A Physician Travels to South Asia Seeking Enduring Lessons From the Eradication of Smallpox
Smallpox was certified eradicated in 1980, but I first learned about the disease’s twisty, storied history in 1996 while interning at the World Health Organization. As a college student in the 1990s, I was fascinated by the sheer magnitude of what it took to wipe a human disease from the earth for the first time.
Over the years, I’ve turned to that history over and over, looking for inspiration and direction on how to be more ambitious when confronting public health threats of my day.
In the late 1990s, I had the opportunity to meet some of the health care professionals and other eradication campaign workers who helped stop the disease. I came to see that the history of this remarkable achievement had been told through the eyes mostly of white men from the United States, what was then the Soviet Union, and other parts of Europe.
But I knew that there was more to tell, and I worried that the stories of legions of local public health workers in South Asia could be lost forever. With its dense urban slums, sparse rural villages, complicated geopolitics, corrupt governance in some corners, and punishing terrain, South Asia had been the hardest battlefield the smallpox eradicators had to conquer.
I decided to capture some of that history. That work became a podcast, an eight-episode, limited-series audio documentary, called “Epidemic: Eradicating Smallpox.”
My field reporting began in summer 2022, when I traveled to India and Bangladesh — which had been the site of a grueling battle in the war on the disease. I tracked down aging smallpox workers, some now in their 80s and 90s, who had done the painstaking work of hunting down every last case of smallpox in the region and vaccinating everyone who had been exposed. Many of the smallpox campaign veterans had fallen out of touch with one another. Their friendships had been forged at a time when long-distance calls were expensive and telegrams were still used for urgent messages.
How did they defeat smallpox? And what lessons does that victory hold for us today?
I also documented the stories of people who contracted smallpox and lived. What can we learn from them? The survivors I met are not unlike my father, who grew up in a rural village in southern India where his childhood was shaped by family finances that limited access to opportunity. The stories he shared with me about the big social and economic divides in India fueled my decision to choose a career in public health and to work for equity. As we emerge from the covid pandemic, that connection is a big part of why I wanted to go back in time in search of answers to the challenges we face today.
Unwarranted Optimism
I sought out Indian and Bangladeshi public health workers, as well as the WHO epidemiologists — largely from the U.S. and Europe — who had designed and orchestrated the eradication campaigns across South Asia. Those smallpox leaders of the 1960s and ’70s showed moral imagination: While many doctors and scientists thought it would be impossible to stop a disease that had lasted for millennia, the eradication champions had a wider vision for the world — not just less smallpox or fewer deaths but elimination of the disease completely. They did not limit themselves to obvious or incremental improvements.
Bill Foege, a campaign leader in the 1970s, said by contrast today’s policymakers can be very reluctant to support programs that don’t already have data to back them up. They typically want proof of sustainability before investing in novel programs, he said, but real-world sustainability often only becomes clear when new ideas are put into practice and at scale.
The smallpox eradication visionaries were different from these cautious current leaders. “They had ‘unwarranted optimism,’” Foege said. They had faith that they could make “something happen that could not have been foreseen.”
In India, in particular, many leaders hoped their nation could compete with other superpowers on the world stage. That idealism, in part, stoked their belief that smallpox could be stopped.
During the smallpox program in South Asia, Mahendra Dutta was one the biggest risk-takers — willing to look beyond the pragmatic and politically palatable. He was a physician and public health leader who used his political savvy to help usher in a transformative smallpox vaccination strategy across India.
The eradication campaign had been grinding in India for over a decade. India had invested time and resources — and no small amount of publicity — into a mass vaccination approach. But the virus was still spreading out of control. At a time when India’s leaders were eager to project strength as a superpower and protective of the nation’s image on the world stage, Dutta’s was one of the voices that proclaimed to India’s policymakers that mass vaccination wasn’t working.
Dutta told them it was past time for India to adopt a new, more targeted vaccine strategy called “search and containment.” Teams of eradication workers visited communities across India to track down active cases of smallpox. Whenever they found a case, health workers would isolate the infected person, then vaccinate anyone that individual might have come in contact with.
To smooth the way for the new strategy, Dutta called in favors and even threatened to resign from his job.
He died in 2020, but I spoke with his son Yogesh Parashar, who said Dutta straddled two worlds: the in-the-trenches realities of smallpox eradication — and India’s bureaucracy. “My father did all the dirty work. He got enemies also in the process, I’m sure he did, but that is what he did,” Parashar said.
A Failure to Meet Basic Needs
Smallpox workers understood the need to build trust through partnerships: The WHO’s global smallpox eradication program paired its epidemiologists with Indian and Bangladeshi community health workers, who included laypeople with training and eager and idealistic medical students. Those local smallpox eradication workers were trusted messengers of the public health program. They leveraged the region’s myriad cultures and traditions to pave the way for people to accept the smallpox campaign and overcome vaccine hesitation. While encouraging vaccine acceptance, they embraced cultural practices: using folk songs to spread public health messages, for example, and honoring the way locals used the leaves of the neem tree to alert others to stay away from the home of someone infected with smallpox.
Smallpox eradication in South Asia unfolded against a backdrop of natural disaster, civil war, sectarian violence, and famine — crises that created many pressing needs. By many, many measures, the program was a success. Indeed, smallpox was stopped. Still, in the all-consuming push to end the virus, public health writ large often failed to meet people’s basic needs, such as housing or food.
The smallpox workers I interviewed said they were sometimes confronted by locals who made it clear they had concerns that, even in the midst of a raging epidemic, felt more immediate and important than smallpox.
Eradication worker Shahidul Haq Khan, whom podcast listeners meet in Episode 4, heard that sentiment as he traveled from community to community in southern Bangladesh. People asked him: “There’s no rice in people’s stomachs, so what is a vaccine going to do?” he said.
But the eradication mission largely did not include meeting immediate needs, so often the health workers’ hands were tied.
When a community’s immediate concerns aren’t addressed by public health, it can feel like disregard — and it’s a mistake, one that hurts public health’s reputation and future effectiveness. When public health representatives return to a community years or decades later, the memory of disregard can make it much harder to enlist the cooperation needed to respond to the next public health crises.
Rahima Banu Left Behind
The eradication of smallpox was one of humankind’s greatest triumphs, but many people — even the grandest example of that victory — did not share in the win. That realization hit me hard when I met Rahima Banu. As a toddler, she was the last person in the world known to have contracted a naturally occurring case of variola major smallpox. As a little girl, she and her family had — for a time — unprecedented access to care and attention from public health workers hustling to contain smallpox.
But that attention did not stabilize the family long-term or lift them from poverty.
Banu became a symbol of the eradication effort, but she did not share in the prestige or rewards that came after. Nearly 50 years later, Banu, her husband, their three daughters, and a son share a one-room bamboo-and-corrugated-metal home with a mud floor. Their finances are precarious. The family cannot afford good health care or to send their daughter to college. In recent years when Banu has had health problems or troubles with her eyesight, there have been no public health workers bustling around, ready to help.
“I cannot thread a needle because I cannot see clearly. I cannot examine the lice on my son’s head. I cannot read the Quran well because of my vision,” Banu said in Bengali, speaking through a translator. “No one wants to know how I am living my life with my husband and children, whether I am in a good condition or not, whether I am settled in my life or not.”
Missed Opportunities
I believe some of our public health efforts today are repeating mistakes of the smallpox eradication campaign, failing to meet people’s basic needs and missing opportunities to use the current crisis or epidemic to make sustained improvements in overall health.
The 2022 fight against mpox is one example. The highly contagious virus spiked around the world and spread quickly, predominantly among men who have sex with men. In New York City, for example, in part because some Black and Hispanic people had a historical mistrust for city officials, those groups ended up with lower rates of Mpox vaccination. And that failure to vaccinate became a missed opportunity to provide education and other health care treatments, including access to HIV testing and prevention.
And so has it gone with the covid pandemic, too. Health care providers, the clergy, and leaders from communities of color were enlisted to promote immunization. These trusted messengers were successful in narrowing race-related disparities in vaccination coverage, not only protecting their own but also shielding hospitals from crushing patient loads. Many weren’t paid to do this work. They stepped up despite having good reason to mistrust the health care system. In some ways, government officials upheld their end of the social contract, providing social and economic support to help these communities weather the pandemic.
But now we’re back to business as usual, with financial, housing, food, health care, and caregiving insecurity all on the rise in the U.S. What trust was built with these communities is again eroding. Insecurity, a form of worry over unmet basic needs, robs us of our ability to imagine big and better. Our insecurity about immediate needs like health care and caregiving is corroding trust in government, other institutions, and one another, leaving us less prepared for the next public health crisis.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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1 year 2 months ago
Public Health, Epidemic, vaccines
Movimientos en contra de las vacunas perjudican a los niños más vulnerables
Gayle Borne ha cuidado a más de 300 niños en Springfield, Tennessee. Niños que rara vez han visto a un médico y que han sido tan descuidados que ni siquiera pueden hablar.
Una ley que este estado aprobó en 2023 —que requiere el consentimiento de los padres biológicos o tutores legales para que los niños reciban vacunas de rutina— vuelve a estos niños aún más vulnerables.
Gayle Borne ha cuidado a más de 300 niños en Springfield, Tennessee. Niños que rara vez han visto a un médico y que han sido tan descuidados que ni siquiera pueden hablar.
Una ley que este estado aprobó en 2023 —que requiere el consentimiento de los padres biológicos o tutores legales para que los niños reciban vacunas de rutina— vuelve a estos niños aún más vulnerables.
Los padres temporales, trabajadores sociales y otros cuidadores no pueden otorgar ese permiso.
En enero, Borne llevó a una bebé que estaba cuidando, que nació con poco apenas 2 libras, a su primera cita médica. Los proveedores de salud dijeron que sin el consentimiento de la madre de la niña, no podían vacunarla contra enfermedades como la neumonía, la hepatitis B y la polio.
La madre no ha sido localizada, por lo que un trabajador social tuvo que solicitar una orden judicial para poder vacunarla. “Estamos esperando”, dijo Borne. “Nuestras manos están atadas”.
La ley de Tennessee también impide que las abuelas y otros cuidadores que acompañan a los niños a citas de rutina cuando los padres están trabajando, en rehabilitación, o simplemente no pueden ir, otorguen ese permiso.
La ley pretende “devolverles a los padres el derecho a tomar decisiones médicas para sus hijos”.
Enmarcada en la retórica de la elección y el consentimiento, esta ley es una de más de una docena de propuestas recientes y pendientes en todo el país que usan la libertad para decidir de los padres en contra de la salud comunitaria y de los niños.
En realidad, crean obstáculos para la vacunación, el fundamento de la atención pediátrica. Siembran dudas sobre la seguridad de las vacunas en un clima lleno de desinformación médica.
Esta tendencia ha explotado a medida que políticos e influencers en las redes sociales hacen afirmaciones falsas sobre los riesgos de las vacunas, a pesar de los estudios que muestran lo contrario.
Los médicos tradicionalmente brindan información sobre vacunas a los cuidadores y obtienen su permiso antes de administrar más de una docena de inmunizaciones infantiles que protegen contra el sarampión, la polio y otras enfermedades debilitantes.
Pero ahora, la ley de Tennessee exige que los padres biológicos asistan a citas de rutina y firmen formularios de consentimiento para cada vacuna administrada durante dos años o más.
“Los formularios podrían tener un efecto disuasorio”, opinó el doctor Jason Yaun, pediatra de Memphis y ex presidente del capítulo de Tennessee de la Academia Americana de Pediatría. “Las personas que promueven los derechos parentales sobre las vacunas tienden a minimizar los derechos de los niños”, dijo Dorit Reiss, investigadora de políticas de vacunas en la Facultad de Derecho de la Universidad de California en San Francisco.
Baja en la tasa de vacunación de rutina
La desinformación, junto con un movimiento por el derecho de los padres que aleja la toma de decisiones de la salud pública, ha contribuido a las tasas de vacunación infantil más bajas en una década.
Este año, legisladores en Arizona, Iowa y West Virginia han presentado proyectos de ley relacionados con el consentimiento.
Una enmienda del Parent’s Bill of Rights en Oklahoma busca asegurar que los padres sepan que pueden eximir a sus hijos de los mandatos de vacunación escolar junto con las lecciones sobre educación sexual y el SIDA.
En Florida, el escéptico médico que lidera el Departamento de Salud del estado recientemente desafió las recomendaciones de los Centros para el Control y la Prevención de Enfermedades (CDC) diciéndoles a los padres que podían enviar a los niños no vacunados a la escuela durante un brote de sarampión.
El año pasado, Mississippi comenzó a permitir exenciones de los requisitos de vacunación escolar por motivos religiosos debido a una demanda financiada por la Informed Consent Action Network (ICAN), que está catalogada como una de las principales fuentes de desinformación antivacunas por el Center for Countering Digital Hate.
Aunque algunos proyectos de ley fracasen, Reiss teme que el resurgimiento del movimiento por los derechos de los padres pueda llevar a abolir leyes que requieren vacunas de rutina para asistir a la escuela.
En un reciente mitín de campaña, el candidato presidencial republicano Donald Trump dijo: “No daré ni un centavo a ninguna escuela que tenga un mandato de vacunación”.
Este movimiento se remonta a la pandemia de influenza de 1918, cuando algunos padres se opusieron a reformas progresistas que volvieron obligatorio asistir a la escuela y prohibieron el trabajo infantil. Desde entonces, las tensiones entre las medidas estatales y la libertad de los padres han estallado ocasionalmente sobre una variedad de temas.
Las vacunas se convirtieron en un tema prominente en 2021, cuando el movimiento encontró puntos en común con personas escépticas sobre las vacunas contra covid.
“El movimiento de derechos parentales no comenzó con las vacunas”, dijo Reiss, “pero el movimiento antivacunas se ha aprovechado, ampliando su alcance”.
Cuando legisladores callan a expertos
En Tennessee, los activistas antivacunas y las organizaciones de tendencia libertaria arremetieron contra el Departamento de Salud del estado en 2021 cuando recomendó vacunas contra covid a menores, siguiendo la orientación de los CDC.
Gary Humble, director ejecutivo del grupo conservador Tennessee Stands, pidió a los legisladores que criticaran al departamento por aconsejar el uso de máscaras y la vacunación.
También hubo repercusiones después que Michelle Fiscus, entonces directora de inmunización del estado, envió un aviso a los médicos. Les recordó que no necesitaban el permiso de los padres para vacunar a adolescentes de 14 años o más que dieran su consentimiento, según una regla estatal de décadas llamada Doctrina del Menor Maduro (Mature Minor Doctrine).
En las semanas siguientes, los legisladores estatales amenazaron con retirarle al departamento su financiamiento, y lo presionaron para que redujera la promoción de la vacuna contra covid, según reveló The Tennessean.
Fiscus fue despedida abruptamente. “Hoy me convertí en la vigésimo quinta de los 64 directores de programas de inmunización estatales y territoriales en dejar su puesto durante esta pandemia”, escribió en un comunicado. “Eso es casi el 40% de nosotros”.
La tasa de mortalidad por covid en Tennessee aumentó, convirtiéndose en una de las más altas del país a mediados de 2022.
Para cuando dos legisladores estatales presentaron un proyecto de ley para revertir la doctrina, el departamento de salud guardó silencio sobre la propuesta. A pesar de los obstáculos para los niños en hogares temporales que requerirían de una orden judicial para vacunas de rutina, el Departamento de Servicios Infantiles de Tennessee tampoco dijo nada.
El representante republicano John Ragan, quien presentó el proyecto en abril de 2023, dijo: “Los niños pertenecen a sus familias, no al estado”.
El representante demócrata Justin Pearson habló en contra del proyecto de ley. “No tiene en cuenta a las personas y niños que son descuidados”, le dijo a Ragan. “Estamos legislando desde un lugar de privilegio y no reconociendo a las personas que no tienen estos privilegios”, agregó.
El proyecto de Ragan obtuvo la mayoría y el gobernador republicano Bill Lee lo firmó en mayo, haciéndolo efectivo de inmediato.
Deborah Lowen, entonces subcomisionada de salud infantil en el Departamento de Servicios Infantiles, recibió decenas de llamadas de médicos que ahora enfrentan pena de cárcel y multas por vacunar a menores sin un consentimiento adecuado. “Me sentí, y me siento, muy descorazonada”, dijo.
Derecho a la salud
Yaun, el pediatra de Memphis, dijo que se sintió conmocionado cuando se negó a administrar una primera serie de vacunas a un bebé acompañado por un trabajador social. “Ese niño está entrando en una situación en donde está rodeado de otros niños y adultos”, dijo, “donde podría estar expuesto a algo y fracasamos en protegerlo”.
“Hemos tenido muchos abuelos enojados en nuestra sala de espera que traen a sus nietos a las citas porque los padres están trabajando o pasando por un mal momento”, dijo Hunter Butler, pediatra en Springfield, Tennessee. “Una vez llamé a una instalación de rehabilitación para encontrar a una madre y hablar con ella por teléfono para obtener su consentimiento verbal para vacunar a su bebé”, dijo. “Y no está claro si eso estuvo bien”.
Las tasas de vacunación infantil han disminuido por tres años consecutivos en Tennessee. A nivel nacional, las tendencias en baja de la vacunación contra el sarampión llevaron a los CDC a estimar que un cuarto de millón de niños de jardín de infantes están en riesgo de contraer la enfermedad altamente contagiosa.
Las comunidades con tasas bajas de vacunación son vulnerables a medida que el sarampión aumenta a nivel internacional. Los casos confirmados de sarampión en 2023 fueron casi el doble que en 2022, un año en el que la Organización Mundial de la Salud (OMS) estima que más de 136,000 personas murieron por la enfermedad en todo el mundo.
Cuando los viajeros infectados en el extranjero llegan a comunidades con bajas tasas de vacunación infantil, el virus altamente contagioso puede propagarse rápidamente entre personas no vacunadas, así como entre bebés demasiado pequeños para ser vacunados y personas con sistemas inmunes debilitados.
“Existe un aspecto de libertad en el otro lado de este argumento”, dijo Caitlin Gilmet, directora de comunicaciones del grupo de defensa de vacunas SAFE Communities Coalition and Action Fund. “Deberías tener el derecho de proteger a tu familia de enfermedades prevenibles”.
A finales de enero, Gilmet y otros defensores de la salud infantil se reunieron en una sala del Capitolio de Tennessee en Nashville y ofrecieron un desayuno gratuito. Distribuyeron folletos mientras los legisladores y sus asistentes llegaban a comer. Un folleto describía el costo de un brote de sarampión en 2018-19 en el estado de Washington que enfermó a 72 personas, la mayoría de las cuales no estaban vacunadas. El brote costó $76,000 en atención médica, $2,3 millones para la respuesta de salud pública y aproximadamente $1 millón en pérdidas económicas debido a la enfermedad, cuarentena y atención.
Barb Dentz, defensora del grupo de base Tennessee Families for Vaccines, repitió que la mayoría de los constituyentes del estado apoyan políticas sólidas a favor de las vacunas. De hecho, siete de cada 10 adultos estadounidenses sostuvieron que las escuelas públicas deberían exigir la vacunación contra el sarampión, las paperas y la rubéola, en una encuesta del Pew Research Center realizada el año pasado.
Pero las cifras han estado disminuyendo. “Proteger a los niños debería ser algo tan obvio”, le dijo Dentz al representante republicano Sam Whitson. Whitson estuvo de acuerdo y reflexionó sobre una explosión de desinformación antivacunas. “El Dr. Google y Facebook han sido un desafío tan grande”, dijo. “Combatir la ignorancia se ha convertido en un trabajo de tiempo completo”.
Whitson fue uno de los pocos republicanos que votaron en contra de la enmienda de vacunas de Tennessee del año pasado. “La cuestión de los derechos de los padres realmente se ha afianzado”, dijo, “y puede ser utilizada a nuestro favor y en nuestra contra”.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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1 year 3 months ago
Health Industry, Noticias En Español, Public Health, States, Arizona, Children's Health, Iowa, Misinformation, Mississippi, Tennessee, vaccines, West Virginia
The State of the Union Is … Busy
The Host
Julie Rovner
KFF Health News
Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.
President Joe Biden is working to lay out his health agenda for a second term, even as Congress races to finish its overdue spending bills for the fiscal year that began last October.
Meanwhile, Alabama lawmakers try to reopen the state’s fertility clinics over the protests of abortion opponents, and pharmacy giants CVS and Walgreens announce they are ready to begin federally regulated sales of the abortion pill mifepristone.
This week’s panelists are Julie Rovner of KFF Health News, Sarah Karlin-Smith of the Pink Sheet, Alice Miranda Ollstein of Politico, and Sandhya Raman of CQ Roll Call.
Panelists
Sarah Karlin-Smith
Pink Sheet
Alice Miranda Ollstein
Politico
Sandhya Raman
CQ Roll Call
Among the takeaways from this week’s episode:
- Lawmakers in Washington are completing work on the first batch of spending bills to avert a government shutdown. The package includes a bare-bones health bill, leaving out certain bipartisan proposals that have been in the works on drug prices and pandemic preparedness. Doctors do get some relief in the bill from Medicare cuts that took effect in January, but the pay cuts are not canceled.
- The White House is floating proposals on drug prices that include expanding Medicare negotiations to more drugs; applying negotiated prices earlier in the market life of drugs; and capping out-of-pocket maximum drug payments at $2,000 for all patients, not just seniors. At least some of the ideas have been proposed before and couldn’t clear even a Democratic-controlled Congress. But they also keep up pressure on the pharmaceutical industry as it challenges the government in court — and as Election Day nears.
- Many in public health are expressing frustration after the Centers for Disease Control and Prevention softened its covid-19 isolation guidance. The change points to the need for a national dialogue about societal support for best practices in public health — especially by expanding access to paid leave and child care.
- Meanwhile, CVS and Walgreens announced their pharmacies will distribute the abortion pill mifepristone, and enthusiasm is waning for the first over-the-counter birth control pill amid questions about how patients will pay its higher-than-anticipated list price of $20 per month.
- Alabama’s governor signed a law protecting access to in vitro fertilization, granting providers immunity from the state Supreme Court’s recent “embryonic personhood” decision. But with opposition from conservative groups, is the new law also bound for the Alabama Supreme Court?
Also this week, Rovner interviews White House domestic policy adviser Neera Tanden about Biden’s health agenda.
Plus, for “extra credit” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: NPR’s “How States Giving Rights to Fetuses Could Set Up a National Case on Abortion,” by Regan McCarthy.
Sarah Karlin-Smith: Stat’s “The War on Recovery,” by Lev Facher.
Alice Miranda Ollstein: KFF Health News’ “Why Even Public Health Experts Have Limited Insight Into Stopping Gun Violence in America,” by Christine Spolar.
Sandhya Raman: The Journal’s “‘My Son Is Not There Anymore’: How Young People With Psychosis Are Falling Through the Cracks,” by Órla Ryan.
Also mentioned on this week’s podcast:
- NBC News’ “CDC Updates Covid Isolation Guidelines for People Who Test Positive,” by Erika Edwards.
- New York Magazine’s “Did Trump Really Vow to Defund Schools With Vaccine Mandates?” by Margaret Hartmann.
click to open the transcript
Transcript: The State of the Union Is … Busy
KFF Health News’ ‘What the Health?’Episode Title: The State of the Union Is … BusyEpisode Number: 337Published: March 7, 2024
[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]
Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, March 7, at 9 a.m. As always, news happens fast and things might have changed by the time you hear this, so here we go. We are joined today via video conference by Alice Miranda Ollstein, of Politico.
Alice Miranda Ollstein: Hello.
Rovner: Sarah Karlin-Smith, of the Pink Sheet.
Sarah Karlin-Smith: Hi, everybody.
Rovner: And Sandhya Raman, of CQ Roll Call.
Raman: Good morning.
Rovner: Later in this episode we’ll have my interview with White House domestic policy adviser Neera Tanden about the Biden administration’s health accomplishment so far and their priorities for 2024. But first, this week’s news. It is a big week here in the nation’s capital. In addition to sitting through President Biden’s State of the Union address, lawmakers appear on the way to finishing at least some of the spending bills for the fiscal year that began last Oct. 1. Good thing, too, because the president will deliver to Congress a proposed budget for the next fiscal year that starts Oct. 1, 2024, next Monday. Sandhya, which spending bills are getting done this week, and which ones are left?
Sandhya Raman: We’re about half-and-half as of last night. The House is done with their six-bill deal that they released. Congress came to a bipartisan agreement on Sunday and released then, so the FDA is in that part, in the agriculture bill. We also have a number of health extenders that we can …
Rovner: Which we’ll get to in a second.
Raman: Now it’s on to the Senate and then to Biden’s desk, and then we still have the Labor HHS [Department of Labor and Department of Health and Human Services] bill with all of the health funding that we’re still waiting on sometime this month.
Rovner: Yeah, it’s fair to say that the half that they’re getting done now are the easy ones, right? It’s the big ones that are left.
Ollstein: Although, if they were so easy, why didn’t they get them done a long time ago? There have been a lot of fights over policy riders that have been holding things up, in addition to disagreements about spending levels, which are perennial of course. But I was very interested to see that in this first tranche of bills, Republicans dropped their insistence on a provision banning mail delivery of abortion pills through the FDA, which they had been fighting for for months and months and months, and that led to votes on that particular bill being canceled multiple times. It’s interesting that they did give up on that.
Rovner: Yes. I shouldn’t say these were the easy ones, I should say these were the easier ones. Not that there’s a reason that it’s March and they’re only just now getting them done, but they have until the 22nd to get the rest of them done. How is that looking?
Raman: We still have not seen text on those yet. If they’re able to get there, we would see that in the next week or so, before then. And it remains to be seen, that traditionally the health in Labor HHS is one of the trickiest ones to get across the finish line in a normal year, and this year has been especially difficult given, like Alice said, all of the different policy riders and different back-and-forth there. It remains to be seen how that’ll play out.
Rovner: They have a couple of weeks and we will see. All right, well as you mentioned, as part of this first spending minibus, as they like to call it, is a small package of health bills. We talked about some of these last week, but tell us what made the final cut into this current six-bill package.
Raman: It’s whittled down a lot from what I think a lot of lawmakers were hoping. It’s pretty bare-bones in terms of what we have now. It’s a lot of programs that have traditionally been added to funding bills in the past, extending the special diabetes program, community health center funding, the National Health Service Corps, some sexual risk-avoidance programs. All of these would be pegged to the end of 2024. It kind of left out a lot of the things that Congress has been working on, on health care.
Rovner: Even bipartisan things that Congress has been working for on health care.
Raman: Yeah. They didn’t come to agreement on some of the pandemic and emergency preparedness stuff. There were some provisions for the SUPPORT Act — the 2018 really big opioid law — but a lot of them were not there. The PBM [pharmacy benefit managers] reform, all of that, was not, not this round.
Rovner: But at least judging from the press releases I got, there is some relief for doctor fees in Medicare. They didn’t restore the entire 3.3% cut, I believe it is, but I think they restored all but three-quarters of a percent of the cut. It’s made doctors, I won’t say happy, but at least they got acknowledged in this package and we’ll see what happens with the rest of them. Well, by the time you hear this, the president’s State of the Union speech will have come and gone, but the White House is pitching hard some of the changes that the president will be proposing on drug prices. Sarah, how significant are these proposals? They seem to be bigger iterations of what we’re already doing.
Karlin-Smith: Right. Biden is proposing expanding the Medicare Drug [Price] Negotiation program that Congress passed through the Inflation Reduction Act. He wants to go from Medicare being able to negotiate eventually up to 20 drugs a year to up to 50. He seems to be suggesting letting drugs have a negotiated price earlier in their life, letting them have less time on the market before negotiation. Also, thinking about applying some of the provisions of the IRA right now that only apply to Medicare to people in commercial plans, so this $2,000 maximum out-of-pocket spending for patients. Then also there are penalties that drugmakers get if they raise prices above inflation that would also apply to commercial plans. He’s actually proposed a lot of this before in previous budgets and actually Democrats, if you go back in time, tried to actually get some of these things in the initial IRA and even with a Democratic-controlled capital, could not actually get Democratic agreement to go broader on some of the provisions.
Rovner: Thank you, Sen. [Joe] Manchin.
Karlin-Smith: That said, I think it is significant that Biden is still pressing on this, even if they would really need big Democratic majorities and more progressive Democratic majorities to get this passed, because it’s keeping the pressure on the pharmaceutical industry. There were times before the IRA was passed where people were saying, “Pharma just needs to take this hit, it’s not going to be as bad as they think it is. Then they’ll get a breather for a while.” They’re clearly not getting that. The public is still very concerned about drug pricing, and they’re both fighting the current IRA in court. Actually, today there’s a number of big oral arguments happening. At the same time, they’re trying to get this version of the IRA improved somehow through legislation. All at the same time Democrats are saying, “Actually, this is just the start, we’re going to keep going.” It’s a big challenge and maybe not the respite they thought they might’ve gotten after this initial IRA was passed.
Rovner: But as you point out, still a very big voting issue. All right, well I want to talk about covid, which we haven’t said in a while. Last Friday, the Centers for Disease Control and Prevention officially changed its guidance about what people should do if they get covid. There’s been a lot of chatter about this. Sarah, what exactly got changed and why are people so upset?
Karlin-Smith: The CDC’s old guidance, if you will, basically said if you had covid, you should isolate for five days. If you go back in time, you’ll remember we probably talked about how that was controversial on its own when that first happened, because we know a lot of people are infectious and still test positive for covid much longer than five days. Now they’re basically saying, if you have covid, you can return to the public once you’re fever-free for 24 hours and your symptoms are improving. I think the implication here is, that for a lot of people, this would be before five days. They do emphasize to some degree that you should take precautions, masking, think about ventilation, maybe avoid vulnerable people if you can.
But I think there’s some in the public health world that are really frustrated by this. They feel like it’s not science- and evidence-based. We know people are going to be infectious and contagious in many cases for longer than periods of time where the CDC is saying, “Sure, go out in public, go back to work.” On the flip side, CDC is arguing, people weren’t really following their old guidance. In part because we don’t have a society set up to structurally allow them to easily do this. Most people don’t have paid sick time. They maybe don’t have people to watch their children if they’re trying to isolate from them. I think the tension is that, we’ve learned a lot from covid and it’s highlighted a lot of the flaws already in our public health system, the things we don’t do well with other respiratory diseases like flu, like RSV. And CDC is saying, “Well, we’re going to bring covid in line with those,” instead of thinking about, “OK, how can we actually improve as a society managing respiratory viruses moving forward, come up with solutions that work.”
I think there probably are ways for CDC to acknowledge some of the realities. CDC does not have the power to give every American paid sick time. But if CDC doesn’t push to say the public needs this for public health, how are we ever going to get there? I think that’s really a lot of the frustration in a lot of the public health community in particular, that they’re just capitulating to a society that doesn’t care about public health instead of really trying to push the agenda forward.
Rovner: Or a society that’s actively opposed to public health, as it sometimes seems. I know speaking for my NF1, I was sick for most of January, and I used up all my covid tests proving that I didn’t have covid. I stayed home for a few days because I felt really crappy, and when I started to feel better, I wore a mask for two weeks because, hello, that seemed to be a practical thing to do, even though I think what I had was a cold. But if I get sick again, I don’t have any more covid tests and I’m not going to take one every day because now they cost $20 a pop. Which I suspect was behind a lot of this. It’s like, “OK, if you’re sick with a respiratory ailment, stay home until you start to feel better and then be careful.” That’s essentially what the advice is, right?
Ollstein: Yeah. Although one other criticism I heard was specifically basing the new guidance on being fever-free, a lot of people don’t get a fever, they have other symptoms or they don’t have symptoms at all, and that’s even more insidious for allowing spread. I heard that criticism as well, but I completely agree with Sarah, that this seems like allowing public behavior to shape the guidance rather than trying to shape the public behavior with the guidance.
Rovner: Although some of that is how public health works, they don’t want to recommend things that they know people aren’t going to do or that they know the vast majority of people aren’t going to do. This is the difficulty of public health, which we will talk about more. While meanwhile, speaking in Virginia earlier this week, former President Donald Trump vowed to pull all federal funding for schools with vaccine mandates. Now, from the context of what he was saying, it seemed pretty clear that he was talking only about covid vaccine mandates, but that’s not what he actually said. What would it mean to lift all school vaccine mandates? That sounds a little bit scary.
Raman: That would basically affect almost every public school district nationwide. But even if it’s just covid shots, I think that’s still a little bit of a shift. You see Trump not taking as much public credit anymore for the fact that the covid vaccines were developed under his administration, Operation Warp Speed, that started under the Trump administration. It’s a little bit of a shift compared to then.
Rovner: I’m old enough to remember two cycles ago, when there were Republicans who were anti-vaccine or at least anti-vaccine curious, and the rest of the Republican Party was like, “No, no, no, no, no.” That doesn’t seem to be the case anymore. Now it seems to be much more mainstream to be anti-vax in general. Cough, cough. We see the measles outbreak in Florida, so we will clearly watch that space, too.
All right, moving on to abortion. Later this month, the Supreme Court will hear oral argument in the case that could severely restrict distribution of the abortion pill mifepristone. But in the meantime, pharmacy giants, CVS and Walgreens have announced they will begin distributing the abortion pill at their pharmacies. Alice, why now and what does this mean?
Ollstein: It’s interesting that this came more than a year after the big pharmacies were given permission to do this. They say it took this long because they had to get all of these systems up in place to make sure that only certified pharmacists were filling prescriptions from certified prescribing doctors. All of this is required because when the Biden administration, when the FDA, moved to allow this form of distribution of the abortion pill, they still left some restrictions known as REMS [risk evaluation and mitigation strategies] in place. That made it take a little more time, more bureaucracy, more box checking, to get to this point. It is interesting that given the uncertainty with the Supreme Court, they are moving forward with this. It’s this interesting state-versus-federal issue, because we reported a year ago that Walgreens and CVS would not distribute the pills in states where Republican state attorneys general have threatened them with lawsuits.
So, they’ve noted the uncertainty at the state level, but even with this uncertainty at the federal level with the Supreme Court, which could come in and say this form of distribution is not allowed, they’re still moving forward. It is limited. It’s not going to be, even in blue states where abortion is protected by law, they’re not going to be at every single CVS. They’re going to do a slower, phased rollout, see how it goes. I’m interested in seeing if any problems arise. I’m also interested in seeing, anti-abortion groups have vowed to protest these big pharmacy chains for making this medication available. They’ve disrupted corporate meetings, they’ve protested outside brick-and-mortar pharmacies, and so we’ll see if any of that continues and has an effect as well.
Rovner: It’s hard to see how the anti-abortion groups though could have enough people to protest every CVS and Walgreens selling the abortion pill. That will be an interesting numbers situation. Well, in a case of not-so-great timing, if only for the confusion potential, also this week we learned that the first approved over-the-counter birth control pill, called Opill, is finally being shipped. Now, this is not the abortion pill. It won’t require a prescription, that’s the whole point of it being over-the-counter. But I’ve seen a lot of advocacy groups that worked on this for years now complaining that the $20 per month that the pill is going to cost, it’s still going to be too much for many who need it. Since it’s over-the-counter, it’s not going to be covered by most insurance. This is a separate issue of its own that’s a little bit controversial.
Karlin-Smith: You can with over-the-counter drugs, if you have a flexible spending account or an HSA or something else, you may be able to use money that’s somehow connected to your health insurance benefit or you’re getting some tax breaks on it. However, I think this over-the-counter pill is probably envisioned most for people that somehow don’t have insurance, because we know the Affordable Care Act provides birth control methods with no out-of-pocket costs for people. So if you have insurance, most likely you would be getting a better deal getting a prescription and going that route for the same product or something similar.
The question becomes then, does this help the people who fall in those gaps who are probably likely to have less financial means to begin with? There’s been some polling and things that suggest this may be too high a price point for them. I know there are some discounts on the price. Essentially if you can buy three months upfront or even some larger quantities, although again that means you then have to have that larger sum of money upfront, so that’s a big tug of war. I think the companies argue this is pretty similar pricing to other over-the-counter drug products in terms of volume and stuff, so we’ll see what happens.
Rovner: I think they were hoping it was going to be more like $5 a month and not $20 a month. I think that came as a little bit of a disappointment to a lot of these groups that have been working on this for a very long time.
Ollstein: Just quickly, the jury is also still out on insurance coverage, including advocacy groups are also pressuring public insurance, Medicaid, to come out and say they’ll cover it as well. So we’ll keep an eye on that.
Rovner: Yeah, although Medicaid does cover prescription birth control. All right, well let us catch up on the IVF [in vitro fertilization] controversy in Alabama, where there was some breaking news over last night. When we left off last week, the Alabama Legislature was trying to come up with legislation that would grant immunity to fertility clinics or their staff for “damaging or killing fertilized embryos,” without overtly overruling the state Supreme Court decision from February that those embryos are, “extrauterine children.” Alice, how’s that all going?
Ollstein: Well, it was very interesting to see a bunch of anti-abortion groups come out against the bill that Alabama, mostly Republicans, put together and passed and the Republican governor signed it into law. The groups were asking her to veto it; they didn’t want that kind of immunity for discarding or destroying embryos. Now what we will see is if there’s going to be a lawsuit that lands this new law right back in front of the same state Supreme Court that just opened this whole Pandora’s box in the first place, that’s very possible. That’s one thing I’m watching. I guess we should also watch for other states to take up this issue. A lot of states have fetal personhood language, either in their constitutions or in statute or something, so really any of those states could become the next Alabama. All it would take is someone to bring a court challenge and try to get a similar ruling.
Rovner: I was amused though that the [Alabama] Statehouse passed the immunity law yesterday, Wednesday during the day. But the Senate passed it later in the evening and the governor signed it. I guess she didn’t want to let it hang there while these big national anti-abortion groups were asking her to veto it. So by the time I woke up this morning, it was already law.
Ollstein: It’s just been really interesting, because the anti-abortion groups say they support IVF, but they came out against the Democrats’ federal bill that would provide federal protections. They came out against nonbinding House resolutions that Republicans put forward saying they support IVF, and they came out against this Alabama fix. So it’s unclear what form of IVF, if any, they do support.
Rovner: Meanwhile, in Kentucky, the state Senate has overwhelmingly passed a bill that would permit a parent to seek child support retroactively to cover pregnancy expenses up until the child reaches age 1. So you have until the child turns 1 to sue for child support. Now, this isn’t technically a “personhood” bill, and it’s legit that there are expenses associated with becoming a parent even before a baby is born, but it’s skating right up to the edge of that whole personhood thing.
It brings me to my extra credit for this week, which I’m going to do early. It’s a story from NPR called, “How States Giving Rights to Fetuses Could Set Up a National Case on Abortion,” by Regan McCarthy of member station WFSU in Tallahassee. In light of Florida’s tabling of a vote on its personhood bill in the wake of the Alabama ruling last week, the story poses a question I hadn’t really thought about in the context of the personhood debate, whether some of these partway recognition laws, not just the one in Kentucky, but there was one in Georgia last year, giving tax deductions for children who are not yet born as long as you could determine a heartbeat in the second half of the year, because obviously in the first half of the year the child would’ve been born.
Whether those are part of a very long game that will give courts the ability to put them all together at some point and declare not just embryos but zygotes children. Is this in some ways the same playbook that anti-abortion forces use to get Roe [v. Wade] overturned? That was a very, very long game and at least this story speculates that that might be what they’re doing now with personhood.
Ollstein: Some anti-abortion groups are very open that it is what they want to do. They have been seeding the idea in amicus briefs and state policies. They’ve been trying to tuck personhood language into all of these things to eventually prompt such a ruling, ideally from the Supreme Court and, in their view. So whether that moves forward remains to be seen, but it’s certainly the next goal. One of many next goals on the horizon.
Rovner: Yes, one of many. All right, well moving on. Last week I called the cyberattack on Change Healthcare, a subsidiary of UnitedHealth Group, the biggest under-covered story in health care. Well, it is not under-covered anymore. Two weeks later, thousands of hospitals, pharmacies, and doctor practices still can’t get their claims paid. It seems that someone, though it’s not entirely clear who, paid the hackers $22 million in ransom. But last time I checked the systems were still not fully up. I saw a letter this morning from the Medicaid directors worrying about Medicaid programs getting claims fulfilled. How big a wake-up call has this been for the health industry, Sarah? This is a bigger deal than anybody expected.
Karlin-Smith: There’s certainly been cyberattacks on parts of the health system before in hospitals. I think the breadth of this, because it’s UnitedHealth [Group], is really significant. Particularly, because it seems like some health systems were concerned that the broader United network of companies and systems would get impacted, so they sort of disconnected from things that weren’t directly changed health care, and that ended up having broader ramifications. It’s one consequence of United being such a big monolith.
Then the potential that United paid a ransom here, which is not 100% clear what happened, is very worrisome. Again, because there’s this sense that, that will then increase the — first, you’re paying the people that then might go back and do this, so you’re giving them more money to hack. But also again, it sets up a precedent, that you can hack health systems and they will pay you. Because it is so dangerous, particularly when you start to get involved in attacking the actual systems that provide people care. So much, if you’ve been in a hospital lately or so forth, is run on computer systems and devices, so it is incredibly disruptive, but you don’t want to incentivize hackers to be attacking that.
Rovner: I certainly learned through this how big Change Healthcare, which I had never heard of before this hack and I suspect most people even who do health policy had never heard of before this attack, how embedded they are in so much of the health care system. These hackers knew enough to go after this particular system that affected so much in basically one hack. I’m imagining as this goes forward, for those who didn’t listen to last week’s podcast, we also talked about the Justice Department’s new investigation into the size of UnitedHealth [Group], an antitrust investigation for… It was obviously not prompted by this, it was prompted by something else, but I think a lot of people are thinking about, how big should we let one piece of the health care system get in light of all these cyberattacks?
All right, well we’ll obviously come back to this issue, too, as it resolves, one would hope. That is the news for this week. Now we will play my interview with White House domestic policy adviser Neera Tanden, and then we will come back with our extra credits.
I am so pleased to welcome to the podcast Neera Tanden, domestic policy adviser to President Biden, and director of the White House Domestic Policy Council. For those of you who don’t already know her, Neera has spent most of the last two decades making health policy here in Washington, having worked on health issues for Hillary Clinton, President Barack Obama, and now President Joe Biden. Neera, thank you so much for joining us.
Neera Tanden: It’s really great to be with you, Julie.
Rovner: As we tape this, the State of the Union is still a few hours away and I know there’s stuff you can’t talk about yet. But in general, health care has been a top-of-mind issue for the Biden administration, and I assume it will continue to be. First, remind us of some of the highlights of the president’s term so far on health care.
Tanden: It’s a top concern for the president. It’s a top issue for us, but that’s also because it’s really a top issue for voters. We know voters have had significant concerns about access, but also about costs. That is why this administration has really done more on costs than any administration. This is my third, as you noted, so I’m really proud of all the work we’ve done on prescription drugs, on lowering costs of health care in the exchanges, on really trying to think through the cost burden for families when it comes to health care.
When we talk about prescription drugs, it’s a wide-ranging agenda, there are things or policies that people have talked about for decades, like Medicare negotiating drug prices, that this president is the first president to truly deliver on, which he will talk about in the State of the Union. But we’ve also innovated in different policies through the Inflation Reduction Act, the inflation rebates, which ensure that drug companies don’t raise the price of drugs faster than inflation. When they do, they pay a rebate both to Medicare but also ultimately to consumers. Those our high-impact policies that will really take a comprehensive approach on lowering prices.
Rovner: Yet for all the president has accomplished, and people who listen to the podcast regularly will know that it has been way more than was expected given the general polarization around Washington right now. Why does the president seem to get so little credit for getting done more things than a lot of his predecessors were able to do in two terms?
Tanden: Well, I think people do recognize the importance of prescription drug coverage. And health care as an issue that the president — it’s not my place to talk about politics, but he does have significant advantages on issues like health care. That I think, is because we’ve demonstrated tangible results. People understand what $35 insulin means. What I really want to point to in the Medicare negotiation process is, Sept. 1, Medicare will likely have a list of drugs which are significantly lower costs, that process is underway. But my expectation, you know I’m not part of it, that’s being negotiated by CMS [Centers for Medicare & Medicaid Services] and HHS, but we expect to have a list of 10 drugs that are high-cost items for seniors in which they’ll see a price that is lower than what they pay now. That’s another way in which, like $35 insulin, we’ll have tangible proof points of what this administration will be delivering for families.
Rovner: There’s now a record number of people who have health insurance under the Affordable Care Act, which I remember you also worked on. But in surveys, as you noted, voters now say they’re less worried about coverage and more worried about not being able to pay their medical bills even if they have insurance. I know a lot of what you’re doing on the drug side is limited to Medicare. Now, do you expect you’re going to be able to expand that to everybody else?
Tanden: First and foremost, our drug prices will be public, as you know. And as you know, prices in Medicare have been able to influence other elements of the health care system. That is really an important part of this. Which is that again, those prices will be public and our hope is that the private sector adopts those prices, because they’re ones that are negotiated. We expect this to affect, not just seniors, but families throughout the country.
There are additional actions we’ll be taking on Medicare drug negotiation. That will be a significant portion of the president’s remarks on health care, not just what we’ve been able to do in Medicare drug negotiation, but how we can really build on that and really ensure that we are dramatically reducing drug costs throughout the system. I look forward to hearing the president on that topic.
Rovner: I know we’re also going to get the budget next week. Are there any other big health issues that will be a priority this year?
Tanden: The president will have a range of policies on issues like access to sickle cell therapies, ensuring affordable generic drugs are accessible to everybody, ensuring that we are building on the Affordable Care Act gains. You mentioned this, but I just really do want to step back and talk about access under the Affordable Care Act. Because I think if people started off at the beginning of this administration and said the ACA marketplaces close to double, people would’ve been shocked. You know this well, a lot of people thought the exchanges were maximizing their potential. There are a lot of people who may not be interested in that, but the president had, in working with Congress, made the exchanges more affordable.
We’ve seen record adoption: 21 million people covered through the ACA exchanges today, when it was 12 million when we started. That’s 9 million more people who have the security of affordable health care coverage. I think it’s a really important point, which is, why are people signing up? Because it is a lot more affordable? Most people can get a very affordable plan. People are saving on average $800, and that affordability is crucial. Of course we have to do more work to reduce costs throughout the health care system. But it’s an important reminder that when you lower drug costs, you also have the ability to lower premiums and it’s another way in which we can drive health care costs down. I would be genuinely honest with you, which is, I did not think we would be able to do all of these things at the beginning of the administration. The president has been laser-focused on delivering, and as you know from your work on the ACA, he did think it was a big deal.
Rovner: I have that on a T-shirt.
Tanden: A lot of people have talked about different things, but he has been really focused on strengthening the ACA. He’ll talk about how we need to strengthen it in the future, and how that is another choice that we face this year, whether we’re going to entertain repealing the ACA or build on it and ensure that the millions of people who are using the ACA have the security to know that it’s there for them into the future. Not just on access, but that also means protections for preexisting conditions, ensuring women can no longer be discriminated against, the lifetime annual limits. There’s just a variety of ways that ACA has transformed the health care system to be much more focused on consumers.
Rovner: Last question. Obviously reproductive health, big, big issue this year. IVF in particular has been in the news these past couple of weeks, thanks to the Alabama Supreme Court. Is there anything that President Biden can do using his own executive power to protect access to reproductive health technology? And will we hear him at some point address this whole personhood movement that we’re starting to see bubble back up?
Tanden: I think the president will be very forceful on reproductive rights and will discuss the whole set of freedoms that are at stake and reproductive rights and our core freedom at stake this year. You and I both know that attacks on IVF are actually just the effectuation of the attacks on Roe. What animates the attacks on Roe, would ultimately affect IVF. I felt like I was a voice in the wilderness for the last couple of decades, where people were saying … They’re just really focused on Roe v. Wade. It won’t have any impact on IVF or [indecipherable] they’re just scare tactics when you talk about IVF.
Obviously the ideological underpinnings of attacks on Roe ultimately mean that you would have to take on IVF, which is exactly what women are saying. I think the president will speak forcefully to the attacks on women’s dignity that women are seeing throughout this country, and how this ideological battle has translated to misery and pain for millions of women. Misery and pain for their families. And has really reached the point where women who are desperate to have a family are having their reproductive rights restricted because of the ideological views of a minority of the country. That is a huge issue for women, a huge issue for the country, and exactly why he’ll talk about moving forward on freedoms and not moving us back, sometimes decades, on freedom.
Rovner: Well, Neera Tanden, you have a lot to keep you busy. I hope we can call on you again.
Tanden: There’s few people who know the health care system as well as Julie Rovner, so it’s just a pleasure to be with you.
Rovner: OK, we are back. It’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. I already did mine. Sandhya, why don’t you go next?
Raman: My extra credit this week is called “My Son Is Not There Anymore: How Young People With Psychosis Are Falling Through the Cracks,” and it’s by Órla Ryan for The Journal. This was a really interesting story about schizophrenia in Ireland and just how the earlier someone’s symptoms are treated the better the outcome. But a lot of children and minors with psychosis and schizophrenia struggle to get access to the care they need and just fall through the cracks of being transferred from one system to another, especially if they’re also dealing with disabilities. If some of these symptoms are treated before puberty, the severity is likely to go down a lot and they’re much less likely to experience psychosis. She takes a really interesting look at a specific case and some of the consequences there.
Rovner: I feel like we don’t look enough at what other countries health systems are doing because we could all learn from each other. Alice, why don’t you go next?
Ollstein: I have a piece by KFF Health News called “Why Even Public Health Experts Have Limited Insight Into Stopping Gun Violence in America.” It’s looking at the toll taken by the long-standing restrictions on federal funding for research into gun violence, investigating it as a public health issue. Only recently this has started to erode at the federal level and some funding has been approved for this research, but it is so small compared to the death toll of gun violence. This article sort of argues that lacking that data for so many years is why a lot of the quote-unquote “solutions” that places have tried to implement to prevent gun violence, just don’t work. They haven’t worked, they haven’t stopped these mass shootings, which continue to happen. So, arguing that, if we had better data on why things happen and how to make it less lethal, and safe, in various spaces, that we could implement some things that actually work.
Rovner: Yeah, we didn’t have the research just as this problem was exploding and now we are paying the price. Sarah.
Karlin-Smith: I looked at the first in a Stat News series by Lev Facher, “The War on Recovery: How the U.S. Is Sabotaging Its Best Tools to Prevent Deaths in the Opioid Epidemic.” It looks at why the U.S. has had access to cheap effective medicines that help reduce the risk of overdose and death for people that are struggling with opioid-use disorder haven’t actually been able, in most cases, to get access to these drugs, methadone and buprenorphine.
The reasons range from even people not being allowed to take the drugs when they’re in prison, to not being able to hold certain jobs if you’re taking these prescription medications, to Narcotics Anonymous essentially banning people from coming to those meetings if they use these drugs, to doctors not being willing or open to prescribing them. Then of course, there’s what always seems to come up these days, the private equity angle. Which is that methadone clinics are becoming increasingly owned by private equity and they’ve actually pushed back on and lobbied against policies that would make it easier for people to get methadone treatment. Because one big barrier to methadone treatment is, right now you largely have to go every day to a clinic to get your medicine, which it can be difficult to incorporate into your life if you need to hold a job and take care of kids and so forth.
It’s just a really fascinating dive into why we have the tools to make what is really a terrible crisis that kills so many people much, much better in the U.S. but we’re just not using them. Speaking of how other countries handle it, the piece goes a little bit into how other countries have had more success in actually being open to and using these tools and the differences between them and the U.S.
Rovner: Yeah, it’s a really good story. All right, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks as always to our technical guru, Francis Ying, and our editor, Emmarie Huetteman. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me at X, @jrovner, or @julierovner at Bluesky or @julie.rovner at Threads. . Sarah, where are you these days?
Karlin-Smith: Trying mostly to be on Blue Sky, but on X, Twitter a little bit at either @SarahKarlin or @sarahkarlin-smith.
Rovner: Alice.
Ollstein: @alicemiranda on Blue Sky, and @AliceOllstein on X.
Rovner: Sandhya.
Raman: @SandhyaWrites on X and on Blue Sky.
Rovner: We will be back in your feed next week. Until then, be healthy.
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Cholera vaccine shortage reaches worst point yet, with experts fearing deadly outbreaks
An unprecedented shortage of cholera vaccine has public health experts fearing that a recent surge of outbreaks across developing countries will only worsen, a situation they argue is as regrettable as it was avoidable.
At least 16 countries in Asia, Africa, and the Caribbean are dealing with cholera outbreaks. According to the latest report from the European Centre for Disease Prevention and Control, between Dec. 23 and Jan. 23, nearly 50,500 people contracted cholera and nearly 500 died. Those numbers will almost certainly rise amid the worst vaccine shortage since an oral vaccine was introduced in the 1990s.
1 year 3 months ago
Health, global health, infectious disease, Public Health, vaccines
RFK Jr.’s Campaign of Conspiracy Theories Is PolitiFact’s 2023 Lie of the Year
As pundits and politicos spar over whether Robert F. Kennedy Jr.’s presidential campaign will factor into the outcome of the 2024 election, one thing is clear: Kennedy’s political following is built on a movement that seeks to legitimize conspiracy theories.
His claims decrying vaccines have roiled scientists and medical experts and stoked anger over whether his work harms children. He has made suggestions about the cause of covid-19 that he acknowledges sound racist and antisemitic.
Bolstered by his famous name and family’s legacy, his campaign of conspiracy theories has gained an electoral and financial foothold. He is running as an independent — having abandoned his pursuit of the Democratic Party nomination — and raised more than $15 million. A political action committee pledged to spend between $10 million and $15 million to get his name on the ballot in 10 states.
Even though he spent the past two decades as a prominent leader of the anti-vaccine movement, Kennedy rejects a blanket “anti-vax” label that he told Fox News in July makes him “look crazy, like a conspiracy theorist.”
But Kennedy draws bogus conclusions from scientific work. He employs “circumstantial evidence” as if it is proof. In TV, podcast, and political appearances for his campaign in 2023, Kennedy steadfastly maintained:
- Vaccines cause autism.
- No childhood vaccines “have ever been tested in a safety study pre-licensing.”
- There is “tremendous circumstantial evidence” that psychiatric drugs cause mass shootings, and the National Institutes of Health refuses to research the link out of deference to pharmaceutical companies.
- Ivermectin and hydroxychloroquine were discredited as covid-19 treatments so covid vaccines could be granted emergency use authorization, a win for Big Pharma.
- Exposure to the pesticide atrazine contributes to gender dysphoria in children.
- Covid-19 is “targeted to attack Caucasians and Black people. The people who are most immune are Ashkenazi Jews and Chinese.”
For Kennedy, the conspiracies aren’t limited to public health. He claims “members of the CIA” were involved in the assassination of his uncle, John F. Kennedy. He doesn’t “believe that (Sirhan) Sirhan’s bullets ever hit my father,” former Attorney General Robert F. Kennedy. He insists the 2004 presidential election was stolen from Democratic candidate John Kerry.
News organizations, including PolitiFact, have documented why those claims, and many others, are false, speculative, or conspiracy-minded.
Kennedy has sat for numerous interviews and dismissed the critics, not with the grievance and bluster of former President Donald Trump, but with a calm demeanor. He amplifies the alleged plot and repeats dubious scientific evidence and historical detail.
Will his approach translate to votes? In polls since November of a three-way matchup between President Joe Biden, Trump, and Kennedy, Kennedy pulled 16% to 22% of respondents.
Kennedy’s movement exemplifies the resonance of conspiratorial views. Misinformers with organized efforts are rewarded with money and loyalty. But that doesn’t make the claims true.
Robert F. Kennedy Jr.’s campaign based on false theories is PolitiFact’s 2023 Lie of the Year.
How an Environmental Fighter Took Up Vaccines
Kennedy, the third of 11 children, was 9 when he was picked up on Nov. 22, 1963, from Sidwell Friends School in Washington, D.C., because Lee Harvey Oswald had shot and killed Uncle Jack. He was 14 when he learned that his father had been shot by Sirhan Sirhan following a victory speech after the California Democratic presidential primary.
RFK Jr., who turns 70 in January, wouldn’t begin to publicly doubt the government’s findings about the assassinations until later in his adulthood.
As a teenager, he used drugs. He was expelled from two boarding schools and arrested at 16 for marijuana possession. None of that slowed an elite path through higher education, including Harvard University for his bachelor’s degree and the University of Virginia for his law degree.
He was hired as an assistant district attorney in Manhattan in 1982 but failed the bar exam and resigned the next year. Two months later, he was arrested for heroin possession after falling ill on a flight. His guilty plea involved a drug treatment program, a year of probation, and volunteer work with a local anglers’ association that patrolled the Hudson River for evidence of pollution that could lead to lawsuits.
Kennedy’s involvement with Hudson Riverkeeper and the Natural Resources Defense Council ushered in a long chapter of environmental litigation and advocacy.
An outdoorsman and falconer, Kennedy sued companies and government agencies over pollution in the Hudson River and its watershed. (He joined the New York bar in 1985.) He earned a master’s degree in environmental law at Pace University, where he started a law clinic to primarily assist Riverkeeper’s legal work. He helped negotiate a 1997 agreement that protected upstate New York reservoirs supplying New York City’s drinking water.
In 1999, Kennedy founded the Waterkeeper Alliance, an international group of local river and bay-keeper organizations that act as their “community’s coast guard,” he told Vanity Fair in 2016. He stayed with the group until 2020, when he left “to devote himself, full-time, to other issues.”
On Joe Rogan’s podcast in June, Kennedy said that virtually all of his litigation involved “some scientific controversy. And so, I’m comfortable with reading science and I know how to read it critically.”
PolitiFact did not receive a response from Kennedy’s campaign for this story.
He became concerned about mercury pollution from coal-burning power plants; methylmercury can build up in fish, posing a risk to humans and wildlife. As he traveled around the country, he said, women started appearing in the front rows of his mercury lectures.
“They would say to me in kind of a respectful but vaguely scolding way, ‘If you’re really interested in mercury contamination exposure to children, you need to look at the vaccines,’” Kennedy told Rogan, whose show averages 11 million listeners an episode.
Kennedy said the women sounded “rational” as they explained a link between their children’s autism and vaccines. “They weren’t excitable,” he said. “And they had done their research, and I was like, ‘I should be listening to these people, even if they’re wrong.’”
He did more than listen. In June 2005, Rolling Stone and Salon co-published Kennedy’s article “Deadly Immunity.” Kennedy told an alarming story about a study that revealed a mercury-based additive once used in vaccines, thimerosal, “may have caused autism in thousands of kids.” Kennedy alleged that preeminent health agencies — the Centers for Disease Control and Prevention, the Food and Drug Administration, the World Health Organization — had colluded with vaccine manufacturers “to conceal the data.”
Kennedy’s premise was decried as inaccurate and missing context. He left out the ultimate conclusion of the 2003 study, by Thomas Verstraeten, which said “no consistent significant associations were found between [thimerosal-containing vaccines] and neurodevelopmental outcomes.”
Kennedy didn’t clearly state that, as a precaution, thimerosal was not being used in childhood vaccines when his article was published. He also misrepresented the comments of health agency leaders at a June 2000 meeting, pulling certain portions of a 286-page transcript that appeared to support Kennedy’s collusion narrative.
Scientists who have studied thimerosal have found no evidence that the additive, used to prevent germ growth, causes harm, according to a CDC FAQ about thimerosal. Unlike the mercury in some fish, the CDC says, thimerosal “doesn’t stay in the body, and is unlikely to make us sick.” Continued research has not established a link between thimerosal and autism.
By the end of July 2005, Kennedy’s Salon article had been appended with five correction notes. In 2011, Salon retracted the article. It disappeared from Rolling Stone.
Salon’s retraction was part of a broader conspiracy of caving “under pressure from the pharmaceutical industry,” Kennedy told Rogan. The then-Salon editor rejected this, saying they “caved to pressure from the incontrovertible truth and our journalistic consciences.”
Kennedy has not wavered in his belief: “Well, I do believe that autism does come from vaccines,” he told Fox News’ Jesse Watters in July.
David Remnick, editor of The New Yorker, interviewed Kennedy for a July story. Noting that Kennedy was focusing more on vaccine testing rather than outright opposition, Remnick asked him whether he was having second thoughts.
“I’ve read the science on autism and I can tell you, if you want to know,” Kennedy said. “David, you’ve got to answer this question: If it didn’t come from the vaccines, then where is it coming from?”
How Covid-19 Helped RFK Jr.’s Vaccine-Skeptical Crusade
In 2016, Kennedy launched the World Mercury Project to address mercury in fish, medicines, and vaccines. In 2018, he created Children’s Health Defense, a legal advocacy group that works “aggressively to eliminate harmful exposures,” its website says.
Since at least 2019, Children’s Health Defense has supported and filed lawsuits challenging vaccination requirements, mask mandates, and social media companies’ misinformation policies (including a related lawsuit against Facebook and The Poynter Institute, which owns PolitiFact).
From the beginning, the group has solicited stories about children “injured” by environmental toxins or vaccines. This year, it launched a national bus tour to collect testimonials. The organization also produces documentary-style films and books, including Kennedy’s “The Wuhan Cover-Up and the Terrifying Bioweapons Arms Race” and “The Real Anthony Fauci: Bill Gates, Big Pharma, and the Global War on Democracy and Public Health.”
In 2020, Children’s Health Defense and the anti-vaccine movement turned attention to the emerging public health crisis.
Kolina Koltai, a senior researcher at Bellingcat, an investigative journalism group, had seen anti-vaccine groups try to seize on Zika and Ebola outbreaks, with little success. But the covid-19 pandemic provided “the exact scenario” needed to create mass dissent: widespread fear and an information vacuum.
Children’s Health Defense published articles in March and April 2020 claiming the “viral terror” was an attempt to enact the “global immunization agenda” and a “dream come true” for dictators. The group echoed these points in ads and social media posts and grew its audience, including in Europe.
On X, then known as Twitter, Children’s Health Defense outperformed news outlets that met NewsGuard’s criteria for trustworthiness from the third quarter of 2020 to the fourth quarter of 2021, according to a report by the German Marshall Fund think tank, even as Children’s Health Defense published debunked information about covid-19 and vaccines.
In 2019, Children’s Health Defense reported it had $2.94 million in revenue, and paid Kennedy a $255,000 salary. Its revenue grew 440% through 2021, according to IRS filings, hitting $15.99 million. Kennedy’s salary increased to $497,013. (Its 2022 form 990 for tax disclosure is not yet public. Kennedy has been on leave from the organization since he entered the presidential race in April.)
On social media, the message had limits. Meta removed Kennedy’s personal Instagram account in February 2021 for spreading false claims about covid-19 and vaccines, the company said, but left his Facebook account active. A year and a half later, Meta banned Children’s Health Defense’s main Facebook and Instagram accounts for “repeatedly” violating its medical misinformation policies. Several state chapters still have accounts.
As the group’s face, Kennedy became a leader of a movement opposed to masks and stay-at-home orders, said David H. Gorski, managing editor of Science-Based Medicine and a professor of surgery and oncology at the Wayne State University School of Medicine.
“The pandemic produced a new generation of anti-vaxxers who had either not been prominent before or who were not really anti-vax before,” Gorski said. “But none of them had the same cultural cachet that comes with being a Kennedy that RFK Jr. has.”
Rallying a crowd before the Lincoln Memorial on Jan. 23, 2022, Kennedy protested covid-19 countermeasures alongside commentator Lara Logan and anti-vaccine activist Robert Malone. The crowd held signs reading “Nuremberg Trials 2.0” and “free choice, no masks, no tests, no vax.” When Kennedy took the stage, mention of his role with Children’s Health Defense prompted an exuberant cheer.
In his speech, Kennedy invoked the Holocaust to denounce the “turnkey totalitarianism” of a society that requires vaccinations to travel, uses digital currency and 5G, and is monitored by Microsoft Corp. co-founder Bill Gates’ satellites: “Even in Hitler’s Germany, you could cross the Alps into Switzerland. You could hide in an attic like Anne Frank did.”
Days later, facing criticism from his wife, the actor Cheryl Hines, Jewish advocacy groups, and Holocaust memorial organizations, Kennedy issued a rare apology for his comments.
Asked about his wife’s comment on Dec. 15 on CNN, he said his remarks were taken out of context but that he had to apologize because of his family.
Recycle. Repeat. Repeat.
When he’s asked about his views, Kennedy calmly searches his rhetorical laboratory for recycled talking points, selective research findings, the impression of voluminous valid studies, speculation, and inarguable authority from his experience. He refers to institutions, researchers, and reports, by name, in quick succession, shifting points before interviewers can note what was misleading or cherry-picked.
There is power in repetition. Take his persistent claim that vaccines are not safety-tested.
- In July, he told “Fox & Friends,” “Vaccines are the only medical product that is not safety-tested prior to licensure.”
- On Nov. 7 on PBS NewsHour, Kennedy said vaccines are “the only medical product or medical device that is allowed to get a license without engaging in safety tests.”
- On Dec. 15, he told CNN’s Kasie Hunt that no childhood vaccines have “ever been tested in a safety study pre-licensing.”
This is false. Vaccines, including the covid-19 vaccines, are tested for safety and effectiveness before they are licensed. Researchers gather initial safety data and information about side effects during phase 1 clinical trials on groups of 20 to 100 people. If no safety concerns are identified, subsequent phases rely on studies of larger numbers of volunteers to evaluate a vaccine’s effectiveness and monitor side effects.
Kennedy sometimes says that some vaccines weren’t tested against inactive injections or placebos. That has an element of truth: If using a placebo would disadvantage or potentially endanger a patient, researchers might test new vaccines against older versions with known side effects.
But vaccines are among “the most tested and vetted” pharmaceutical products given to children, said Patricia Stinchfield, a pediatric nurse practitioner and the president of the National Foundation for Infectious Diseases.
Kennedy encourages parents to research questions on their own, saying doctors and other experts are invariably compromised.
“They are taking as gospel what the CDC tells them,” Kennedy said on Bari Weiss’ “Honestly” podcast in June.
Public health agencies have been “serving the mercantile interests of the pharmaceutical companies, and you cannot believe anything that they say,” Kennedy said.
Experts fret that the Kennedy name carries weight.
“When he steps forward and he says the government’s lying to you, the FDA is lying to you, the CDC is lying to you, he has credence, because he’s seen as someone who is a product of the government,” said Paul Offit, a pediatrics professor in the Children’s Hospital of Philadelphia’s infectious diseases division and the director of the hospital’s Vaccine Education Center. “He’s like a whistleblower in that sense. He’s been behind the scenes, so he knows what it looks like, and he’s telling you that you’re being lied to.”
Kennedy name-drops studies that don’t support his commentary. When speaking with Rogan, Kennedy encouraged the podcaster’s staff to show a particular 2010 study that found that exposure to the herbicide atrazine caused some male frogs to develop female sex organs and become infertile.
Kennedy has repeatedly invoked that frog study to support his position that “we should all be looking at” atrazine and its impact on human beings. The researcher behind the study told PolitiFact in June that Kennedy’s atrazine claims were “speculation” given the vast differences between humans and amphibians. No scientific studies in humans link atrazine exposure to gender dysphoria.
In July, Kennedy floated the idea that covid-19 could have been “ethnically targeted” to “attack Caucasians and Black people. The people who are most immune are Ashkenazi Jews and Chinese.” The claim was ridiculously wrong, but Kennedy insisted that it was backed by a July 2020 study by Chinese researchers. That study didn’t find that Chinese people were less affected by the virus. It said one of the virus’s receptors seemed to be absent in the Amish and in Ashkenazi Jews and theorized that genetic factors might increase covid-19 severity.
Five months later, Kennedy invoked the study and insisted he was right: “I can understand why people were disturbed by those remarks. They certainly weren’t antisemitic. … I was talking about a true study, an NIH-funded study.”
“I wish I hadn’t said them, but, you know, what I said was true.”
Kennedy answered using scientific terms (“furin cleave,” “ACE2 receptor”), but he ignored explanations found in the study. He didn’t account for how the original virus has evolved since 2020, or how the study emphasized these potential mutations were rare and would have little to no public health impact.
Public health experts say that racial disparities in covid-19 infection and mortality — in the U.S., Black and Hispanic people often faced more severe covid-19 outcomes — resulted from social and economic inequities, not genetics.
Kennedy says “circumstantial evidence” is enough.
Antidepressants are linked to school shootings, he told listeners on a livestream hosted by Elon Musk. The government should have begun studying the issue years ago, he said, because “there’s tremendous circumstantial evidence that those, like SSRIs and benzos and other drugs, are doing this.”
Experts in psychiatry have told PolitiFact and other fact-checkers that there is no causal relationship between antidepressants and shootings. With 13% of the adult population using antidepressants, experts say that if the link were true they would expect higher rates of violence. Also, the available data on U.S. school shootings shows most shooters were not using psychiatric medicines, which have an anti-violence effect.
Conspiracy Theories, Consequences, and a Presidential Campaign
The anti-censorship candidate frames his first bid for public office as a response to “18 years” of being shunned for his views — partly by the government, but also by private companies.
“You’re protected so much from censorship if you’re running for president,” Kennedy told conservative Canadian podcaster and psychologist Jordan Peterson in June.
In June, Kennedy’s Instagram account was reinstated — with a verified badge noting he is a public figure. Meta’s rules on misinformation do not apply to active political candidates. (PolitiFact is a partner of Meta’s Third Party Fact-Checking Program, which seeks to reduce false content on the platform.)
In July, he was invited to testify before the Republican-led House Select Subcommittee on the Weaponization of the Federal Government. He repeated that he had “never been anti-vax,” and railed against the Biden White House for asking Twitter to remove his January 2021 tweet that said Baseball Hall of Famer Hank Aaron’s death was “part of a wave of suspicious deaths among elderly,” weeks after Aaron, 86, received a covid-19 vaccine. The medical examiner’s office said Aaron died from unrelated natural causes.
Throughout 2023, alternative media has embraced Kennedy. He has regularly appeared on podcasts such as Peterson’s, and has also participated in profiles by mainstream TV, online, and print sources.
“You’re like, ‘But you’re talking right now. I’m listening to you. I hear your words. You’re not being censored,’” said Whitney Phillips, an assistant professor in the School of Journalism and Communication at the University of Oregon who researches how news media covers conspiracy theories and their proponents. “But a person can believe they’re being censored because they’ve internalized that they’re going to be,” or they know making the claim will land with their audience.
Time will tell whether his message resonates with voters.
Kyle Kondik, managing editor of Sabato’s Crystal Ball at the University of Virginia Center for Politics, said Kennedy may be a “placeholder” for voters who are dissatisfied with Trump and Biden and will take a third option when offered by pollsters.
The only 2024 candidate whose favorability ratings are more positive than negative? It’s Kennedy, according to FiveThirtyEight. However, a much higher percentage of voters are unfamiliar with him than they are with Trump or Biden — about a quarter — and Kennedy’s favorability edge has decreased as his campaign has gone on.
Nevertheless, third-party candidates historically finish with a fraction of their polling, Kondik said, and voters will likely have more names and parties on their fall ballots, including philosopher Cornel West, physician Jill Stein, and a potential slate from the No Labels movement.
Kennedy was popular with conservative commentators before he became an independent, and he has avoided pointedly criticizing Trump, except on covid-19 lockdowns. When NBC News asked Kennedy in August what he thought of Trump’s 2020 election lies, Kennedy said he believed Trump lost, but that, in general, people who believe elections were stolen “should be listened to.” Kennedy is one of them. He still says that the 2004 presidential election was “stolen” from Kerry in favor of Republican George W. Bush, though it wasn’t.
American Values 2024 will spend up to $15 million to get Kennedy’s name on the ballot in 10 states including Arizona, California, Indiana, New York, and Texas. Those are five of the toughest states for ballot access, said Richard Winger, co-editor of Ballot Access News.
Four of Kennedy’s siblings called Kennedy’s decision to run as an independent “dangerous” and “perilous” to the nation. “Bobby might share the same name as our father, but he does not share the same values, vision or judgment,” the group wrote in a joint statement.
Kennedy brushes it off when asked, saying he has a large family and some members support him.
On her podcast, Weiss asked whether Kennedy worried his position on autism and vaccines would cloud his other positions and cost him votes. His answer ignored his history.
“Show me where I got it wrong,” he said, “and I’ll change.”
In a campaign constructed by lies, that might be the biggest one.
PolitiFact researcher Caryn Baird contributed to this report.
PolitiFact’s source list can be found here.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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1 year 5 months ago
COVID-19, Elections, Health Industry, Public Health, States, Children's Health, KFF Health News & PolitiFact HealthCheck, Legislation, Misinformation, vaccines
Eli Lilly’s latest $1.4 billion deal might come unglued
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Good morning, everyone. Damian here with another multibillion-dollar deal, a word on the future of Sanofi, and a setback in one of medicine’s longest-running quests.
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Good morning, everyone. Damian here with another multibillion-dollar deal, a word on the future of Sanofi, and a setback in one of medicine’s longest-running quests.
1 year 6 months ago
Biotech, Business, Health, Pharma, Politics, The Readout, biotechnology, drug development, drug prices, drug pricing, finance, Pharmaceuticals, Research, vaccines
What One Expectant Mom’s Effort To Get an RSV Shot Says About Health Policy
Today we bring you the story of a patient seeking the RSV vaccine — and how her frustrating journey illustrates why it can be so hard in the United States to get an important medicine recommended by federal regulators.
Hannah Fegley of Silver Spring, Md., says she spent seven hours on the phone last month — the eighth month of her pregnancy — with insurers, pharmacy benefit managers and half a dozen pharmacies trying to obtain Pfizer’s new RSV shot, called Abrysvo.
The Health 202 is a coproduction of The Washington Post and KFF Health News.
Respiratory syncytial virus puts up to 2 percent of babies in the hospital each year because their tiny airways don’t tolerate the inflammation. While most recover with supportive care, as many as 300 kids under 5 years old die each year and the majority of them are under 1. A bad case of RSV in infancy can mean a lifetime of asthma.
Fegley says two of her friends saw their babies land in intensive care last year, a bad one for RSV. So she was eager to get the shot; she has a 4-year-old in preschool who, she says, “brings home every virus.”
One of KFF Health News’ signature projects is the Bill of the Month, where readers and listeners send us stories about how the U.S. health system is failing them. Often, the problems they encounter connect directly to holes in government policy. Fegley’s story shows how regulators’ recommendations trickle down into a fragmented health system — leaving patients in the lurch.
The Pfizer vaccine (list price: about $300), confers immunity to the fetus through the mother. As an alternative, the Advisory Committee on Immunization Practices also recommended AstraZeneca’s Beyfortus (about $500), a monoclonal antibody against the virus to administer to babies after birth. Fegley’s obstetrician didn’t carry the vaccine. So she gave Fegley a prescription to get it at a pharmacy, predicting (correctly) that many pediatricians wouldn’t stock Beyfortus.
Pharmacies typically stock RSV vaccines because the CDC also recommends them for people over 60 — a large and lucrative market, even though scientists and public health authorities agree the more obvious use is in infants. There are two different RSV vaccines approved for older Americans: the Pfizer shot, which is also approved for pregnant women, and a GlaxoSmithKline shot that is not.
Fegley’s insurer uses CVS-Caremark as its pharmacy benefits manager, which of course uses CVS Pharmacy. (Both are part of CVS Health Corp.) And CVS, she discovered, only stocks the GSK vaccine.
(Is your head spinning yet? Hers was. And she is health-care literate — a social worker whose husband is a doctor. “We’re told we have choice, but we really do not,” she said.)
After a phone complaint, a Caremark representative granted Fegley an “override” allowing her to try other pharmacies. She called them, but many said they’d only give the Pfizer shot to people 60 and over.
“We’re currently completing the final steps needed to offer the maternal RSV vaccine and hope to make it available at our pharmacies soon,” said Matt Blanchette, a CVS Health spokesman representing Caremark and the pharmacy. “Patients should check with their insurer to confirm if the vaccine is covered by their individual plan.”
One smaller pharmacy said by phone it had a dose for Fegley, but when they checked her insurance at the counter, it was denied. She filled out forms to get a shot at both Costco and Walgreens. Denied.
She didn’t want to pay $300 or more for the shot out-of-pocket because she knew that under Obamacare, most insurers must cover all ACIP-recommended vaccines free of charge. So how can it be so hard to obtain a shot that the FDA and CDC say can save babies’ lives? Let us count the ways.
- One: The Affordable Care Act gives insurers more than a year after a new vaccine wins ACIP’s stamp of approval to start covering it.
- Two: To keep costs down, pharmacies try to get deals on similar products by contracting with just one drugmaker. GSK didn’t finish its application to the FDA for approval to give its shot to pregnant women.
- Three: Many pharmacies don’t like giving pregnant women shots, fearing liability.
- Four: Both obstetricians (for the Pfizer shot) and pediatricians (the monoclonal antibody) have a hard time stocking such expensive medicines — particularly with insurance reimbursement uncertain.
“Cost is the big issue,” said Steven Abelowitz of Coastal Kids, a big California group practice. “For us, it was a tough, risky decision: We’ve spent millions to order batches and we don’t know if we’ll get reimbursed,” he said. “Smaller practices just don’t have the money.”
There’s a happy-ish ending: This month, a Caremark representative left Fegley a voice mail saying she had an override to get the Pfizer vaccine at Costco for $105 out of pocket. If she wanted it free, the rep added, she should contact her husband’s employer.
With some resentment, she says, she paid for the shot.
This article is not available for syndication due to republishing restrictions. If you have questions about the availability of this or other content for republication, please contact NewsWeb@kff.org.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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1 year 7 months ago
Health Industry, Public Health, Children's Health, The Health 202, vaccines
First vaccine for chikungunya virus, an 'emerging global health threat,' gets FDA approval
The U.S. Food and Drug Administration (FDA) on Thursday announced its approval of Ixchiq, the first chikungunya vaccine.
The vaccine, which is made by Valneva, is approved for anyone age 18 and older who has a risk of being exposed to the virus.
The U.S. Food and Drug Administration (FDA) on Thursday announced its approval of Ixchiq, the first chikungunya vaccine.
The vaccine, which is made by Valneva, is approved for anyone age 18 and older who has a risk of being exposed to the virus.
The chikungunya virus is transmitted to people through bites from infected mosquitoes.
CHILDHOOD VACCINATIONS ARE AT AN ALL-TIME LOW, THE CDC REVEALS
"This virus is in a similar category as dengue or Zika and is carried by the same mosquitoes," noted Dr. Marc Siegel, clinical professor of medicine at NYU Langone Medical Center and a Fox News medical contributor.
The FDA described chikungunya as an "emerging global health threat," with at least five million cases reported over the past 15 years.
"Infection with chikungunya virus can lead to severe disease and prolonged health problems, particularly for older adults and individuals with underlying medical conditions," said Peter Marks, M.D., PhD, director of the FDA’s Center for Biologics Evaluation and Research, in a press release on Thursday.
COVID-19, FLU AND RSV VACCINES ARE ALL AVAILABLE THIS FALL: SEE WHAT SOME DOCTORS RECOMMEND AND WHY
"Today’s approval addresses an unmet medical need and is an important advancement in the prevention of a potentially debilitating disease with limited treatment options," he also said.
Before the FDA’s approval, the vaccine’s safety was tested in clinical trials that included 3,500 adults.
Participants most commonly reported headache, muscle pain, fatigue, joint pain, nausea, fever and tenderness at the injection site as side effects.
A small share of recipients (1.6%) experienced adverse reactions, with two of the recipients needing to be hospitalized, per the FDA’s release.
In a separate study, the vaccine’s efficacy was measured based on the immune response data of 266 adult participants.
Almost all of them were shown to have protective antibody levels.
The most common symptoms are fever and joint pain, with some people also experiencing headache, muscle pain, joint swelling or rash, according to the Centers for Disease Control and Prevention (CDC).
IS IT JUST A MOSQUITO BITE — OR COULD IT BE 'SKEETER SYNDROME'? HERE'S WHAT TO KNOW
Symptoms usually begin within three to seven days after transmission.
Most people who contract the virus get better within a week.
In rare cases, the virus can cause severe and long-lasting joint pain.
Those at highest risk for adverse health effects include older adults, newborns who contract the infection at birth, and people with heart disease, diabetes or high blood pressure, per the CDC.
Deaths from the virus are very rare.
Mosquitoes carrying the chikungunya virus are endemic in Africa, Southeast Asia and parts of the Americas, the FDA stated in its release.
Before 2013, cases of the chikungunya virus were primarily documented in Africa, Asia, Europe, and the Indian and Pacific Oceans.
DENGUE FEVER: WHAT YOU NEED TO KNOW ABOUT THE MOSQUITO-BORNE ILLNESS SWEEPING JAMAICA
In late 2013, the first local cases were documented in Caribbean countries, which then led to the virus spreading throughout the Americas, the CDC stated.
For those who have been exposed and have symptoms, a blood test can confirm the presence of chikungunya or other similar viruses.
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People who are infected and experience symptoms should rest, stay hydrated with fluids and take over-the-counter medications, such as acetaminophen or paracetamol, to relieve and reduce fever, according to the CDC.
People who are traveling to countries where the virus is prevalent can reduce their risk by using insect repellent, wearing long-sleeved shirts and pants, and staying indoors or in screened areas.
Siegel noted that the vaccine — which he deems "safe and effective" — contains a live weakened version of the virus vaccine.
"That means it is not intended for [the] immunocompromised, but it is useful for those at risk of severe cases of chikungunya," he told Fox News Digital.
Added the doctor, "The vaccine is being fast-tracked, which for me means I would give it to those most at risk first, while watching post-marketing studies over next year."
1 year 7 months ago
Health, vaccines, infectious-disease, viruses, lifestyle, insects, medications
A New Era of Vaccines Leaves Old Questions About Prices Unanswered
The world is entering a new era of vaccines. Following the success of covid-19 mRNA shots, scientists have a far greater capacity to tailor shots to a virus’s structure, putting a host of new vaccines on the horizon.
The world is entering a new era of vaccines. Following the success of covid-19 mRNA shots, scientists have a far greater capacity to tailor shots to a virus’s structure, putting a host of new vaccines on the horizon.
The most recent arrivals — as anyone on the airwaves or social media knows — are several new immunizations against respiratory syncytial virus, or RSV.
These shots are welcome since RSV can be dangerous, even deadly, in the very old and very young. But the shots are also expensive — about $300 for those directed at adults, and up to $1,000 for one of the shots, a monoclonal antibody rather than a traditional vaccine, intended for babies. Many older vaccines cost pennies.
So their advent is forcing the United States to face anew questions it has long sidestepped: How much should an immunization that will possibly be given — maybe yearly — to millions of Americans cost to be truly valuable? Also, given the U.S. is one of two countries that permit direct advertising to consumers: How can we ensure the shots get into the arms of people who will truly benefit and not be given, at great expense, to those who will not?
Already, ads on televisions and social media show active retirees playing pickleball or going to art galleries whose lives are “cut short by RSV.” This explains the lines for the shot at my local pharmacy.
But indiscriminate use of expensive shots could strain both public and private insurers’ already tight budgets.
Other developed countries have deliberate strategies for deciding which vulnerable groups need a particular vaccine and how much to pay for it. The U.S. does not, and as specialized vaccines proliferate, public programs and private insurers will need to grapple with how to use and finance shots that can be hugely beneficial for some but will waste precious health dollars if taken by all.
A seasonal viral illness, RSV can cause hospitalization or, in rare cases, death in babies and in people age 75 or older, as well as those with serious underlying medical conditions such as heart disease or cancer. For most people who get RSV, it plays out as a cold; you’ve likely had RSV without knowing it.
But RSV puts about 2% of babies under age 1 in the hospital and kills between 100 and 300 of those under 6 months, because their immune systems are immature and their airways too narrow to tolerate the inflammation. Merely having a bad case of RSV in young childhood increases the risk of long-term asthma.
That’s why Barney Graham, the scientist who spent decades at the government’s National Institutes for Health perfecting the basic science that led to the current shots, said: “The most obvious use is in infants,” not adults.
That’s also why European countries trying to figure out how best to use these vaccines without breaking the bank focused first on babies and determining a sensible price. Though more of the very old may die of RSV, the years of life lost are much greater for the very young. (Babies can get the monoclonal antibody shot or gain protection through a traditional vaccine given to the mother near the end of pregnancy, conferring immunity through the womb.)
A consortium of European experts led by Philippe Beutels, a professor in health economics at the University of Antwerp in Belgium, calculated that the shots would only be “worth it” in terms of the lives saved and hospitalizations averted in infants if the price were under about $80, he said in a phone interview. That’s because almost all babies make it through RSV with supportive care.
The calculation will be used by countries such as Belgium, England, Denmark, Finland, and the Netherlands to negotiate a set price for the two infant shots, followed by decisions on which version should be offered, depending partly on which is more affordable.
They have not yet considered how to distribute the vaccines to adults — considered less pressing — because studies show that RSV rarely causes severe disease in adults who live outside of care settings, such as a nursing home.
Why did the United States and Europe approach the problem from opposite directions?
In the U.S., there was a financial incentive: Roughly 3.7 million babies are born each year, while there are about 75 million Americans age 60 and older — the group for whom the two adult vaccines were approved. And about half of children get their vaccines through the Vaccines for Children program, which negotiates discounted prices.
Also, babies can get vaccinated only by their clinicians. Adults can walk into pharmacies for vaccinations, and pharmacies are only too happy to have the business.
But which older adults truly benefit from the shot? The two manufacturers of the adult vaccines, GSK and Pfizer, conducted their studies presented to the FDA for approval in a population of generally healthy people 60 and older, so that’s the group to whom they may be marketed. And marketed they are, even though the studies didn’t show the shots staved off hospitalization or death in people ages 60 to 75.
That led to what some have called a “narrow” endorsement from the Centers for Disease Control and Prevention’s Advisory Committee on Immunization Practices for people 60 to 75: Patients in that age range could get the shot after “shared clinical decision-making” with a health provider.
It is likely that because of this fuzzy recommendation, some Americans 60 and over with commercial insurance are finding that their insurers won’t cover it. Under Obamacare, insurers are generally required to cover at no cost vaccines that are recommended by the ACIP; however, if a provider recommends vaccination, then it must be covered by insurance.
(In late September, the ACIP recommended immunization of all babies with either the antibody or the maternal vaccine. Insurers have a year to commence coverage and many have been dragging their feet because of the high price.)
There are better and more equitable ways to steer the shots into the arms of those who need it, rather than simply administering it to those who have the “right” insurance or, swayed by advertising, can pay. For example, insurers, including Medicare, could be required to cover only those ages 60 to 75 who have a prescription from a doctor, indicating shared decision-making has occurred.
Finally, during the pandemic emergency, the federal government purchased all covid-19 vaccines in bulk at a negotiated price, initially below $20 a shot, and distributed them nationally. If, to protect public health, we want vaccines to get into the arms of all who benefit, that’s a more cohesive strategy than the patchwork one used now.
Vaccines are miraculous, and it’s great news that they now exist to prevent serious illness and death from RSV. But using such novel vaccines wisely — directing them to the people who need them at a price they can afford — will be key. Otherwise, the cost to the health system, and to patients, could undermine this big medical win.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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1 year 7 months ago
Aging, Health Care Costs, Health Industry, Pharmaceuticals, Public Health, CDC, Children's Health, Drug Costs, vaccines
Epidemic: What Good Is a Vaccine When There Is No Rice?
The 1970s was the deadliest decade in the “entire history of Bangladesh,” said environmental historian Iftekhar Iqbal. A deadly cyclone, a bloody liberation war, and famine triggered waves of migration. As people moved throughout the country, smallpox spread with them.
In Episode 7 of “Eradicating Smallpox,” Shohrab, a man who was displaced by the 1970 Bhola cyclone, shares his story. After fleeing the storm, he and his family settled in a makeshift community in Dhaka known as the Bhola basti. Smallpox was circulating there, but the deadly virus was not top of mind for Shohrab. “I wasn’t thinking about that. I was more focused on issues like where would I work, what would I eat,” he said in Bengali.
When people’s basic needs — like food and housing — aren’t met, it’s harder to reach public health goals, said Bangladeshi smallpox eradication worker Shahidul Haq Khan.
He encountered that obstacle frequently as he traveled from community to community in southern Bangladesh.
He said people asked him: “There’s no rice in people’s stomachs, so what is a vaccine going to do?”
To conclude this episode, host Céline Gounder speaks with Sam Tsemberis, president and CEO of Pathways Housing First Institute.
He said when public health meets people’s basic needs first, it gives them the best shot at health.
The Host:
Céline Gounder
Senior Fellow & Editor-at-Large for Public Health, KFF Health News
Céline is senior fellow and editor-at-large for public health with KFF Health News. She is an infectious diseases physician and epidemiologist. She was an assistant commissioner of health in New York City. Between 1998 and 2012, she studied tuberculosis and HIV in South Africa, Lesotho, Malawi, Ethiopia, and Brazil. Gounder also served on the Biden-Harris Transition COVID-19 Advisory Board.
In Conversation With Céline Gounder:
Sam Tsemberis
Founder, president, and CEO of Pathways Housing First Institute
Voices From the Episode:
Shohrab
Resident of the Bhola basti in Dhaka
Iftekhar Iqbal
Associate professor of history at the Universiti Brunei Darussalam
Shahidul Haq Khan
Former World Health Organization smallpox eradication program worker in Bangladesh
Click to open the transcript
Transcript: What Good Is a Vaccine When There Is No Rice?
Podcast Transcript
Epidemic: “Eradicating Smallpox”
Season 2, Episode 7: What Good Is a Vaccine When There Is No Rice?
Air date: Oct 24, 2023
Editor’s note: If you are able, we encourage you to listen to the audio of “Epidemic,” which includes emotion and emphasis not found in the transcript. This transcript, generated using transcription software, has been edited for style and clarity. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.
[Ambient sounds from a ferry play softly.]
Céline Gounder: I’m on a boat in southern Bangladesh, headed toward Bhola, the country’s largest island.
We’re traveling by ferry on calm waters. But my head spins — and my stomach roils just a bit — as I imagine how these same waters nearly destroyed Bhola Island.
[Tense instrumental music begins playing.]
It was 1970.
In November, under an almost-full moon and unusually high tides.
The island was hit by one of the most destructive tropical storms in modern history: the Bhola cyclone.
[Shohrab speaking in Bengali fades under English translation.]
Shohrab: There were floods. Back then there weren’t any embankments to stop the water from rising.
Céline Gounder: Counterclockwise winds, torrential rains, and treacherous waves swept entire villages into the sea. People held onto whatever they could to keep their heads above water.
[Shohrab speaking in Bengali fades under English translation.]
Shohrab: I remember at that time the water level rose so high that people ended up on top of trees. The water had so much force. Many people died.
Céline Gounder: The Bhola cyclone killed some 300,000 people. And for those who survived, there wasn’t much left to return to. Hundreds of thousands of people lost their homes, their farms, and their access to food.
The man whose voice you’ve been hearing was one of the survivors.
[Shohrab speaking in Bengali fades under English translation.]
Shohrab: My name is Shohrab. I am 70 years old.
Céline Gounder: Shohrab was a teenager when the cyclone hit. And in the days and weeks after the storm, he and his family joined a mass migration of people who fled southern Bangladesh.
They traveled about a hundred miles north from Bhola Island to the streets of Dhaka, the busy capital of Bangladesh.
There, they settled in a makeshift community, a kind of unsanctioned encampment dubbed the Bhola basti.
In Bengali that word,“basti,” means settlement — or “slum,” in some translations.
The residents forged a community, but soon, the poor people there — and what they built — would be seen as a threat to the effort to keep smallpox in check.
Not just in South Asia — but around the world.
I’m Dr. Céline Gounder. This is “Epidemic.”
[“Epidemic” theme music plays.]
[Ambient sounds from the Bhola basti, including voices of people speaking Bengali, play softly.]
Céline Gounder: More than 50 years after the cyclone, Shohrab lives in the same area in Dhaka.
I interviewed him at a tea stall near his home. It’s the kind of place where men gather to gossip and share stories over hot drinks.
Inside there’s a colorful display of snacks and sweets hanging from the ceiling. Just outside we sat on well-worn wooden benches.
And as we sip our tea, he tells me about life in the encampment in the 1970s …
[Sparse music plays softly.]
[Shohrab speaking in Bengali fades under English translation.]
Shohrab: I used to rent a place there. Five or six of us used to live in one room. Sometimes it was eight people in a room.
Céline Gounder: To cover his portion of the rent he worked as a day laborer, doing odd jobs here and there. Over time the basti became home.
But Shohrab’s new home was likely seen as an eyesore by outsiders — and by the Bangladeshi government.
Such settlements often lack running water, or electricity, or access to proper sanitation. Those conditions spotlight suffering — and for local leaders that spotlight can be uncomfortable.
But, public health experts had a different concern: that the settlement of Bhola migrants in Dhaka would become a deadly stronghold for smallopox. Cramped and unsanitary living conditions put the residents at high risk.
I ask Shohrab if he remembers seeing or hearing about people with smallpox when he first arrived.
[Shohrab speaking in Bengali fades under English translation.]
Shohrab: I wasn’t thinking about that. I was more focused on issues like where would I work, what would I eat, etc.
Céline Gounder: As he tried to rebuild his life, other things — like food and shelter — were more urgent.
[Music fades to silence.]
Widening beyond that one migrant encampment in Dhaka, researchers say the picture was similar in cities and villages all across the country.
Bangladesh was hit with a series of crises. Environmental historian Iftekhar Iqbal says each brought human suffering — and that each was a blow to the smallpox eradication effort.
Iftekhar Iqbal: Seventies was really a time when, the coming of the smallpox couldn’t come at a, at a more unfortunate time.
Céline Gounder: In 1970 the Bhola cyclone hit. In 1971, just four months later, the country fought a bloody liberation war. Then, in 1974, heavy rain and flooding triggered a famine. And in 1975 there was a military coup.
Iftekhar Iqbal: The 1970s was the deadliest decade in the history of Bangladesh.
Céline Gounder: This period is when the country became Bangladesh — winning its independence from Pakistan in the liberation war. But residents of the young nation faced cascading upheaval and turmoil. And too much death.
[Instrumental music plays softly.]
On the global stage stopping smallpox was important, but many in Bangladesh were just trying to make it to the next day.
Daniel Tarantola: No. 1 priority is food and food and food. And the second priority is food and food and food.
This was an area where survival was always in question.
Céline Gounder: That’s Daniel Tarantola.
He’s from France and arrived in the region with the mission of helping to eradicate smallpox, but he says the people in front of him needed help with many other things.
Besides hunger, some of the villages he visited were dealing with two epidemics: smallpox and cholera.
Daniel Tarantola: And we were not equipped to do anything but smallpox containment and smallpox eradication. By design or by necessity, we didn’t have the means to do anything much more than that.
Céline Gounder: Over the course of this season we’ve talked about big, complicated issues — like stigma and bias, distrust, or First World arrogance — that threatened to derail the smallpox eradication campaign. We’ve documented the public health workers who found a way around those roadblocks.
But sometimes the need is so big, so entrenched, that your inability to meet it can be demoralizing. I sometimes felt that during my own fieldwork: battling HIV and tuberculosis in Brazil and southern Africa, and during an Ebola outbreak in Guinea, West Africa.
Daniel Tarantola says in South Asia the best he could do was focus on the task at hand.
Daniel Tarantola: Meaning that you had to set up a program to eradicate smallpox or at least eliminate it from Bangladesh and at the same time not get … if I can use the word distracted, um, by other issues that prevailed in Bangladesh.
[Music fades out.]
Céline Gounder: Those were tough emotional realities for health workers and the people they wanted to care for.
But …
Daniel Tarantola: The level of resilience of this population is absolutely incredible given the number of challenges that they have had to survive.
Céline Gounder: One of the main ways people survived the upheaval in Bangladesh was by picking up and moving away from the things trying to kill them.
Remember how Shohrab fled to Dhaka after the cyclone?
Well, mass migration is a survival strategy — but one that can worsen disease.
When the cyclone refugees from Bhola landed in that under-resourced basti in Dhaka, all smallpox needed was an opportunity to spread.
[Solemn music begins playing.]
That opportunity came in 1975 when the Bangladeshi government decided to bulldoze the Bhola basti.
Daniel Tarantola says it was a bad idea.
Daniel Tarantola: We knew there was smallpox transmission in this particular area and therefore they should wait until the outbreak subsides before dismantling the shanties.
Céline Gounder: Government officials did not wait for the outbreak to subside. They bulldozed the basti anyway.
Daniel Tarantola: That resulted in a wide spread of smallpox.
Céline Gounder: Here’s environmental historian Iftekhar Iqbal again.
Iftekhar Iqbal: This eviction is considered one of the policy errors that led to the second wave of postwar smallpox.
Céline Gounder: In the wake of that eviction in 1975, thousands of people scattered. Some surely returned back home to Bhola.
[Music fades out.]
Céline Gounder: Public health’s failure — the government’s failure — to meet the basic need for safety, for food and housing, delayed the goal to stop the virus.
Shahidul Haq Khan, the Bangladeshi public health worker and granddad we met in Episode 4, says he learned that lesson over and over as he urged people to accept the smallpox vaccination.
Their frustration with him — and by extension public health — was clear.
[Shahidul speaking in Bengali fades under English translation.]
Shahidul Haq Khan: There was no rice in people’s stomachs, so what is a vaccine going to do? “You couldn’t bring rice? Why did you bring all this stuff?” That was the type of situation we had to deal with.
[Atmospheric music begins playing.]
Céline Gounder: What good is a vaccine when there is no rice?
Next up, I speak with Sam Tsemberis, founder of Pathways Housing First Institute. It’s an organization that advocates for meeting people’s basic needs first, so they’ll have the best shot at health.
But in the beginning, he found out convincing institutions was easier said than done:
Sam Tsemberis: I try to explain this rationale that I’m telling you, like people need housing first and then services. The hospital is like, “No, no, we’re in the hospital business. We’re not in the housing business.”
Céline Gounder: That’s after the break.
[Music fades to silence.]
Céline Gounder: One of my mentors was Dr. Paul Farmer, the legendary doctor and anthropologist whose work in Haiti was documented by Tracy Kidder in the book “Mountains Beyond Mountains.” Paul always pushed us to look beyond the symptoms to root causes. It’s a lesson we keep having to learn in public health again and again.
Sam Tsemberis is one of the first to apply it to homelessness. He’s the CEO of a nonprofit called the Pathways Housing First Institute. The organization promotes a model of addressing homelessness that begins with putting people into housing.
That idea seems pretty obvious. But back when Sam first started working on homelessness — in New York City in the 1980s — the prevailing model was more like a staircase. People had to work their way up to show they were ready for, or even worthy of, housing.
Sam Tsemberis: If you showed up applying for housing, you had to acknowledge you had a mental illness, you had to demonstrate that you were taking medication, and that you understood why you were taking medication. And you also had to have — if you had any history of alcohol or substance use, you also had to demonstrate a period of sobriety.
It was a very tough regimen to get into housing.
Céline Gounder: Sam said he quickly realized that wasn’t working, even though it was the only approach at the time.
Sam Tsemberis: I was working very hard to help people navigate that. I was doing street outreach. So, “Come come to the shelter, come to the hospital, come to a treatment program, a drop-in center,” hoping that they would engage and successfully make it up the stairs and get housing eventually.
And what began to emerge was that even if people were willing to take the first step — let’s say go to detox or go to the hospital — far too many people ended up returning to the street, which was, which was a signal that, you know, something was wrong with this system. It’s like, why are people falling back?
And the stories on the street were compelling. You know, people would say, “No, I don’t need to go to detox. What I need is a safe place to stay.”
Or, “Yeah, I’ve been diagnosed with schizophrenia, but … you know, and I still hear voices, but I don’t pay attention to them. Right now, I’m just cold, I’m tired, I’m hungry, I need a place to be safe. I need to go inside. That’s what I need first.”
And the repeated pleas for safety, security, a place to call home, from people that had tried and failed and tried and failed that staircase system is what compelled me to, you know, try something different, because what we were doing wasn’t working. And that’s when we started this housing-first approach.
Céline Gounder: Can you explain: What is that, and what’s its impact?
Sam Tsemberis: Housing-first is the answer to a question that we ask people. “OK, what is it that you want?” And people would inevitably say, “I want a place to live, isn’t it obvious?”
So our job as providers, then, was to figure out a way to have a program that we can get money for rent, and money for case management services, and give people who had previously no opportunity to get into housing on their own terms, and also offer the kind of clinical or social or emotional support that’s needed after people get housed.
Céline Gounder: So how did you pilot or how did you jump-start this effort? What did that look like?
Sam Tsemberis: So we ended up having to start our own nonprofit agency, apply for a grant, and we, with fingers crossed, we started to take people that were actively using and in some cases actively symptomatic and put them into apartments of their own and visit them a lot, not knowing how it would turn out.
What we found, much to our shock and surprise, very pleasant surprise, is that 85% of the people we housed, even in that first year, remained housed. And we thought, well, you know, we’re onto something here.
Céline Gounder: So instead of insisting that people be treated for addiction and mental health issues before they got into housing, you gave them housing first. And that was really sort of the measure of success.
Sam Tsemberis: Yes.
Céline Gounder: How successful was the program in treating addiction and mental health?
Sam Tsemberis: The addiction and mental health treatment outcomes were modestly better for the housing-first group that didn’t require to be in treatment. But you know, their treatment was no worse and a little better than the group that required treatment and sobriety.
And there, a measure called the overall quality of life, you know, like, how happy are you with living in the community, with your contacts with relatives, and so on. The group that went into housing first had a significantly higher quality of life than the treatment-first group.
Céline Gounder: So I know there are people out there who will say, Well, you didn’t solve their addiction issue or their mental health issue; how is that a success? How would you respond to that criticism?
Sam Tsemberis: This was never advertised as a program that cures addiction or cures mental illness. Recovery, in some ways, is not abstinence. Recovery, at least in the mental health business, is having a life in spite of your diagnosis.
The main thing is you’re no longer homeless. You know, you don’t have to be on the street until you’ve cured your illness. Because if that was the case, people would likely die on the street before they cured their illness because we don’t have cures for some of these illnesses.
Céline Gounder: So, Sam, Dr. Paul Farmer was a mentor of mine, actually, over the course of my training. And in Tracy Kidder’s biography of Paul, there’s a quote of one of Paul’s colleagues, Haitian colleagues, who says that, “Giving people medicine for tuberculosis and not giving them food is like washing your hands and drying them in the dirt.”
Sam Tsemberis: That is so on target for what all of these issues are about. I think of homelessness, actually, as a poorly named term for all of the systemic failures that people have faced in order to end up homeless.
We need to get, you know, take care of the emergency, put everyone in housing, but that’s sort of the beginning of the job. Then the real work starts to address the root causes that contribute and continue to increase the problem as opposed to just dealing with the symptom all the time.
[“Epidemic” theme music begins playing.]
Céline Gounder: Next time, on the series finale of “Epidemic: Eradicating Smallpox” …
Rahima Banu.
Redwan Ahmed: Rahima Banu.
Daniel Tarantola: Rahima Banu.
Iftekhar Iqbal: Rahima Banu.
Larry Brilliant: The last case …
Steve Jones: The last case …
Alan Schnur: The last case of variola major smallpox. I think this time we’ve got it.
Céline Gounder: “Eradicating Smallpox,” our latest season of “Epidemic,” is a co-production of KFF Health News and Just Human Productions.
Additional support provided by the Sloan Foundation.
This episode was produced by Taylor Cook, Zach Dyer, Bram Sable-Smith, and me.
Saidu Tejan-Thomas Jr. was scriptwriter for the episode.
Redwan Ahmed was our translator and local reporting partner in Bangladesh.
Our managing editor is Taunya English.
Oona Tempest is our graphics and photo editor.
The show was engineered by Justin Gerrish.
We had extra editing help from Simone Popperl.
Voice acting by Susheel C. and Pinaki Kar.
Music in this episode is from the Blue Dot Sessions and Soundstripe.
We’re powered and distributed by Simplecast.
If you enjoyed the show, please tell a friend. And leave us a review on Apple Podcasts. It helps more people find the show.
Follow KFF Health News on X (formerly known as Twitter), Instagram, and TikTok.
And find me on X @celinegounder. On our socials, there’s more about the ideas we’re exploring on our podcasts.
And subscribe to our newsletters at kffhealthnews.org so you’ll never miss what’s new and important in American health care, health policy, and public health news.
I’m Dr. Céline Gounder. Thanks for listening to “Epidemic.”
[“Epidemic” theme fades out.]
Credits
Taunya English
Managing Editor
Taunya is senior editor for broadcast innovation with KFF Health News, where she leads enterprise audio projects.
Zach Dyer
Senior Producer
Zach is senior producer for audio with KFF Health News, where he supervises all levels of podcast production.
Taylor Cook
Associate Producer
Taylor is associate audio producer for Season 2 of Epidemic. She researches, writes, and fact-checks scripts for the podcast.
Oona Tempest
Photo Editing, Design, Logo Art
Oona is a digital producer and illustrator with KFF Health News. She researched, sourced, and curated the images for the season.
Additional Newsroom Support
Lydia Zuraw, digital producer Tarena Lofton, audience engagement producer Hannah Norman, visual producer and visual reporter Simone Popperl, broadcast editor Chaseedaw Giles, social media manager Mary Agnes Carey, partnerships editor Damon Darlin, executive editor Terry Byrne, copy chief Chris Lee, senior communications officer
Additional Reporting Support
Swagata Yadavar, translator and local reporting partner in IndiaRedwan Ahmed, translator and local reporting partner in Bangladesh
Epidemic is a co-production of KFF Health News and Just Human Productions.
To hear other KFF Health News podcasts, click here. Subscribe to Epidemic on Apple Podcasts, Spotify, Google, Pocket Casts, or wherever you listen to podcasts.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
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This story can be republished for free (details).
1 year 7 months ago
Multimedia, Public Health, Environmental Health, Epidemic, Podcasts, vaccines