and public health and senior attending physician in pediatric infectious diseases, Boston Medical Center. Email him at pdnews@mdedge.com.
References
1. Children and COVID-19: State-Level Data Report. Services AAP.org.
2. Preston LE et al. JAMA Network Open. 2021;4(4):e215298. doi:10.1001/jamanetworkopen.2021.5298
3. Moreira A et al. Eur J Pediatr. 2021;180:1659-63.
4. SS Bhopal et al. Lancet 2021. doi: 10.1016/ S2352-4642(21)00066-3.
5. Buonsenso D et al. medRxiv preprint. doi: 10.1101/2021.01.23.21250375.
Genetic variants account for up to one-third of cases of cerebral palsy
Cerebral palsy (CP) is the most common cause of severe neurodisability in children, and it occurs in about 2 to 3 per 1,000 births worldwide.1 This nonprogressive disorder is characterized by symptoms that include spasticity, dystonia, choreoathetosis, and/or ataxia that are evident in the first few years of life. While many perinatal variables have been associated with CP, in most cases a specific cause is not identified.
Other neurodevelopmental disorders, such as intellectual disability, epilepsy, and autism spectrum disorder, are often associated with CP.2 These other neurodevelopmental disorders are often genetic, and this has raised the question as to whether CP also might have a substantial genetic component, although this has not been investigated in any significant way until recently. This topic is of great interest to the obstetric community, given that CP often is attributed to obstetric events, including mismanagement of labor and delivery.
Emerging evidence of a genetic-CP association
In an article published recently in JAMA, Moreno-De-Luca and colleagues sought to determine the diagnostic yield of exome sequencing for CP.3 This large cross-sectional study included results of exome sequencing performed in 2 settings. The first setting was a commercial laboratory in which samples were sent for analysis due to a diagnosis of CP, primarily in children (n = 1,345) with a median age of 8.8 years. A second cohort, recruited from a neurodevelopmental disorders clinic at Geisinger, included primarily adults (n = 181) with a median age of 41.9 years.
As is standard in exome sequencing, results were considered likely causative if they were classified as pathogenic or likely pathogenic based on criteria of the American College of Genetics and Genomics. In the laboratory group, 32.7% (440 of 1,345) had a genetic cause of the CP identified, while in the clinic group, 10.5% (19 of 181) had a genetic etiology found. Although most of the identified genetic variants were de novo (that is, they arose in the affected individual and were not clearly inherited), some were inherited from carrier parents.3
A number of other recent studies also have investigated genetic causes of CP and similarly have reported that a substantial number of cases are genetic. Several studies that performed chromosomal microarray analysis in individuals with CP found deleterious copy number variants in 10% to 31% of cases.4-6 Genomic variants detectable by exome sequencing have been reported in 15% to 20% of cases.3 In a recent study in Nature Genetics, researchers performed exome sequencing on 250 parent-child “trios” in which the child had CP, and they found that 14% of cases had an associated genetic variant that was thought to be causative.4 These studies all provide consistent evidence that a substantial proportion of CP cases are due to genetic causes.
Contributors to CP risk
Historically, CP was considered to occur largely as a result of perinatal anoxia. In 1862, the British orthopedic surgeon William John Little first reported an association between prematurity, asphyxia, difficult delivery, and CP in a paper presented to the Obstetrical Society of London.7 Subsequently, much effort has gone into the prevention of perinatal asphyxia and birth injury, although our ability to monitor fetal well-being remains limited. Nonreassuring fetal heart rate patterns are nonspecific and can occur for many reasons other than fetal asphyxia. Studies of electronic fetal monitoring have found that continuous monitoring primarily leads to an increase in cesarean delivery with no decrease in CP or infant mortality.8
While some have attributed this to failure to accurately interpret the fetal heart rate tracing, it also may be because a substantial number of CP cases are due to genetic and other causes, and that very few in fact result from preventable intrapartum injury.
The American College of Obstetricians and Gynecologists and the American Academy of Pediatrics agree that knowledge gaps preclude definitive determination that a given case of neonatal encephalopathy is attributable to an acute intrapartum event, and they provide criteria that must be fulfilled to establish a reasonable causal link between an intrapartum event and subsequent long-term neurologic disability.9 However, there continues to be a belief in the medical, scientific, and lay communities that birth asphyxia, secondary to adverse intrapartum events, is the leading cause of CP. A “brain-damaged infant” remains one of the most common malpractice claims, and birth injury one of the highest paid claims. Such claims generally allege that intrapartum asphyxia has caused long-term neurologic sequelae, including CP.
While it is true that prematurity, infection, hypoxia-ischemia, and pre- and perinatal stroke all have been implicated as contributing to CP risk, large population-based studies have shown that birth asphyxia accounts for less than 12% of CP cases.10 Specifically, recent data indicate that acute intrapartum hypoxia-ischemia occurs only in about 6% of CP cases. In other words, it does occur and may contribute to some cases, but this is likely a smaller percent than previously thought, and genetic factors now appear to be far more significant contributors.11
Continue to: Exploring a genetic etiology...
Exploring a genetic etiology
In considering the etiologies of CP, it is important to note that 21% to 40% of individuals with CP have an associated congenital anomaly, suggesting a genetic origin in at least some individuals. Moreover, a 40% heritability has been estimated in CP, which is comparable to the heritability rate for autism spectrum disorders.12
In the recent study by Moreno-De-Luca and colleagues, some of the gene variants detected were previously associated with other forms of neurodevelopmental disability, such as epilepsy and autism spectrum disorder.3 Many individuals in the study cohort were found to have multiple neurologic comorbidities, for example, CP as well as epilepsy, autism spectrum disorder, and/or intellectual disability. The presence of these additional comorbidities increased the likelihood of finding a genetic cause; the authors found that the diagnostic yield ranged from 11.2% with isolated CP to 32.9% with all 3 comorbidities. The yield was highest with CP and intellectual disability and CP with all 3 comorbidities. A few genes were particularly common, and some were reported previously in association with CP and/or other neurodevelopmental disorders. In some patients, variants were found in genes or gene regions associated with disorders that do not frequently include CP, such as Rett syndrome.3
Implications for ObGyns
The data from the study by Moreno-De-Luca and colleagues are interesting and relevant to pediatricians, neurologists, and geneticists, as well as obstetricians. Understanding the cause of any disease or disorder improves care, including counseling regarding the cause, the appropriate interventions or therapy, and in some families, the recurrence risk in another pregnancy. The treatment for CP has not changed significantly in many years. Increasingly, detection of an underlying genetic cause can guide precision treatments; thus, the detection of specific gene variants allows a targeted approach to therapy.
Identification of a genetic cause also can significantly impact recurrence risk counseling and prenatal diagnosis options in another pregnancy. In general, the empiric recurrence risk of CP is quoted as 1% to 2%,13 and with de novo variants this does not change. However, with inherited variants the recurrence risk in future children is substantially higher. While 72% of the genetic variants associated with CP in the Moreno-De-Luca study were de novo with a low recurrence risk, in the other 28% the mode of inheritance indicated a substantial risk of recurrence (25%–50%) in another pregnancy.3 Detecting such causative variant(s) allows not only accurate counseling about recurrence risk but also preimplantation genetic testing or prenatal diagnosis when recurrence risk is high.
In the field of obstetrics, the debate about the etiology of CP is important largely due to the medicolegal implications. Patient-oriented information on the internet often states that CP is caused by damage to the child’s brain just before, during, or soon after birth, supporting potential blame of those providing care during those times. Patient-oriented websites regarding CP do not list genetic disorders among the causes but rather include primarily environmental factors, such as prematurity, low birth weight, in utero infections, anoxia or other brain injury, or perinatal stroke. Even the Centers for Disease Control and Prevention website lists brain damage as the primary etiology of CP.14 Hopefully, these new data will increase a broader understanding of this condition.
Exome sequencing is now recommended as a first-tier test for individuals with many neurodevelopmental disorders, including epilepsy, intellectual disability, and autism spectrum disorder.15 However, comprehensive genetic testing is not typically recommended or performed in cases of CP. Based on recent data, including the report by Moreno-De-Luca and colleagues, it would seem that CP should be added to the list of disorders for which exome sequencing is ordered, given the similar prevalence and diagnostic yield. ●
- Oskoui M, Coutinho F, Dykeman J, et al. An update on the prevalence of cerebral palsy: a systematic review and meta-analysis. Dev Med Child Neurol. 2013;55:509-519.
- Rosenbaum P, Paneth N, Leviton A, et al. A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol Suppl. 2007;109:8-14.
- Moreno-De-Luca A, Millan F, Pesacreta DR, et al. Molecular diagnostic yield of exome sequencing in patients with cerebral palsy. JAMA. 2021;325:467-475.
- Jin SC, Lewis SA, Bakhtiari S, et al. Mutations disrupting neuritogenesis genes confer risk for cerebral palsy. Nat Genet. 2020;52:1046-1056.
- Segel R, Ben-Pazi H, Zeligson S, et al. Copy number variations in cryptogenic cerebral palsy. Neurology. 2015;84:1660-1668.
- McMichael G, Girirrajan S, Moreno-De-Luca A, et al. Rare copy number variation in cerebral palsy. Eur J Hum Genet. 2014;22:40-45.
- Little WJ. On the influence of abnormal parturition, difficult labours, premature births, and asphyxia neonatorum, on the mental and physical condition of the child, especially in relation to deformities. Trans Obstet Soc Lond. 1862;3:293-344.
- Alfirevic Z, Devane D, Gyte GM. Continuous cardiotocography (CTG) as a form of electronic fetal monitoring (EFM) for fetal assessment during labour. Cochrane Database Syst Rev. 2013;5;CD006066.
- American College of Obstetricians and Gynecologists. Executive summary: neonatal encephalopathy and neurologic outcome second edition. Report of the American College of Obstetricians and Gynecologists’ Task Force on Neonatal Encephalopathy. Obstet Gynecol. 2014;123:896- 901.
- Ellenberg JH, Nelson KB. The association of cerebral palsy with birth asphyxia: a definitional quagmire. Dev Med Child Neurol. 2013;55:210- 216.
- Himmelmann K, Uvebrant P. The panorama of cerebral palsy in Sweden part XII shows that patterns changed in the birth years 2007–2010. Acta Paediatr. 2018;107: 462-468.
- Petterson B, Stanley F, Henderson D. Cerebral palsy in multiple births in Western Australia: genetic aspects. Am J Med Genet. 1990;37:346- 351.
- Korzeniewski SJ, Slaughter J, Lenski M, et al. The complex aetiology of cerebral palsy. Nat Rev Neurol. 2018;14:528-543.
- Centers for Disease Control and Prevention. Causes and risk factors of cerebral palsy. https:// www.cdc.gov/ncbddd/cp/causes.html. Accessed March 23, 2021.
- Srivastava S, Love-Nichols JA, Dies KA, et al; NDD Exome Scoping Review Work Group. Meta-analysis and multidisciplinary consensus statement: exome sequencing is a first-tier clinical diagnostic test for individuals with neurodevelopmental disorders. Genet Med. 2019;21:2413-2421.
Cerebral palsy (CP) is the most common cause of severe neurodisability in children, and it occurs in about 2 to 3 per 1,000 births worldwide.1 This nonprogressive disorder is characterized by symptoms that include spasticity, dystonia, choreoathetosis, and/or ataxia that are evident in the first few years of life. While many perinatal variables have been associated with CP, in most cases a specific cause is not identified.
Other neurodevelopmental disorders, such as intellectual disability, epilepsy, and autism spectrum disorder, are often associated with CP.2 These other neurodevelopmental disorders are often genetic, and this has raised the question as to whether CP also might have a substantial genetic component, although this has not been investigated in any significant way until recently. This topic is of great interest to the obstetric community, given that CP often is attributed to obstetric events, including mismanagement of labor and delivery.
Emerging evidence of a genetic-CP association
In an article published recently in JAMA, Moreno-De-Luca and colleagues sought to determine the diagnostic yield of exome sequencing for CP.3 This large cross-sectional study included results of exome sequencing performed in 2 settings. The first setting was a commercial laboratory in which samples were sent for analysis due to a diagnosis of CP, primarily in children (n = 1,345) with a median age of 8.8 years. A second cohort, recruited from a neurodevelopmental disorders clinic at Geisinger, included primarily adults (n = 181) with a median age of 41.9 years.
As is standard in exome sequencing, results were considered likely causative if they were classified as pathogenic or likely pathogenic based on criteria of the American College of Genetics and Genomics. In the laboratory group, 32.7% (440 of 1,345) had a genetic cause of the CP identified, while in the clinic group, 10.5% (19 of 181) had a genetic etiology found. Although most of the identified genetic variants were de novo (that is, they arose in the affected individual and were not clearly inherited), some were inherited from carrier parents.3
A number of other recent studies also have investigated genetic causes of CP and similarly have reported that a substantial number of cases are genetic. Several studies that performed chromosomal microarray analysis in individuals with CP found deleterious copy number variants in 10% to 31% of cases.4-6 Genomic variants detectable by exome sequencing have been reported in 15% to 20% of cases.3 In a recent study in Nature Genetics, researchers performed exome sequencing on 250 parent-child “trios” in which the child had CP, and they found that 14% of cases had an associated genetic variant that was thought to be causative.4 These studies all provide consistent evidence that a substantial proportion of CP cases are due to genetic causes.
Contributors to CP risk
Historically, CP was considered to occur largely as a result of perinatal anoxia. In 1862, the British orthopedic surgeon William John Little first reported an association between prematurity, asphyxia, difficult delivery, and CP in a paper presented to the Obstetrical Society of London.7 Subsequently, much effort has gone into the prevention of perinatal asphyxia and birth injury, although our ability to monitor fetal well-being remains limited. Nonreassuring fetal heart rate patterns are nonspecific and can occur for many reasons other than fetal asphyxia. Studies of electronic fetal monitoring have found that continuous monitoring primarily leads to an increase in cesarean delivery with no decrease in CP or infant mortality.8
While some have attributed this to failure to accurately interpret the fetal heart rate tracing, it also may be because a substantial number of CP cases are due to genetic and other causes, and that very few in fact result from preventable intrapartum injury.
The American College of Obstetricians and Gynecologists and the American Academy of Pediatrics agree that knowledge gaps preclude definitive determination that a given case of neonatal encephalopathy is attributable to an acute intrapartum event, and they provide criteria that must be fulfilled to establish a reasonable causal link between an intrapartum event and subsequent long-term neurologic disability.9 However, there continues to be a belief in the medical, scientific, and lay communities that birth asphyxia, secondary to adverse intrapartum events, is the leading cause of CP. A “brain-damaged infant” remains one of the most common malpractice claims, and birth injury one of the highest paid claims. Such claims generally allege that intrapartum asphyxia has caused long-term neurologic sequelae, including CP.
While it is true that prematurity, infection, hypoxia-ischemia, and pre- and perinatal stroke all have been implicated as contributing to CP risk, large population-based studies have shown that birth asphyxia accounts for less than 12% of CP cases.10 Specifically, recent data indicate that acute intrapartum hypoxia-ischemia occurs only in about 6% of CP cases. In other words, it does occur and may contribute to some cases, but this is likely a smaller percent than previously thought, and genetic factors now appear to be far more significant contributors.11
Continue to: Exploring a genetic etiology...
Exploring a genetic etiology
In considering the etiologies of CP, it is important to note that 21% to 40% of individuals with CP have an associated congenital anomaly, suggesting a genetic origin in at least some individuals. Moreover, a 40% heritability has been estimated in CP, which is comparable to the heritability rate for autism spectrum disorders.12
In the recent study by Moreno-De-Luca and colleagues, some of the gene variants detected were previously associated with other forms of neurodevelopmental disability, such as epilepsy and autism spectrum disorder.3 Many individuals in the study cohort were found to have multiple neurologic comorbidities, for example, CP as well as epilepsy, autism spectrum disorder, and/or intellectual disability. The presence of these additional comorbidities increased the likelihood of finding a genetic cause; the authors found that the diagnostic yield ranged from 11.2% with isolated CP to 32.9% with all 3 comorbidities. The yield was highest with CP and intellectual disability and CP with all 3 comorbidities. A few genes were particularly common, and some were reported previously in association with CP and/or other neurodevelopmental disorders. In some patients, variants were found in genes or gene regions associated with disorders that do not frequently include CP, such as Rett syndrome.3
Implications for ObGyns
The data from the study by Moreno-De-Luca and colleagues are interesting and relevant to pediatricians, neurologists, and geneticists, as well as obstetricians. Understanding the cause of any disease or disorder improves care, including counseling regarding the cause, the appropriate interventions or therapy, and in some families, the recurrence risk in another pregnancy. The treatment for CP has not changed significantly in many years. Increasingly, detection of an underlying genetic cause can guide precision treatments; thus, the detection of specific gene variants allows a targeted approach to therapy.
Identification of a genetic cause also can significantly impact recurrence risk counseling and prenatal diagnosis options in another pregnancy. In general, the empiric recurrence risk of CP is quoted as 1% to 2%,13 and with de novo variants this does not change. However, with inherited variants the recurrence risk in future children is substantially higher. While 72% of the genetic variants associated with CP in the Moreno-De-Luca study were de novo with a low recurrence risk, in the other 28% the mode of inheritance indicated a substantial risk of recurrence (25%–50%) in another pregnancy.3 Detecting such causative variant(s) allows not only accurate counseling about recurrence risk but also preimplantation genetic testing or prenatal diagnosis when recurrence risk is high.
In the field of obstetrics, the debate about the etiology of CP is important largely due to the medicolegal implications. Patient-oriented information on the internet often states that CP is caused by damage to the child’s brain just before, during, or soon after birth, supporting potential blame of those providing care during those times. Patient-oriented websites regarding CP do not list genetic disorders among the causes but rather include primarily environmental factors, such as prematurity, low birth weight, in utero infections, anoxia or other brain injury, or perinatal stroke. Even the Centers for Disease Control and Prevention website lists brain damage as the primary etiology of CP.14 Hopefully, these new data will increase a broader understanding of this condition.
Exome sequencing is now recommended as a first-tier test for individuals with many neurodevelopmental disorders, including epilepsy, intellectual disability, and autism spectrum disorder.15 However, comprehensive genetic testing is not typically recommended or performed in cases of CP. Based on recent data, including the report by Moreno-De-Luca and colleagues, it would seem that CP should be added to the list of disorders for which exome sequencing is ordered, given the similar prevalence and diagnostic yield. ●
Cerebral palsy (CP) is the most common cause of severe neurodisability in children, and it occurs in about 2 to 3 per 1,000 births worldwide.1 This nonprogressive disorder is characterized by symptoms that include spasticity, dystonia, choreoathetosis, and/or ataxia that are evident in the first few years of life. While many perinatal variables have been associated with CP, in most cases a specific cause is not identified.
Other neurodevelopmental disorders, such as intellectual disability, epilepsy, and autism spectrum disorder, are often associated with CP.2 These other neurodevelopmental disorders are often genetic, and this has raised the question as to whether CP also might have a substantial genetic component, although this has not been investigated in any significant way until recently. This topic is of great interest to the obstetric community, given that CP often is attributed to obstetric events, including mismanagement of labor and delivery.
Emerging evidence of a genetic-CP association
In an article published recently in JAMA, Moreno-De-Luca and colleagues sought to determine the diagnostic yield of exome sequencing for CP.3 This large cross-sectional study included results of exome sequencing performed in 2 settings. The first setting was a commercial laboratory in which samples were sent for analysis due to a diagnosis of CP, primarily in children (n = 1,345) with a median age of 8.8 years. A second cohort, recruited from a neurodevelopmental disorders clinic at Geisinger, included primarily adults (n = 181) with a median age of 41.9 years.
As is standard in exome sequencing, results were considered likely causative if they were classified as pathogenic or likely pathogenic based on criteria of the American College of Genetics and Genomics. In the laboratory group, 32.7% (440 of 1,345) had a genetic cause of the CP identified, while in the clinic group, 10.5% (19 of 181) had a genetic etiology found. Although most of the identified genetic variants were de novo (that is, they arose in the affected individual and were not clearly inherited), some were inherited from carrier parents.3
A number of other recent studies also have investigated genetic causes of CP and similarly have reported that a substantial number of cases are genetic. Several studies that performed chromosomal microarray analysis in individuals with CP found deleterious copy number variants in 10% to 31% of cases.4-6 Genomic variants detectable by exome sequencing have been reported in 15% to 20% of cases.3 In a recent study in Nature Genetics, researchers performed exome sequencing on 250 parent-child “trios” in which the child had CP, and they found that 14% of cases had an associated genetic variant that was thought to be causative.4 These studies all provide consistent evidence that a substantial proportion of CP cases are due to genetic causes.
Contributors to CP risk
Historically, CP was considered to occur largely as a result of perinatal anoxia. In 1862, the British orthopedic surgeon William John Little first reported an association between prematurity, asphyxia, difficult delivery, and CP in a paper presented to the Obstetrical Society of London.7 Subsequently, much effort has gone into the prevention of perinatal asphyxia and birth injury, although our ability to monitor fetal well-being remains limited. Nonreassuring fetal heart rate patterns are nonspecific and can occur for many reasons other than fetal asphyxia. Studies of electronic fetal monitoring have found that continuous monitoring primarily leads to an increase in cesarean delivery with no decrease in CP or infant mortality.8
While some have attributed this to failure to accurately interpret the fetal heart rate tracing, it also may be because a substantial number of CP cases are due to genetic and other causes, and that very few in fact result from preventable intrapartum injury.
The American College of Obstetricians and Gynecologists and the American Academy of Pediatrics agree that knowledge gaps preclude definitive determination that a given case of neonatal encephalopathy is attributable to an acute intrapartum event, and they provide criteria that must be fulfilled to establish a reasonable causal link between an intrapartum event and subsequent long-term neurologic disability.9 However, there continues to be a belief in the medical, scientific, and lay communities that birth asphyxia, secondary to adverse intrapartum events, is the leading cause of CP. A “brain-damaged infant” remains one of the most common malpractice claims, and birth injury one of the highest paid claims. Such claims generally allege that intrapartum asphyxia has caused long-term neurologic sequelae, including CP.
While it is true that prematurity, infection, hypoxia-ischemia, and pre- and perinatal stroke all have been implicated as contributing to CP risk, large population-based studies have shown that birth asphyxia accounts for less than 12% of CP cases.10 Specifically, recent data indicate that acute intrapartum hypoxia-ischemia occurs only in about 6% of CP cases. In other words, it does occur and may contribute to some cases, but this is likely a smaller percent than previously thought, and genetic factors now appear to be far more significant contributors.11
Continue to: Exploring a genetic etiology...
Exploring a genetic etiology
In considering the etiologies of CP, it is important to note that 21% to 40% of individuals with CP have an associated congenital anomaly, suggesting a genetic origin in at least some individuals. Moreover, a 40% heritability has been estimated in CP, which is comparable to the heritability rate for autism spectrum disorders.12
In the recent study by Moreno-De-Luca and colleagues, some of the gene variants detected were previously associated with other forms of neurodevelopmental disability, such as epilepsy and autism spectrum disorder.3 Many individuals in the study cohort were found to have multiple neurologic comorbidities, for example, CP as well as epilepsy, autism spectrum disorder, and/or intellectual disability. The presence of these additional comorbidities increased the likelihood of finding a genetic cause; the authors found that the diagnostic yield ranged from 11.2% with isolated CP to 32.9% with all 3 comorbidities. The yield was highest with CP and intellectual disability and CP with all 3 comorbidities. A few genes were particularly common, and some were reported previously in association with CP and/or other neurodevelopmental disorders. In some patients, variants were found in genes or gene regions associated with disorders that do not frequently include CP, such as Rett syndrome.3
Implications for ObGyns
The data from the study by Moreno-De-Luca and colleagues are interesting and relevant to pediatricians, neurologists, and geneticists, as well as obstetricians. Understanding the cause of any disease or disorder improves care, including counseling regarding the cause, the appropriate interventions or therapy, and in some families, the recurrence risk in another pregnancy. The treatment for CP has not changed significantly in many years. Increasingly, detection of an underlying genetic cause can guide precision treatments; thus, the detection of specific gene variants allows a targeted approach to therapy.
Identification of a genetic cause also can significantly impact recurrence risk counseling and prenatal diagnosis options in another pregnancy. In general, the empiric recurrence risk of CP is quoted as 1% to 2%,13 and with de novo variants this does not change. However, with inherited variants the recurrence risk in future children is substantially higher. While 72% of the genetic variants associated with CP in the Moreno-De-Luca study were de novo with a low recurrence risk, in the other 28% the mode of inheritance indicated a substantial risk of recurrence (25%–50%) in another pregnancy.3 Detecting such causative variant(s) allows not only accurate counseling about recurrence risk but also preimplantation genetic testing or prenatal diagnosis when recurrence risk is high.
In the field of obstetrics, the debate about the etiology of CP is important largely due to the medicolegal implications. Patient-oriented information on the internet often states that CP is caused by damage to the child’s brain just before, during, or soon after birth, supporting potential blame of those providing care during those times. Patient-oriented websites regarding CP do not list genetic disorders among the causes but rather include primarily environmental factors, such as prematurity, low birth weight, in utero infections, anoxia or other brain injury, or perinatal stroke. Even the Centers for Disease Control and Prevention website lists brain damage as the primary etiology of CP.14 Hopefully, these new data will increase a broader understanding of this condition.
Exome sequencing is now recommended as a first-tier test for individuals with many neurodevelopmental disorders, including epilepsy, intellectual disability, and autism spectrum disorder.15 However, comprehensive genetic testing is not typically recommended or performed in cases of CP. Based on recent data, including the report by Moreno-De-Luca and colleagues, it would seem that CP should be added to the list of disorders for which exome sequencing is ordered, given the similar prevalence and diagnostic yield. ●
- Oskoui M, Coutinho F, Dykeman J, et al. An update on the prevalence of cerebral palsy: a systematic review and meta-analysis. Dev Med Child Neurol. 2013;55:509-519.
- Rosenbaum P, Paneth N, Leviton A, et al. A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol Suppl. 2007;109:8-14.
- Moreno-De-Luca A, Millan F, Pesacreta DR, et al. Molecular diagnostic yield of exome sequencing in patients with cerebral palsy. JAMA. 2021;325:467-475.
- Jin SC, Lewis SA, Bakhtiari S, et al. Mutations disrupting neuritogenesis genes confer risk for cerebral palsy. Nat Genet. 2020;52:1046-1056.
- Segel R, Ben-Pazi H, Zeligson S, et al. Copy number variations in cryptogenic cerebral palsy. Neurology. 2015;84:1660-1668.
- McMichael G, Girirrajan S, Moreno-De-Luca A, et al. Rare copy number variation in cerebral palsy. Eur J Hum Genet. 2014;22:40-45.
- Little WJ. On the influence of abnormal parturition, difficult labours, premature births, and asphyxia neonatorum, on the mental and physical condition of the child, especially in relation to deformities. Trans Obstet Soc Lond. 1862;3:293-344.
- Alfirevic Z, Devane D, Gyte GM. Continuous cardiotocography (CTG) as a form of electronic fetal monitoring (EFM) for fetal assessment during labour. Cochrane Database Syst Rev. 2013;5;CD006066.
- American College of Obstetricians and Gynecologists. Executive summary: neonatal encephalopathy and neurologic outcome second edition. Report of the American College of Obstetricians and Gynecologists’ Task Force on Neonatal Encephalopathy. Obstet Gynecol. 2014;123:896- 901.
- Ellenberg JH, Nelson KB. The association of cerebral palsy with birth asphyxia: a definitional quagmire. Dev Med Child Neurol. 2013;55:210- 216.
- Himmelmann K, Uvebrant P. The panorama of cerebral palsy in Sweden part XII shows that patterns changed in the birth years 2007–2010. Acta Paediatr. 2018;107: 462-468.
- Petterson B, Stanley F, Henderson D. Cerebral palsy in multiple births in Western Australia: genetic aspects. Am J Med Genet. 1990;37:346- 351.
- Korzeniewski SJ, Slaughter J, Lenski M, et al. The complex aetiology of cerebral palsy. Nat Rev Neurol. 2018;14:528-543.
- Centers for Disease Control and Prevention. Causes and risk factors of cerebral palsy. https:// www.cdc.gov/ncbddd/cp/causes.html. Accessed March 23, 2021.
- Srivastava S, Love-Nichols JA, Dies KA, et al; NDD Exome Scoping Review Work Group. Meta-analysis and multidisciplinary consensus statement: exome sequencing is a first-tier clinical diagnostic test for individuals with neurodevelopmental disorders. Genet Med. 2019;21:2413-2421.
- Oskoui M, Coutinho F, Dykeman J, et al. An update on the prevalence of cerebral palsy: a systematic review and meta-analysis. Dev Med Child Neurol. 2013;55:509-519.
- Rosenbaum P, Paneth N, Leviton A, et al. A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol Suppl. 2007;109:8-14.
- Moreno-De-Luca A, Millan F, Pesacreta DR, et al. Molecular diagnostic yield of exome sequencing in patients with cerebral palsy. JAMA. 2021;325:467-475.
- Jin SC, Lewis SA, Bakhtiari S, et al. Mutations disrupting neuritogenesis genes confer risk for cerebral palsy. Nat Genet. 2020;52:1046-1056.
- Segel R, Ben-Pazi H, Zeligson S, et al. Copy number variations in cryptogenic cerebral palsy. Neurology. 2015;84:1660-1668.
- McMichael G, Girirrajan S, Moreno-De-Luca A, et al. Rare copy number variation in cerebral palsy. Eur J Hum Genet. 2014;22:40-45.
- Little WJ. On the influence of abnormal parturition, difficult labours, premature births, and asphyxia neonatorum, on the mental and physical condition of the child, especially in relation to deformities. Trans Obstet Soc Lond. 1862;3:293-344.
- Alfirevic Z, Devane D, Gyte GM. Continuous cardiotocography (CTG) as a form of electronic fetal monitoring (EFM) for fetal assessment during labour. Cochrane Database Syst Rev. 2013;5;CD006066.
- American College of Obstetricians and Gynecologists. Executive summary: neonatal encephalopathy and neurologic outcome second edition. Report of the American College of Obstetricians and Gynecologists’ Task Force on Neonatal Encephalopathy. Obstet Gynecol. 2014;123:896- 901.
- Ellenberg JH, Nelson KB. The association of cerebral palsy with birth asphyxia: a definitional quagmire. Dev Med Child Neurol. 2013;55:210- 216.
- Himmelmann K, Uvebrant P. The panorama of cerebral palsy in Sweden part XII shows that patterns changed in the birth years 2007–2010. Acta Paediatr. 2018;107: 462-468.
- Petterson B, Stanley F, Henderson D. Cerebral palsy in multiple births in Western Australia: genetic aspects. Am J Med Genet. 1990;37:346- 351.
- Korzeniewski SJ, Slaughter J, Lenski M, et al. The complex aetiology of cerebral palsy. Nat Rev Neurol. 2018;14:528-543.
- Centers for Disease Control and Prevention. Causes and risk factors of cerebral palsy. https:// www.cdc.gov/ncbddd/cp/causes.html. Accessed March 23, 2021.
- Srivastava S, Love-Nichols JA, Dies KA, et al; NDD Exome Scoping Review Work Group. Meta-analysis and multidisciplinary consensus statement: exome sequencing is a first-tier clinical diagnostic test for individuals with neurodevelopmental disorders. Genet Med. 2019;21:2413-2421.
Systemic racism is a cause of health disparities
I applaud the joint statement by the editors of the family medicine journals to commit to the eradication of systemic racism in medicine ( J Fam Pract . 2021;70:3 -4). These are crucial times in our history, where proactive change is necessary. The leadership they have shown is important.
No one wants health disparities. So, to eliminate them, we need to know what they are and where they came from. In my presentations on health disparities to students, residents, and health care providers, I use 3 definitions of health disparities. My definitions are slightly different from those proposed in the seminal report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, from the National Academy of Medicine (then Institute of Medicine).1 I like to think that my definitions elicit the information needed to guide change.
The first definition focuses on health statistics. When there are different outcomes for different demographic groups for the same disease, that is a disparity. This could be Black vs white, male vs female, or 1 zip code vs another.2 We owe ourselves an explanation for these differences if we are to be able to propose solutions.
Second, there are disparities in the provision of health care. If there are 2 individuals who present with the exact same symptoms, we need to ask ourselves why they would be treated differently. Even in systems where insurance status is the same, there are documented differences in care. A well-studied example of this is pain. In 1 such study, a meta-analysis showed that Blacks were less likely than whites to receive medication for acute pain in the emergency department (OR = 0.60 [95% CI, 0.43-0.83]).3 Other examples of differences by race include cardiac services,4 lung cancer screening,5 and stroke interventions.6
The third definition of health disparities involves differences in health-seeking behavior. This is not to blame the “victim,” but to understand the reason why the difference exists so that adequate interventions can be designed to improve outcomes. Traditionally, the concept of access referenced whether or not the patient had health insurance. But the provision of health insurance is insufficient to explain issues of access.7
Extrinsic and intrinsic factors at work. Factors related to insurance are an example of the extrinsic factors related to access. However, there are intrinsic factors related to access, most of which involve health literacy. We must ask ourselves: What are the best practices to educate patients to get the care they need? I will take this 1 step further; it is the duty of all health care professionals to improve health literacy 1 patient, 1 community at a time.
The next point that I make in my presentations on health disparities is that if you control for socioeconomic status, some of the health disparities go away. However, they rarely disappear. We measure socioeconomic status in a variety of ways: education, insurance status, income, and wealth. And as would be expected, these variables are usually correlated. We also know that these variables are not distributed equally by race. This is by design. This has been intentional. This has been, in many cases, our country’s policy. This is the result of systemic racism.
Continue to: It is necessary...
It is necessary for us to be willing to accept the toxicity of racism. This we can assess in 2 major ways. First, if we apply the Koch postulates or the Bradford Hill criteria for causation to racism, we can assess the degree to which racism is an explanation for health disparities. These principles offer methods for determining the relationship between risk and outcome.
Second, when we analyze the historical antecedents of health disparities, we find that racism is directly responsible not only for the current toxicity that Black people face today, but for the socioeconomic disparities that continue to exist. Let me give just a few examples.
- The Farm Security Administration was created in 1937 to avoid the collapse of the farming industry. As a compromise to southern legislators, a model was approved to allow local administration of support to farmers that essentially condoned the discrimination that had been occurring and would continue to occur—especially in the South.
- The National Housing Act of 1934 was created to provide stability to the banking industry at a time of national crisis. It subsidized a massive building program, and many of the units had restrictive covenants that prevented the sale to Blacks. It also codified redlining that prevented insured mortgages from being provided to Black communities.
- The Social Security Act of 1935 was created to provide benefits for the elderly and disabled. All workers were included except domestic workers and farm workers—the majority of whom were Black. This was another compromise that was made with southern congressman to get this act passed.
- The Servicemen’s Readjustment Act of 1944 (also known as the GI Bill) was passed to support veterans returning from World War II. Two major functions of the bill were to support educational opportunities for veterans and their families and to support the purchase of homes. From 1945 to 1954, the US added 13 million new homes. In 1946 and 1947, the Veterans Administration financed 40% of all single-family houses in the United States. Additionally, there were educational benefits for veterans to go to college or to learn a trade. These provisions, education, and housing were not equally available to Blacks. Columbia University professor Ira Katznelson called this act and others “affirmative action for whites.” 8
In 2019, the median income in white households was $76,057 and in Black households it was $46,073. 9 So, when we look at disparities of income, we must acknowledge this difference within the context of the current environment and the historical conditions that created these disparities. If we go 1 step further and look at disparities of wealth, we find that in 2019, the median wealth for white families was $188,200 and the median wealth for Black families was $24,100. 10
When one considers that a major contributor of wealth is home ownership, these differences seem logical—particularly related to points 1, 2, and 4 that I've just described. These economic disparities would not be as great today if the 4 examples given here (not to mention numerous other examples) had been administered equitably. The same applies to disparities in housing, employment, and education. Systemic racism is the causative agent. Systemic racism must be neutralized if we are to obtain anything close to health equity. 11
The Centers for Disease Control and Prevention (CDC) has recently taken new steps to recognize the role of racism in health. 12 The CDC plans to use “science to investigate and better understand the intersection of racism and health, and then to take action.” 13
It is time for the entire nation to recognize the links between racism and health outcomes and examine how we can design, implement, and evaluate interventions that will permanently correct these inequities.
1. Institute of Medicine. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care; 2003. Accessed April 22, 2021. https://doi.org/10.17226/10260
2. Life Expectancy: Could where you live influence how long you live? Robert Wood Johnson Foundation. Accessed April 22, 2021. www.rwjf.org/en/library/interactives/whereyouliveaffectshowlongyoulive.html
3. Lee P, Le Saux M, Siegel R, et al. Racial and ethnic disparities in the management of acute pain in US emergency departments: meta-analysis and systematic review. Am J Emerg Med. 2019;37:1770-1777. doi: 10.1016/j.ajem.2019.06.014
4. Youmans QR, Hastings-Spaine L, Princewill O, et al. Disparities in cardiovascular care: past, present, and solutions. Cleve Clin J Med. 2019;86:621-632. doi: 10.3949/ccjm.86a.18088
5. Rivera MP, Katki HA, Tanner NT, et al. Addressing disparities in lung cancer screening eligibility and healthcare access. An official American Thoracic Society statement. Am J Respir Crit Care Med. 2020;202: e95-e112. doi: 10.1164/rccm.202008-3053ST
6. Rinaldo L, Rabinstein AA, Cloft H, et al. Racial and ethnic disparities in the utilization of thrombectomy for acute stroke. Stroke. 2019;50:2428-2432. doi:10.1161/STROKEAHA.118.024651
7. Hall AG, Lemak CH, Steingraber H, et al. Expanding the definition of access: it isn’t just about health insurance. J Health Care Poor Underserved. 2008;19:625-638. doi: 10.1353/hpu.0.0011
8. Katznelson I. When Affirmative Action Was White: An Untold History of Racial Inequality in Twentieth Century America. W. W. Norton & Co; 2006.
9. US Census Bureau. Households by Total Money Income, Race, and Hispanic Origin of Householder: 1967 to 2019. Accessed April 26, 2021. www.census.gov/data/tables/2020/demo/income-poverty/p60-270.html
10. Robb G. Long-standing wealth gap between Black and white Americans remains substantial, Fed data for 2019 show. MarketWatch. September 29, 2020. Accessed April 26, 2021. www.marketwatch.com/story/long-standing-wealth-gap-between-blacks-and-whites-remains-substantial-new-fed-data-for-2019-show-2020-09-28
11. Jones CP. Levels of racism: a theoretic framework and a gardener’s tale. Am J Public Health. 2000;9:1212-1215. doi: 10.2105/ajph.90.8.1212
12. CDC. Health equity: Director’s commentary. April 8, 2021. Accessed April 23, 2021. www.cdc.gov/healthequity/racism-disparities/director-commentary.html
13. CDC. Health equity: CDC’s efforts. April 8, 2021. Accessed April 23, 2021. www.cdc.gov/healthequity/racism-disparities/cdc-efforts.html
I applaud the joint statement by the editors of the family medicine journals to commit to the eradication of systemic racism in medicine ( J Fam Pract . 2021;70:3 -4). These are crucial times in our history, where proactive change is necessary. The leadership they have shown is important.
No one wants health disparities. So, to eliminate them, we need to know what they are and where they came from. In my presentations on health disparities to students, residents, and health care providers, I use 3 definitions of health disparities. My definitions are slightly different from those proposed in the seminal report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, from the National Academy of Medicine (then Institute of Medicine).1 I like to think that my definitions elicit the information needed to guide change.
The first definition focuses on health statistics. When there are different outcomes for different demographic groups for the same disease, that is a disparity. This could be Black vs white, male vs female, or 1 zip code vs another.2 We owe ourselves an explanation for these differences if we are to be able to propose solutions.
Second, there are disparities in the provision of health care. If there are 2 individuals who present with the exact same symptoms, we need to ask ourselves why they would be treated differently. Even in systems where insurance status is the same, there are documented differences in care. A well-studied example of this is pain. In 1 such study, a meta-analysis showed that Blacks were less likely than whites to receive medication for acute pain in the emergency department (OR = 0.60 [95% CI, 0.43-0.83]).3 Other examples of differences by race include cardiac services,4 lung cancer screening,5 and stroke interventions.6
The third definition of health disparities involves differences in health-seeking behavior. This is not to blame the “victim,” but to understand the reason why the difference exists so that adequate interventions can be designed to improve outcomes. Traditionally, the concept of access referenced whether or not the patient had health insurance. But the provision of health insurance is insufficient to explain issues of access.7
Extrinsic and intrinsic factors at work. Factors related to insurance are an example of the extrinsic factors related to access. However, there are intrinsic factors related to access, most of which involve health literacy. We must ask ourselves: What are the best practices to educate patients to get the care they need? I will take this 1 step further; it is the duty of all health care professionals to improve health literacy 1 patient, 1 community at a time.
The next point that I make in my presentations on health disparities is that if you control for socioeconomic status, some of the health disparities go away. However, they rarely disappear. We measure socioeconomic status in a variety of ways: education, insurance status, income, and wealth. And as would be expected, these variables are usually correlated. We also know that these variables are not distributed equally by race. This is by design. This has been intentional. This has been, in many cases, our country’s policy. This is the result of systemic racism.
Continue to: It is necessary...
It is necessary for us to be willing to accept the toxicity of racism. This we can assess in 2 major ways. First, if we apply the Koch postulates or the Bradford Hill criteria for causation to racism, we can assess the degree to which racism is an explanation for health disparities. These principles offer methods for determining the relationship between risk and outcome.
Second, when we analyze the historical antecedents of health disparities, we find that racism is directly responsible not only for the current toxicity that Black people face today, but for the socioeconomic disparities that continue to exist. Let me give just a few examples.
- The Farm Security Administration was created in 1937 to avoid the collapse of the farming industry. As a compromise to southern legislators, a model was approved to allow local administration of support to farmers that essentially condoned the discrimination that had been occurring and would continue to occur—especially in the South.
- The National Housing Act of 1934 was created to provide stability to the banking industry at a time of national crisis. It subsidized a massive building program, and many of the units had restrictive covenants that prevented the sale to Blacks. It also codified redlining that prevented insured mortgages from being provided to Black communities.
- The Social Security Act of 1935 was created to provide benefits for the elderly and disabled. All workers were included except domestic workers and farm workers—the majority of whom were Black. This was another compromise that was made with southern congressman to get this act passed.
- The Servicemen’s Readjustment Act of 1944 (also known as the GI Bill) was passed to support veterans returning from World War II. Two major functions of the bill were to support educational opportunities for veterans and their families and to support the purchase of homes. From 1945 to 1954, the US added 13 million new homes. In 1946 and 1947, the Veterans Administration financed 40% of all single-family houses in the United States. Additionally, there were educational benefits for veterans to go to college or to learn a trade. These provisions, education, and housing were not equally available to Blacks. Columbia University professor Ira Katznelson called this act and others “affirmative action for whites.” 8
In 2019, the median income in white households was $76,057 and in Black households it was $46,073. 9 So, when we look at disparities of income, we must acknowledge this difference within the context of the current environment and the historical conditions that created these disparities. If we go 1 step further and look at disparities of wealth, we find that in 2019, the median wealth for white families was $188,200 and the median wealth for Black families was $24,100. 10
When one considers that a major contributor of wealth is home ownership, these differences seem logical—particularly related to points 1, 2, and 4 that I've just described. These economic disparities would not be as great today if the 4 examples given here (not to mention numerous other examples) had been administered equitably. The same applies to disparities in housing, employment, and education. Systemic racism is the causative agent. Systemic racism must be neutralized if we are to obtain anything close to health equity. 11
The Centers for Disease Control and Prevention (CDC) has recently taken new steps to recognize the role of racism in health. 12 The CDC plans to use “science to investigate and better understand the intersection of racism and health, and then to take action.” 13
It is time for the entire nation to recognize the links between racism and health outcomes and examine how we can design, implement, and evaluate interventions that will permanently correct these inequities.
I applaud the joint statement by the editors of the family medicine journals to commit to the eradication of systemic racism in medicine ( J Fam Pract . 2021;70:3 -4). These are crucial times in our history, where proactive change is necessary. The leadership they have shown is important.
No one wants health disparities. So, to eliminate them, we need to know what they are and where they came from. In my presentations on health disparities to students, residents, and health care providers, I use 3 definitions of health disparities. My definitions are slightly different from those proposed in the seminal report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, from the National Academy of Medicine (then Institute of Medicine).1 I like to think that my definitions elicit the information needed to guide change.
The first definition focuses on health statistics. When there are different outcomes for different demographic groups for the same disease, that is a disparity. This could be Black vs white, male vs female, or 1 zip code vs another.2 We owe ourselves an explanation for these differences if we are to be able to propose solutions.
Second, there are disparities in the provision of health care. If there are 2 individuals who present with the exact same symptoms, we need to ask ourselves why they would be treated differently. Even in systems where insurance status is the same, there are documented differences in care. A well-studied example of this is pain. In 1 such study, a meta-analysis showed that Blacks were less likely than whites to receive medication for acute pain in the emergency department (OR = 0.60 [95% CI, 0.43-0.83]).3 Other examples of differences by race include cardiac services,4 lung cancer screening,5 and stroke interventions.6
The third definition of health disparities involves differences in health-seeking behavior. This is not to blame the “victim,” but to understand the reason why the difference exists so that adequate interventions can be designed to improve outcomes. Traditionally, the concept of access referenced whether or not the patient had health insurance. But the provision of health insurance is insufficient to explain issues of access.7
Extrinsic and intrinsic factors at work. Factors related to insurance are an example of the extrinsic factors related to access. However, there are intrinsic factors related to access, most of which involve health literacy. We must ask ourselves: What are the best practices to educate patients to get the care they need? I will take this 1 step further; it is the duty of all health care professionals to improve health literacy 1 patient, 1 community at a time.
The next point that I make in my presentations on health disparities is that if you control for socioeconomic status, some of the health disparities go away. However, they rarely disappear. We measure socioeconomic status in a variety of ways: education, insurance status, income, and wealth. And as would be expected, these variables are usually correlated. We also know that these variables are not distributed equally by race. This is by design. This has been intentional. This has been, in many cases, our country’s policy. This is the result of systemic racism.
Continue to: It is necessary...
It is necessary for us to be willing to accept the toxicity of racism. This we can assess in 2 major ways. First, if we apply the Koch postulates or the Bradford Hill criteria for causation to racism, we can assess the degree to which racism is an explanation for health disparities. These principles offer methods for determining the relationship between risk and outcome.
Second, when we analyze the historical antecedents of health disparities, we find that racism is directly responsible not only for the current toxicity that Black people face today, but for the socioeconomic disparities that continue to exist. Let me give just a few examples.
- The Farm Security Administration was created in 1937 to avoid the collapse of the farming industry. As a compromise to southern legislators, a model was approved to allow local administration of support to farmers that essentially condoned the discrimination that had been occurring and would continue to occur—especially in the South.
- The National Housing Act of 1934 was created to provide stability to the banking industry at a time of national crisis. It subsidized a massive building program, and many of the units had restrictive covenants that prevented the sale to Blacks. It also codified redlining that prevented insured mortgages from being provided to Black communities.
- The Social Security Act of 1935 was created to provide benefits for the elderly and disabled. All workers were included except domestic workers and farm workers—the majority of whom were Black. This was another compromise that was made with southern congressman to get this act passed.
- The Servicemen’s Readjustment Act of 1944 (also known as the GI Bill) was passed to support veterans returning from World War II. Two major functions of the bill were to support educational opportunities for veterans and their families and to support the purchase of homes. From 1945 to 1954, the US added 13 million new homes. In 1946 and 1947, the Veterans Administration financed 40% of all single-family houses in the United States. Additionally, there were educational benefits for veterans to go to college or to learn a trade. These provisions, education, and housing were not equally available to Blacks. Columbia University professor Ira Katznelson called this act and others “affirmative action for whites.” 8
In 2019, the median income in white households was $76,057 and in Black households it was $46,073. 9 So, when we look at disparities of income, we must acknowledge this difference within the context of the current environment and the historical conditions that created these disparities. If we go 1 step further and look at disparities of wealth, we find that in 2019, the median wealth for white families was $188,200 and the median wealth for Black families was $24,100. 10
When one considers that a major contributor of wealth is home ownership, these differences seem logical—particularly related to points 1, 2, and 4 that I've just described. These economic disparities would not be as great today if the 4 examples given here (not to mention numerous other examples) had been administered equitably. The same applies to disparities in housing, employment, and education. Systemic racism is the causative agent. Systemic racism must be neutralized if we are to obtain anything close to health equity. 11
The Centers for Disease Control and Prevention (CDC) has recently taken new steps to recognize the role of racism in health. 12 The CDC plans to use “science to investigate and better understand the intersection of racism and health, and then to take action.” 13
It is time for the entire nation to recognize the links between racism and health outcomes and examine how we can design, implement, and evaluate interventions that will permanently correct these inequities.
1. Institute of Medicine. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care; 2003. Accessed April 22, 2021. https://doi.org/10.17226/10260
2. Life Expectancy: Could where you live influence how long you live? Robert Wood Johnson Foundation. Accessed April 22, 2021. www.rwjf.org/en/library/interactives/whereyouliveaffectshowlongyoulive.html
3. Lee P, Le Saux M, Siegel R, et al. Racial and ethnic disparities in the management of acute pain in US emergency departments: meta-analysis and systematic review. Am J Emerg Med. 2019;37:1770-1777. doi: 10.1016/j.ajem.2019.06.014
4. Youmans QR, Hastings-Spaine L, Princewill O, et al. Disparities in cardiovascular care: past, present, and solutions. Cleve Clin J Med. 2019;86:621-632. doi: 10.3949/ccjm.86a.18088
5. Rivera MP, Katki HA, Tanner NT, et al. Addressing disparities in lung cancer screening eligibility and healthcare access. An official American Thoracic Society statement. Am J Respir Crit Care Med. 2020;202: e95-e112. doi: 10.1164/rccm.202008-3053ST
6. Rinaldo L, Rabinstein AA, Cloft H, et al. Racial and ethnic disparities in the utilization of thrombectomy for acute stroke. Stroke. 2019;50:2428-2432. doi:10.1161/STROKEAHA.118.024651
7. Hall AG, Lemak CH, Steingraber H, et al. Expanding the definition of access: it isn’t just about health insurance. J Health Care Poor Underserved. 2008;19:625-638. doi: 10.1353/hpu.0.0011
8. Katznelson I. When Affirmative Action Was White: An Untold History of Racial Inequality in Twentieth Century America. W. W. Norton & Co; 2006.
9. US Census Bureau. Households by Total Money Income, Race, and Hispanic Origin of Householder: 1967 to 2019. Accessed April 26, 2021. www.census.gov/data/tables/2020/demo/income-poverty/p60-270.html
10. Robb G. Long-standing wealth gap between Black and white Americans remains substantial, Fed data for 2019 show. MarketWatch. September 29, 2020. Accessed April 26, 2021. www.marketwatch.com/story/long-standing-wealth-gap-between-blacks-and-whites-remains-substantial-new-fed-data-for-2019-show-2020-09-28
11. Jones CP. Levels of racism: a theoretic framework and a gardener’s tale. Am J Public Health. 2000;9:1212-1215. doi: 10.2105/ajph.90.8.1212
12. CDC. Health equity: Director’s commentary. April 8, 2021. Accessed April 23, 2021. www.cdc.gov/healthequity/racism-disparities/director-commentary.html
13. CDC. Health equity: CDC’s efforts. April 8, 2021. Accessed April 23, 2021. www.cdc.gov/healthequity/racism-disparities/cdc-efforts.html
1. Institute of Medicine. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care; 2003. Accessed April 22, 2021. https://doi.org/10.17226/10260
2. Life Expectancy: Could where you live influence how long you live? Robert Wood Johnson Foundation. Accessed April 22, 2021. www.rwjf.org/en/library/interactives/whereyouliveaffectshowlongyoulive.html
3. Lee P, Le Saux M, Siegel R, et al. Racial and ethnic disparities in the management of acute pain in US emergency departments: meta-analysis and systematic review. Am J Emerg Med. 2019;37:1770-1777. doi: 10.1016/j.ajem.2019.06.014
4. Youmans QR, Hastings-Spaine L, Princewill O, et al. Disparities in cardiovascular care: past, present, and solutions. Cleve Clin J Med. 2019;86:621-632. doi: 10.3949/ccjm.86a.18088
5. Rivera MP, Katki HA, Tanner NT, et al. Addressing disparities in lung cancer screening eligibility and healthcare access. An official American Thoracic Society statement. Am J Respir Crit Care Med. 2020;202: e95-e112. doi: 10.1164/rccm.202008-3053ST
6. Rinaldo L, Rabinstein AA, Cloft H, et al. Racial and ethnic disparities in the utilization of thrombectomy for acute stroke. Stroke. 2019;50:2428-2432. doi:10.1161/STROKEAHA.118.024651
7. Hall AG, Lemak CH, Steingraber H, et al. Expanding the definition of access: it isn’t just about health insurance. J Health Care Poor Underserved. 2008;19:625-638. doi: 10.1353/hpu.0.0011
8. Katznelson I. When Affirmative Action Was White: An Untold History of Racial Inequality in Twentieth Century America. W. W. Norton & Co; 2006.
9. US Census Bureau. Households by Total Money Income, Race, and Hispanic Origin of Householder: 1967 to 2019. Accessed April 26, 2021. www.census.gov/data/tables/2020/demo/income-poverty/p60-270.html
10. Robb G. Long-standing wealth gap between Black and white Americans remains substantial, Fed data for 2019 show. MarketWatch. September 29, 2020. Accessed April 26, 2021. www.marketwatch.com/story/long-standing-wealth-gap-between-blacks-and-whites-remains-substantial-new-fed-data-for-2019-show-2020-09-28
11. Jones CP. Levels of racism: a theoretic framework and a gardener’s tale. Am J Public Health. 2000;9:1212-1215. doi: 10.2105/ajph.90.8.1212
12. CDC. Health equity: Director’s commentary. April 8, 2021. Accessed April 23, 2021. www.cdc.gov/healthequity/racism-disparities/director-commentary.html
13. CDC. Health equity: CDC’s efforts. April 8, 2021. Accessed April 23, 2021. www.cdc.gov/healthequity/racism-disparities/cdc-efforts.html
How I got started in advocacy
Rheumatology News and the Coalition of State Rheumatology Organizations have partnered together to keep rheumatologists regularly informed on the advocacy issues of the day and perhaps inspire those who may be on the fence about finding “room” in their lives for action. This inaugural piece tells how CSRO President Dr. Madelaine (Mattie) A. Feldman views advocacy and how she found her way to action.
As a rheumatologist in private practice for 30 years, with husband and kids (and now grandkids), an active social life, and an exercise regimen, I realized if I were to become active in advocacy I would have to make room for it in my busy schedule. We all come up against the question of where will we find the time for a new hobby, exercise, joining a new organization, or even just eating right? Next comes the priority list discussion. How important is advocacy for my patients, my specialty, and my profession? Ultimately, how important is it for me? Where did that desire to get involved even come from? Why have I become so passionate about the issues?
For me, the answer to these questions goes back to the 1960s when I was growing up in New Orleans. My mom participated in civil rights protests, which did not make our family popular in the neighborhood, back when the KKK put flyers on everyone’s screen door. My mother didn’t care and told me that, no matter what people said, it was our duty to stand up for what was right. That was a long time ago and sadly my mom passed away just a year after I was old enough to vote. Her words have stayed with me and are more important now than ever.
Striving for justice despite how formidable the foe is requires an inner knowing that what you are doing is meaningful and will make a difference maybe not now, maybe not next year. At some point you must believe that your efforts will create a change for the better, small as it may be. My “saying” on Twitter (@MattieRheumMD) is “I’ll keep doing what I’m doing until my cynicism catches up to my passion.”
The story about my mom is just one of the many stories in my life taking me to where I am today. We all have them. I think the reason many of us go into rheumatology may be similar to the reasoning that leads one to advocacy efforts. At this point in time we can’t yet offer a cure, but we can point to a path that leads to improvements in the lives of our patients. I have to remind myself of that, every time there is an advocacy battle ahead, whether with insurance companies or the government ... increments are important.
The four Ps of advocacy
Living with compromise is hard, particularly when working within a system that needs a complete overhaul. Still, compromise is the key to getting anything done. Compromise is one of the four Ps of advocacy. I realize that compromise doesn’t start with a P, but it is such an integral part of advocacy, I am making allowances for it. The other Ps include patience, persistence/perseverance, and passion. I’m sure there are many others that could be part of the P family, like planning and performance, but let’s stick with these.
You don’t need to have all of these qualities when you start on the road to action in advocacy. For example, my passion came first. It developed when my patients could not get access to the treatments they needed. For many reasons, the medications were either unavailable (i.e., not on formulary, tiered very high) or unaffordable (i.e., copay too high, deductible too high). My passion deepened when I saw the hypocrisy within the drug-supply channel and the mistruths being told by those who profit from this channel. It wasn’t the “profit” part that bothered me, as I’m a believer in the free market. But this was not free market, and the companies were actually profiteering on the backs of my patients and justifying it by claiming they were saving the health care system billions of dollars. The fallacy of that claim and the players in this broken system are stories for another day.
Persistence came next for me. If you let up on the message, things might not only stay the same but could get worse. Perseverance is part of persistence because you need it to keep knocking on the same door even after that door is metaphorically (hopefully not literally) slammed in your face. Often, I will feel like a broken record and think that everyone has already heard the issues, not only from me but also from my fellow advocates. But never underestimate how many times a message, particularly on a difficult issue to understand, needs to be heard before it is fully comprehended.
Patience is one of the more difficult attributes to practice when you want action. I want things to happen yesterday – not tomorrow and definitely not next year. I have learned that the wheels of change turn quite slowly in this arena, sometimes pausing for inordinately long periods of time. I realize now that during the long wait, new facts can arise, allowing me to shape a different advocacy approach, one that ultimately bolsters my case. It still is very difficult to hear that a piece of legislation that seemed to be moving forward suddenly died and won’t be heard again until the next session. With patience you move forward with a smile, maybe a half-hearted one, but a smile nonetheless. This just makes life better.
Then there is compromise. This took me the longest to understand, particularly on the issues where my passion ran the deepest. Here is where passion could potentially get in the way of action. Feeling very strongly about an issue makes it difficult to let any piece of your ideal end result fall by the wayside. Here is where the saying “the perfect is the enemy of the good” comes into play. Just because you can’t have it all, doesn’t mean you can’t do good by achieving just part of what you have been striving for. Remember if you seek perfection, without compromise, you may lose the entire battle. Is there such a thing as compromising too much? I think so, but that may just be my passion speaking.
Rheumatology News and the Coalition of State Rheumatology Organizations started this column to keep you informed about current advocacy issues in rheumatology and perhaps inspire those who may be on the fence about finding “room” in their lives for action.
Advocacy doesn’t have to take up much room in your life. It can be as simple as clicking on CSRO.info/map, finding your state, and taking action by writing a letter to your representative on an important piece of legislation, like an accumulator adjustment ban (lots more on that in future columns). Or maybe just finding the time to read this column is all the action you have room for. We all have different amounts of space for any particular activity in our busy lives. It seems one of my stories from childhood created that space for advocacy in my life. I guess you could say it created a “Rheum” for Action.
Dr. Feldman is a rheumatologist in private practice with The Rheumatology Group in New Orleans. She is President of the CSRO, chair of the Alliance for Safe Biologic Medicines, and a past member of the American College of Rheumatology insurance subcommittee. You can reach her at rhnews@mdedge.com.
Rheumatology News and the Coalition of State Rheumatology Organizations have partnered together to keep rheumatologists regularly informed on the advocacy issues of the day and perhaps inspire those who may be on the fence about finding “room” in their lives for action. This inaugural piece tells how CSRO President Dr. Madelaine (Mattie) A. Feldman views advocacy and how she found her way to action.
As a rheumatologist in private practice for 30 years, with husband and kids (and now grandkids), an active social life, and an exercise regimen, I realized if I were to become active in advocacy I would have to make room for it in my busy schedule. We all come up against the question of where will we find the time for a new hobby, exercise, joining a new organization, or even just eating right? Next comes the priority list discussion. How important is advocacy for my patients, my specialty, and my profession? Ultimately, how important is it for me? Where did that desire to get involved even come from? Why have I become so passionate about the issues?
For me, the answer to these questions goes back to the 1960s when I was growing up in New Orleans. My mom participated in civil rights protests, which did not make our family popular in the neighborhood, back when the KKK put flyers on everyone’s screen door. My mother didn’t care and told me that, no matter what people said, it was our duty to stand up for what was right. That was a long time ago and sadly my mom passed away just a year after I was old enough to vote. Her words have stayed with me and are more important now than ever.
Striving for justice despite how formidable the foe is requires an inner knowing that what you are doing is meaningful and will make a difference maybe not now, maybe not next year. At some point you must believe that your efforts will create a change for the better, small as it may be. My “saying” on Twitter (@MattieRheumMD) is “I’ll keep doing what I’m doing until my cynicism catches up to my passion.”
The story about my mom is just one of the many stories in my life taking me to where I am today. We all have them. I think the reason many of us go into rheumatology may be similar to the reasoning that leads one to advocacy efforts. At this point in time we can’t yet offer a cure, but we can point to a path that leads to improvements in the lives of our patients. I have to remind myself of that, every time there is an advocacy battle ahead, whether with insurance companies or the government ... increments are important.
The four Ps of advocacy
Living with compromise is hard, particularly when working within a system that needs a complete overhaul. Still, compromise is the key to getting anything done. Compromise is one of the four Ps of advocacy. I realize that compromise doesn’t start with a P, but it is such an integral part of advocacy, I am making allowances for it. The other Ps include patience, persistence/perseverance, and passion. I’m sure there are many others that could be part of the P family, like planning and performance, but let’s stick with these.
You don’t need to have all of these qualities when you start on the road to action in advocacy. For example, my passion came first. It developed when my patients could not get access to the treatments they needed. For many reasons, the medications were either unavailable (i.e., not on formulary, tiered very high) or unaffordable (i.e., copay too high, deductible too high). My passion deepened when I saw the hypocrisy within the drug-supply channel and the mistruths being told by those who profit from this channel. It wasn’t the “profit” part that bothered me, as I’m a believer in the free market. But this was not free market, and the companies were actually profiteering on the backs of my patients and justifying it by claiming they were saving the health care system billions of dollars. The fallacy of that claim and the players in this broken system are stories for another day.
Persistence came next for me. If you let up on the message, things might not only stay the same but could get worse. Perseverance is part of persistence because you need it to keep knocking on the same door even after that door is metaphorically (hopefully not literally) slammed in your face. Often, I will feel like a broken record and think that everyone has already heard the issues, not only from me but also from my fellow advocates. But never underestimate how many times a message, particularly on a difficult issue to understand, needs to be heard before it is fully comprehended.
Patience is one of the more difficult attributes to practice when you want action. I want things to happen yesterday – not tomorrow and definitely not next year. I have learned that the wheels of change turn quite slowly in this arena, sometimes pausing for inordinately long periods of time. I realize now that during the long wait, new facts can arise, allowing me to shape a different advocacy approach, one that ultimately bolsters my case. It still is very difficult to hear that a piece of legislation that seemed to be moving forward suddenly died and won’t be heard again until the next session. With patience you move forward with a smile, maybe a half-hearted one, but a smile nonetheless. This just makes life better.
Then there is compromise. This took me the longest to understand, particularly on the issues where my passion ran the deepest. Here is where passion could potentially get in the way of action. Feeling very strongly about an issue makes it difficult to let any piece of your ideal end result fall by the wayside. Here is where the saying “the perfect is the enemy of the good” comes into play. Just because you can’t have it all, doesn’t mean you can’t do good by achieving just part of what you have been striving for. Remember if you seek perfection, without compromise, you may lose the entire battle. Is there such a thing as compromising too much? I think so, but that may just be my passion speaking.
Rheumatology News and the Coalition of State Rheumatology Organizations started this column to keep you informed about current advocacy issues in rheumatology and perhaps inspire those who may be on the fence about finding “room” in their lives for action.
Advocacy doesn’t have to take up much room in your life. It can be as simple as clicking on CSRO.info/map, finding your state, and taking action by writing a letter to your representative on an important piece of legislation, like an accumulator adjustment ban (lots more on that in future columns). Or maybe just finding the time to read this column is all the action you have room for. We all have different amounts of space for any particular activity in our busy lives. It seems one of my stories from childhood created that space for advocacy in my life. I guess you could say it created a “Rheum” for Action.
Dr. Feldman is a rheumatologist in private practice with The Rheumatology Group in New Orleans. She is President of the CSRO, chair of the Alliance for Safe Biologic Medicines, and a past member of the American College of Rheumatology insurance subcommittee. You can reach her at rhnews@mdedge.com.
Rheumatology News and the Coalition of State Rheumatology Organizations have partnered together to keep rheumatologists regularly informed on the advocacy issues of the day and perhaps inspire those who may be on the fence about finding “room” in their lives for action. This inaugural piece tells how CSRO President Dr. Madelaine (Mattie) A. Feldman views advocacy and how she found her way to action.
As a rheumatologist in private practice for 30 years, with husband and kids (and now grandkids), an active social life, and an exercise regimen, I realized if I were to become active in advocacy I would have to make room for it in my busy schedule. We all come up against the question of where will we find the time for a new hobby, exercise, joining a new organization, or even just eating right? Next comes the priority list discussion. How important is advocacy for my patients, my specialty, and my profession? Ultimately, how important is it for me? Where did that desire to get involved even come from? Why have I become so passionate about the issues?
For me, the answer to these questions goes back to the 1960s when I was growing up in New Orleans. My mom participated in civil rights protests, which did not make our family popular in the neighborhood, back when the KKK put flyers on everyone’s screen door. My mother didn’t care and told me that, no matter what people said, it was our duty to stand up for what was right. That was a long time ago and sadly my mom passed away just a year after I was old enough to vote. Her words have stayed with me and are more important now than ever.
Striving for justice despite how formidable the foe is requires an inner knowing that what you are doing is meaningful and will make a difference maybe not now, maybe not next year. At some point you must believe that your efforts will create a change for the better, small as it may be. My “saying” on Twitter (@MattieRheumMD) is “I’ll keep doing what I’m doing until my cynicism catches up to my passion.”
The story about my mom is just one of the many stories in my life taking me to where I am today. We all have them. I think the reason many of us go into rheumatology may be similar to the reasoning that leads one to advocacy efforts. At this point in time we can’t yet offer a cure, but we can point to a path that leads to improvements in the lives of our patients. I have to remind myself of that, every time there is an advocacy battle ahead, whether with insurance companies or the government ... increments are important.
The four Ps of advocacy
Living with compromise is hard, particularly when working within a system that needs a complete overhaul. Still, compromise is the key to getting anything done. Compromise is one of the four Ps of advocacy. I realize that compromise doesn’t start with a P, but it is such an integral part of advocacy, I am making allowances for it. The other Ps include patience, persistence/perseverance, and passion. I’m sure there are many others that could be part of the P family, like planning and performance, but let’s stick with these.
You don’t need to have all of these qualities when you start on the road to action in advocacy. For example, my passion came first. It developed when my patients could not get access to the treatments they needed. For many reasons, the medications were either unavailable (i.e., not on formulary, tiered very high) or unaffordable (i.e., copay too high, deductible too high). My passion deepened when I saw the hypocrisy within the drug-supply channel and the mistruths being told by those who profit from this channel. It wasn’t the “profit” part that bothered me, as I’m a believer in the free market. But this was not free market, and the companies were actually profiteering on the backs of my patients and justifying it by claiming they were saving the health care system billions of dollars. The fallacy of that claim and the players in this broken system are stories for another day.
Persistence came next for me. If you let up on the message, things might not only stay the same but could get worse. Perseverance is part of persistence because you need it to keep knocking on the same door even after that door is metaphorically (hopefully not literally) slammed in your face. Often, I will feel like a broken record and think that everyone has already heard the issues, not only from me but also from my fellow advocates. But never underestimate how many times a message, particularly on a difficult issue to understand, needs to be heard before it is fully comprehended.
Patience is one of the more difficult attributes to practice when you want action. I want things to happen yesterday – not tomorrow and definitely not next year. I have learned that the wheels of change turn quite slowly in this arena, sometimes pausing for inordinately long periods of time. I realize now that during the long wait, new facts can arise, allowing me to shape a different advocacy approach, one that ultimately bolsters my case. It still is very difficult to hear that a piece of legislation that seemed to be moving forward suddenly died and won’t be heard again until the next session. With patience you move forward with a smile, maybe a half-hearted one, but a smile nonetheless. This just makes life better.
Then there is compromise. This took me the longest to understand, particularly on the issues where my passion ran the deepest. Here is where passion could potentially get in the way of action. Feeling very strongly about an issue makes it difficult to let any piece of your ideal end result fall by the wayside. Here is where the saying “the perfect is the enemy of the good” comes into play. Just because you can’t have it all, doesn’t mean you can’t do good by achieving just part of what you have been striving for. Remember if you seek perfection, without compromise, you may lose the entire battle. Is there such a thing as compromising too much? I think so, but that may just be my passion speaking.
Rheumatology News and the Coalition of State Rheumatology Organizations started this column to keep you informed about current advocacy issues in rheumatology and perhaps inspire those who may be on the fence about finding “room” in their lives for action.
Advocacy doesn’t have to take up much room in your life. It can be as simple as clicking on CSRO.info/map, finding your state, and taking action by writing a letter to your representative on an important piece of legislation, like an accumulator adjustment ban (lots more on that in future columns). Or maybe just finding the time to read this column is all the action you have room for. We all have different amounts of space for any particular activity in our busy lives. It seems one of my stories from childhood created that space for advocacy in my life. I guess you could say it created a “Rheum” for Action.
Dr. Feldman is a rheumatologist in private practice with The Rheumatology Group in New Orleans. She is President of the CSRO, chair of the Alliance for Safe Biologic Medicines, and a past member of the American College of Rheumatology insurance subcommittee. You can reach her at rhnews@mdedge.com.
An Anniversary Postponed and a Diagnosis Delayed: Vietnam and PTSD
Many events both personal and public have been deferred during the 15 plus months of the pandemic. Almost everyone has an example of a friend or family member who would have been sitting at what President Biden, during his memorial speech for the 500,000 victims of the virus referred to as the “empty chair” at a holiday gathering sans COVID-19.2 For many in our country, part of the agonizing effort to awaken from the long nightmare of the pandemic is to resume the rhythm of rituals national, local, and personal that mark the year with meaning and offer rest and rejuvenation from the daily toil of duty. There are family dinners now cautiously resumed due to vaccinations; small celebrations of belated birthdays in family pods; socially distanced outdoor gatherings suspended in the cold communicable winter now gingerly possible with the warmth of spring.
As a nation, one of the events that was put on hold was the commemoration of the Vietnam War. On March 16, 2021, following guidance from the Centers for Disease Control and Prevention, the US Department of Veterans Affairs (VA) announced it was postponing commemoration events “until further notice.”3 Annually, the VA partners with the US Department of Defense, state, and local organizations to recognize “the service and sacrifices made by the nearly 3 million service members who served in Vietnam.”4
In 2012, President Barak Obama signed a proclamation establishing a 13-year commemoration of the 50th anniversary of the Vietnam War.5 Five years later, President Donald Trump signed the War Veterans Recognition Act of 2017, designating March 29 annually as National Vietnam War Veterans Day.6 Though many of the events planned for March and April could not take place, the Vietnam War Commemoration (https://www.vietnamwar50th.com) offers information and ideas for honoring and supporting Vietnam War veterans. As Memorial Day approaches in this year of so much loss and heroism, I encourage you to find a way to thank Vietnam veterans who may have received the opposite of gratitude when they initially returned home.
As my small contribution to the commemoration, this editorial will focus on the psychiatric disorder of memory: posttraumatic stress disorder (PTSD) and how the Vietnam War brought definition—albeit delayed—to the agonizing diagnosis that too many veterans experience.
The known clinical entity of PTSD is ancient. Narrative descriptions of the disorder are written in the Mesopotamian Epic of Gilgamesh and in Deuteronomy 20:1-9.7 American and European military physicians have given various names to the destructive effects of combat on body and mind from “soldier’s heart” in the American Civil War, to “shell shock” in World War I to “battle fatigue” during World War II.8 These were all descriptive diagnoses field practitioners used to grasp the psychosomatic decompensation they observed in service members who had been exposed to the horrors of war. The VA was the impetus and agent of the earliest attempts at scientific definition. The American Psychiatric Association further developed this nosology in 1952 with the diagnosis of gross stress reaction in the first Diagnostic and Statistical Manual of Mental Disorders (DSM)-1.9
The combat experience shaped the definition: the stressor had to be extreme, the civilian comparison would be a natural disaster; the reaction could occur only in a previously normal individual, it would be attributed to the extant psychiatric condition in anyone with a premorbid illness; and if it did not remit by 6 months, another primary psychiatric diagnosis must be assigned.
From our vantage point, this set of criteria is obviously woefully inadequate, yet it was at least a beginning of formal recognition of the experience that veterans endured in wartime and real progress compared with what happened next. When DSM-1 was revised in 1968, the diagnosis of gross stress reaction was eliminated without explanation. Researcher Andreasen and others speculate that its disappearance can be attributed to association of the diagnosis with war in a country that had been at peace since the end of the Korean War in 1953.10 Yet military historians among my readers will immediately counter that the Vietnam War began 2 years later and that the year of the revision saw major combat operations.
Many veterans living with the psychological and physical suffering of their service in Vietnam and the organizations that supported them advocated for the psychiatric profession to formally acknowledge post-Vietnam syndrome.11 Five years after the end of the Vietnam War, the experts who authored DSM-III, decided to include a new stress-induced diagnosis.12 Although the manual did not limit the traumatic experience to combat in Vietnam as some veterans wanted, there is no doubt that the criteria reflect the extensive research validating the illness narratives of thousands of service men and women.
The DSM-III criteria clearly had war in mind when it stipulated that the stressor had to be outside the range of usual human experience that would likely trigger significant symptoms in almost anyone as well as specifying chronic symptoms lasting more than 6 months. Despite the controversy about the diagnosis, Vietnam veterans helped bring the PTSD diagnosis to official psychiatric nomenclature and in a more recognizable form that began to capture the intensity of their reexperiencing of the trauma, the psychosocial difficulties numbing caused, and the pervasive interference of hyperarousal and vigilance many aspects and areas of life.13
The National Vietnam Veterans Longitudinal Study examined the course of PTSD over 25 years, using the newly formulated diagnostic criteria for PTSD.14 Results were reported to Congress in 2012 and showed that 11% of men and 7% of women who were in a war theater were still struggling with PTSD 40 years after the war. Of those, 37% met major depressive disorder criteria. Male veterans who in 1987 still met criteria for PTSD were twice as likely to have died than the comparator group of veterans without PTSD. Two-thirds of veterans with PTSD from war zone exposure discussed behavioral health or substance misuse concerns with a health care provider, and 37% of those were receiving VA care.14
Given these disturbing data, perhaps the best way we can pay homage to the aging Vietnam veterans is to support continued research into effective evidence-based treatments for PTSD and funding for the training and recruiting of mental health practitioners to all 3 branches of federal health care who can deliver that care compassionately and competently.
1. The Vietnam War: a new film by Ken Burns and Lynn Novick, to air fall 2017 on PBS. Press release. Updated August 17, 2020. Accessed April 26, 2021. https://www.pbs.org/about/about-pbs/blogs/news/the-vietnam-war-a-new-film-by-ken-burns-and-lynn-novick-to-air-fall-2017-on-pbs
2. The White House Briefing Room. Remarks by President Biden on the more than 500,000 Americans lives lost to COVID-19. Published February 22, 2021. Accessed April 26, 2021.https://www.whitehouse.gov/briefing-room/speeches-remarks/2021/02/22/remarks-by-president-biden-on-the-more-than-500000-american-lives-lost-to-covid-19/
3. US Department of Veterans Affairs. Vantage Point. VA postpones 50th anniversary of the Vietnam War commemoration events. Published March 16, 2021. Accessed April 26, 2021. https://blogs.va.gov/VAntage/72694/va-postpones-50th-anniversary-vietnam-war-commemoration-events
4. US Department of Defense. Nation observes Vietnam War Veterans Day. Published March 29, 2021. Accessed April 26, 2021. https://www.defense.gov/Explore/Features/Story/Article/2545524/nation-observes-vietnam-war-veterans-day
5. The White House. Commemoration of the 50th anniversary of the Vietnam War. Published May 25, 2012. Accessed April 26, 2021. https://obamawhitehouse.archives.gov/the-press-office/2012/05/25/presidential-proclamation-commemoration-50th-anniversary-vietnam-war
6. Vietnam War Veterans Recognition Act. Public Law 115-15. U.S. Government Publishing Office, Washington DC, 2017.
7. Crocq M-A, Crocq L. From shell shock and war neurosis to posttraumatic stress disorder: a history of psychotraumatology. Dialogues Clin Neurosci .2000;2(1):47-55. doi:10.31887/DCNS.2000.2.1/macrocq
8. US Department of Veterans Affairs. History of PTSD in veterans: Civil War to DSM-5. Accessed April 26, 2021. https://www.ptsd.va.gov/understand/what/history_ptsd.asp
9. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders . Washington, DC: American Psychiatric Association; 1952.
10. Andreasen NC. Posttraumatic stress disorder: a history and a critique. Ann NY Acad Sci. 2010;1208;67-71. doi:10.1111/j.1749-6632.2010.05699.x
11. Shata CF. Post-Vietnam syndrome. The New York Times . Published May 6, 1972. Accessed April 26, 2021. https://www.nytimes.com/1972/05/06/archives/postvietnam-syndrome.html
12. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. (DSM-III) . Washington, DC. American Psychiatric Association; 1980.
13. Kinzie JD, Goetz RR. A century of controversy surrounding posttraumatic stress stress: spectrum syndromes: the impact on DSM-III and DSM-IV. J Trauma Stress. 1996;9(2):156-179. doi:10.1007/BF02110653
14. Schlenger WE, Corry NH. Four decades later: Vietnam veterans and PTSD. Published January/February 2015. Accessed April 25, 2021. http://vvaveteran.org/35-1/35-1_longitudinalstudy.html
Many events both personal and public have been deferred during the 15 plus months of the pandemic. Almost everyone has an example of a friend or family member who would have been sitting at what President Biden, during his memorial speech for the 500,000 victims of the virus referred to as the “empty chair” at a holiday gathering sans COVID-19.2 For many in our country, part of the agonizing effort to awaken from the long nightmare of the pandemic is to resume the rhythm of rituals national, local, and personal that mark the year with meaning and offer rest and rejuvenation from the daily toil of duty. There are family dinners now cautiously resumed due to vaccinations; small celebrations of belated birthdays in family pods; socially distanced outdoor gatherings suspended in the cold communicable winter now gingerly possible with the warmth of spring.
As a nation, one of the events that was put on hold was the commemoration of the Vietnam War. On March 16, 2021, following guidance from the Centers for Disease Control and Prevention, the US Department of Veterans Affairs (VA) announced it was postponing commemoration events “until further notice.”3 Annually, the VA partners with the US Department of Defense, state, and local organizations to recognize “the service and sacrifices made by the nearly 3 million service members who served in Vietnam.”4
In 2012, President Barak Obama signed a proclamation establishing a 13-year commemoration of the 50th anniversary of the Vietnam War.5 Five years later, President Donald Trump signed the War Veterans Recognition Act of 2017, designating March 29 annually as National Vietnam War Veterans Day.6 Though many of the events planned for March and April could not take place, the Vietnam War Commemoration (https://www.vietnamwar50th.com) offers information and ideas for honoring and supporting Vietnam War veterans. As Memorial Day approaches in this year of so much loss and heroism, I encourage you to find a way to thank Vietnam veterans who may have received the opposite of gratitude when they initially returned home.
As my small contribution to the commemoration, this editorial will focus on the psychiatric disorder of memory: posttraumatic stress disorder (PTSD) and how the Vietnam War brought definition—albeit delayed—to the agonizing diagnosis that too many veterans experience.
The known clinical entity of PTSD is ancient. Narrative descriptions of the disorder are written in the Mesopotamian Epic of Gilgamesh and in Deuteronomy 20:1-9.7 American and European military physicians have given various names to the destructive effects of combat on body and mind from “soldier’s heart” in the American Civil War, to “shell shock” in World War I to “battle fatigue” during World War II.8 These were all descriptive diagnoses field practitioners used to grasp the psychosomatic decompensation they observed in service members who had been exposed to the horrors of war. The VA was the impetus and agent of the earliest attempts at scientific definition. The American Psychiatric Association further developed this nosology in 1952 with the diagnosis of gross stress reaction in the first Diagnostic and Statistical Manual of Mental Disorders (DSM)-1.9
The combat experience shaped the definition: the stressor had to be extreme, the civilian comparison would be a natural disaster; the reaction could occur only in a previously normal individual, it would be attributed to the extant psychiatric condition in anyone with a premorbid illness; and if it did not remit by 6 months, another primary psychiatric diagnosis must be assigned.
From our vantage point, this set of criteria is obviously woefully inadequate, yet it was at least a beginning of formal recognition of the experience that veterans endured in wartime and real progress compared with what happened next. When DSM-1 was revised in 1968, the diagnosis of gross stress reaction was eliminated without explanation. Researcher Andreasen and others speculate that its disappearance can be attributed to association of the diagnosis with war in a country that had been at peace since the end of the Korean War in 1953.10 Yet military historians among my readers will immediately counter that the Vietnam War began 2 years later and that the year of the revision saw major combat operations.
Many veterans living with the psychological and physical suffering of their service in Vietnam and the organizations that supported them advocated for the psychiatric profession to formally acknowledge post-Vietnam syndrome.11 Five years after the end of the Vietnam War, the experts who authored DSM-III, decided to include a new stress-induced diagnosis.12 Although the manual did not limit the traumatic experience to combat in Vietnam as some veterans wanted, there is no doubt that the criteria reflect the extensive research validating the illness narratives of thousands of service men and women.
The DSM-III criteria clearly had war in mind when it stipulated that the stressor had to be outside the range of usual human experience that would likely trigger significant symptoms in almost anyone as well as specifying chronic symptoms lasting more than 6 months. Despite the controversy about the diagnosis, Vietnam veterans helped bring the PTSD diagnosis to official psychiatric nomenclature and in a more recognizable form that began to capture the intensity of their reexperiencing of the trauma, the psychosocial difficulties numbing caused, and the pervasive interference of hyperarousal and vigilance many aspects and areas of life.13
The National Vietnam Veterans Longitudinal Study examined the course of PTSD over 25 years, using the newly formulated diagnostic criteria for PTSD.14 Results were reported to Congress in 2012 and showed that 11% of men and 7% of women who were in a war theater were still struggling with PTSD 40 years after the war. Of those, 37% met major depressive disorder criteria. Male veterans who in 1987 still met criteria for PTSD were twice as likely to have died than the comparator group of veterans without PTSD. Two-thirds of veterans with PTSD from war zone exposure discussed behavioral health or substance misuse concerns with a health care provider, and 37% of those were receiving VA care.14
Given these disturbing data, perhaps the best way we can pay homage to the aging Vietnam veterans is to support continued research into effective evidence-based treatments for PTSD and funding for the training and recruiting of mental health practitioners to all 3 branches of federal health care who can deliver that care compassionately and competently.
Many events both personal and public have been deferred during the 15 plus months of the pandemic. Almost everyone has an example of a friend or family member who would have been sitting at what President Biden, during his memorial speech for the 500,000 victims of the virus referred to as the “empty chair” at a holiday gathering sans COVID-19.2 For many in our country, part of the agonizing effort to awaken from the long nightmare of the pandemic is to resume the rhythm of rituals national, local, and personal that mark the year with meaning and offer rest and rejuvenation from the daily toil of duty. There are family dinners now cautiously resumed due to vaccinations; small celebrations of belated birthdays in family pods; socially distanced outdoor gatherings suspended in the cold communicable winter now gingerly possible with the warmth of spring.
As a nation, one of the events that was put on hold was the commemoration of the Vietnam War. On March 16, 2021, following guidance from the Centers for Disease Control and Prevention, the US Department of Veterans Affairs (VA) announced it was postponing commemoration events “until further notice.”3 Annually, the VA partners with the US Department of Defense, state, and local organizations to recognize “the service and sacrifices made by the nearly 3 million service members who served in Vietnam.”4
In 2012, President Barak Obama signed a proclamation establishing a 13-year commemoration of the 50th anniversary of the Vietnam War.5 Five years later, President Donald Trump signed the War Veterans Recognition Act of 2017, designating March 29 annually as National Vietnam War Veterans Day.6 Though many of the events planned for March and April could not take place, the Vietnam War Commemoration (https://www.vietnamwar50th.com) offers information and ideas for honoring and supporting Vietnam War veterans. As Memorial Day approaches in this year of so much loss and heroism, I encourage you to find a way to thank Vietnam veterans who may have received the opposite of gratitude when they initially returned home.
As my small contribution to the commemoration, this editorial will focus on the psychiatric disorder of memory: posttraumatic stress disorder (PTSD) and how the Vietnam War brought definition—albeit delayed—to the agonizing diagnosis that too many veterans experience.
The known clinical entity of PTSD is ancient. Narrative descriptions of the disorder are written in the Mesopotamian Epic of Gilgamesh and in Deuteronomy 20:1-9.7 American and European military physicians have given various names to the destructive effects of combat on body and mind from “soldier’s heart” in the American Civil War, to “shell shock” in World War I to “battle fatigue” during World War II.8 These were all descriptive diagnoses field practitioners used to grasp the psychosomatic decompensation they observed in service members who had been exposed to the horrors of war. The VA was the impetus and agent of the earliest attempts at scientific definition. The American Psychiatric Association further developed this nosology in 1952 with the diagnosis of gross stress reaction in the first Diagnostic and Statistical Manual of Mental Disorders (DSM)-1.9
The combat experience shaped the definition: the stressor had to be extreme, the civilian comparison would be a natural disaster; the reaction could occur only in a previously normal individual, it would be attributed to the extant psychiatric condition in anyone with a premorbid illness; and if it did not remit by 6 months, another primary psychiatric diagnosis must be assigned.
From our vantage point, this set of criteria is obviously woefully inadequate, yet it was at least a beginning of formal recognition of the experience that veterans endured in wartime and real progress compared with what happened next. When DSM-1 was revised in 1968, the diagnosis of gross stress reaction was eliminated without explanation. Researcher Andreasen and others speculate that its disappearance can be attributed to association of the diagnosis with war in a country that had been at peace since the end of the Korean War in 1953.10 Yet military historians among my readers will immediately counter that the Vietnam War began 2 years later and that the year of the revision saw major combat operations.
Many veterans living with the psychological and physical suffering of their service in Vietnam and the organizations that supported them advocated for the psychiatric profession to formally acknowledge post-Vietnam syndrome.11 Five years after the end of the Vietnam War, the experts who authored DSM-III, decided to include a new stress-induced diagnosis.12 Although the manual did not limit the traumatic experience to combat in Vietnam as some veterans wanted, there is no doubt that the criteria reflect the extensive research validating the illness narratives of thousands of service men and women.
The DSM-III criteria clearly had war in mind when it stipulated that the stressor had to be outside the range of usual human experience that would likely trigger significant symptoms in almost anyone as well as specifying chronic symptoms lasting more than 6 months. Despite the controversy about the diagnosis, Vietnam veterans helped bring the PTSD diagnosis to official psychiatric nomenclature and in a more recognizable form that began to capture the intensity of their reexperiencing of the trauma, the psychosocial difficulties numbing caused, and the pervasive interference of hyperarousal and vigilance many aspects and areas of life.13
The National Vietnam Veterans Longitudinal Study examined the course of PTSD over 25 years, using the newly formulated diagnostic criteria for PTSD.14 Results were reported to Congress in 2012 and showed that 11% of men and 7% of women who were in a war theater were still struggling with PTSD 40 years after the war. Of those, 37% met major depressive disorder criteria. Male veterans who in 1987 still met criteria for PTSD were twice as likely to have died than the comparator group of veterans without PTSD. Two-thirds of veterans with PTSD from war zone exposure discussed behavioral health or substance misuse concerns with a health care provider, and 37% of those were receiving VA care.14
Given these disturbing data, perhaps the best way we can pay homage to the aging Vietnam veterans is to support continued research into effective evidence-based treatments for PTSD and funding for the training and recruiting of mental health practitioners to all 3 branches of federal health care who can deliver that care compassionately and competently.
1. The Vietnam War: a new film by Ken Burns and Lynn Novick, to air fall 2017 on PBS. Press release. Updated August 17, 2020. Accessed April 26, 2021. https://www.pbs.org/about/about-pbs/blogs/news/the-vietnam-war-a-new-film-by-ken-burns-and-lynn-novick-to-air-fall-2017-on-pbs
2. The White House Briefing Room. Remarks by President Biden on the more than 500,000 Americans lives lost to COVID-19. Published February 22, 2021. Accessed April 26, 2021.https://www.whitehouse.gov/briefing-room/speeches-remarks/2021/02/22/remarks-by-president-biden-on-the-more-than-500000-american-lives-lost-to-covid-19/
3. US Department of Veterans Affairs. Vantage Point. VA postpones 50th anniversary of the Vietnam War commemoration events. Published March 16, 2021. Accessed April 26, 2021. https://blogs.va.gov/VAntage/72694/va-postpones-50th-anniversary-vietnam-war-commemoration-events
4. US Department of Defense. Nation observes Vietnam War Veterans Day. Published March 29, 2021. Accessed April 26, 2021. https://www.defense.gov/Explore/Features/Story/Article/2545524/nation-observes-vietnam-war-veterans-day
5. The White House. Commemoration of the 50th anniversary of the Vietnam War. Published May 25, 2012. Accessed April 26, 2021. https://obamawhitehouse.archives.gov/the-press-office/2012/05/25/presidential-proclamation-commemoration-50th-anniversary-vietnam-war
6. Vietnam War Veterans Recognition Act. Public Law 115-15. U.S. Government Publishing Office, Washington DC, 2017.
7. Crocq M-A, Crocq L. From shell shock and war neurosis to posttraumatic stress disorder: a history of psychotraumatology. Dialogues Clin Neurosci .2000;2(1):47-55. doi:10.31887/DCNS.2000.2.1/macrocq
8. US Department of Veterans Affairs. History of PTSD in veterans: Civil War to DSM-5. Accessed April 26, 2021. https://www.ptsd.va.gov/understand/what/history_ptsd.asp
9. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders . Washington, DC: American Psychiatric Association; 1952.
10. Andreasen NC. Posttraumatic stress disorder: a history and a critique. Ann NY Acad Sci. 2010;1208;67-71. doi:10.1111/j.1749-6632.2010.05699.x
11. Shata CF. Post-Vietnam syndrome. The New York Times . Published May 6, 1972. Accessed April 26, 2021. https://www.nytimes.com/1972/05/06/archives/postvietnam-syndrome.html
12. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. (DSM-III) . Washington, DC. American Psychiatric Association; 1980.
13. Kinzie JD, Goetz RR. A century of controversy surrounding posttraumatic stress stress: spectrum syndromes: the impact on DSM-III and DSM-IV. J Trauma Stress. 1996;9(2):156-179. doi:10.1007/BF02110653
14. Schlenger WE, Corry NH. Four decades later: Vietnam veterans and PTSD. Published January/February 2015. Accessed April 25, 2021. http://vvaveteran.org/35-1/35-1_longitudinalstudy.html
1. The Vietnam War: a new film by Ken Burns and Lynn Novick, to air fall 2017 on PBS. Press release. Updated August 17, 2020. Accessed April 26, 2021. https://www.pbs.org/about/about-pbs/blogs/news/the-vietnam-war-a-new-film-by-ken-burns-and-lynn-novick-to-air-fall-2017-on-pbs
2. The White House Briefing Room. Remarks by President Biden on the more than 500,000 Americans lives lost to COVID-19. Published February 22, 2021. Accessed April 26, 2021.https://www.whitehouse.gov/briefing-room/speeches-remarks/2021/02/22/remarks-by-president-biden-on-the-more-than-500000-american-lives-lost-to-covid-19/
3. US Department of Veterans Affairs. Vantage Point. VA postpones 50th anniversary of the Vietnam War commemoration events. Published March 16, 2021. Accessed April 26, 2021. https://blogs.va.gov/VAntage/72694/va-postpones-50th-anniversary-vietnam-war-commemoration-events
4. US Department of Defense. Nation observes Vietnam War Veterans Day. Published March 29, 2021. Accessed April 26, 2021. https://www.defense.gov/Explore/Features/Story/Article/2545524/nation-observes-vietnam-war-veterans-day
5. The White House. Commemoration of the 50th anniversary of the Vietnam War. Published May 25, 2012. Accessed April 26, 2021. https://obamawhitehouse.archives.gov/the-press-office/2012/05/25/presidential-proclamation-commemoration-50th-anniversary-vietnam-war
6. Vietnam War Veterans Recognition Act. Public Law 115-15. U.S. Government Publishing Office, Washington DC, 2017.
7. Crocq M-A, Crocq L. From shell shock and war neurosis to posttraumatic stress disorder: a history of psychotraumatology. Dialogues Clin Neurosci .2000;2(1):47-55. doi:10.31887/DCNS.2000.2.1/macrocq
8. US Department of Veterans Affairs. History of PTSD in veterans: Civil War to DSM-5. Accessed April 26, 2021. https://www.ptsd.va.gov/understand/what/history_ptsd.asp
9. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders . Washington, DC: American Psychiatric Association; 1952.
10. Andreasen NC. Posttraumatic stress disorder: a history and a critique. Ann NY Acad Sci. 2010;1208;67-71. doi:10.1111/j.1749-6632.2010.05699.x
11. Shata CF. Post-Vietnam syndrome. The New York Times . Published May 6, 1972. Accessed April 26, 2021. https://www.nytimes.com/1972/05/06/archives/postvietnam-syndrome.html
12. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. (DSM-III) . Washington, DC. American Psychiatric Association; 1980.
13. Kinzie JD, Goetz RR. A century of controversy surrounding posttraumatic stress stress: spectrum syndromes: the impact on DSM-III and DSM-IV. J Trauma Stress. 1996;9(2):156-179. doi:10.1007/BF02110653
14. Schlenger WE, Corry NH. Four decades later: Vietnam veterans and PTSD. Published January/February 2015. Accessed April 25, 2021. http://vvaveteran.org/35-1/35-1_longitudinalstudy.html