Category: Rehab News

Preparing cancer patients for difficult decisions is an oncologist’s job. They don’t always remember to do it, however. At the University of Pennsylvania Health System, doctors are nudged to talk about a patient’s treatment and end-of-life preferences by an artificially intelligent algorithm that predicts the chances of death.

But it’s far from being a set-it-and-forget-it tool. A routine tech checkup revealed the algorithm decayed during the covid-19 pandemic, getting 7 percentage points worse at predicting who would die, according to a 2022 study.

There were likely real-life impacts. Ravi Parikh, an Emory University oncologist who was the study’s lead author, told KFF Health News the tool failed hundreds of times to prompt doctors to initiate that important discussion — possibly heading off unnecessary chemotherapy — with patients who needed it.

He believes several algorithms designed to enhance medical care weakened during the pandemic, not just the one at Penn Medicine. “Many institutions are not routinely monitoring the performance” of their products, Parikh said.

Algorithm glitches are one facet of a dilemma that computer scientists and doctors have long acknowledged but that is starting to puzzle hospital executives and researchers: Artificial intelligence systems require consistent monitoring and staffing to put in place and to keep them working well.

In essence: You need people, and more machines, to make sure the new tools don’t mess up.

“Everybody thinks that AI will help us with our access and capacity and improve care and so on,” said Nigam Shah, chief data scientist at Stanford Health Care. “All of that is nice and good, but if it increases the cost of care by 20%, is that viable?”

Government officials worry hospitals lack the resources to put these technologies through their paces. “I have looked far and wide,” FDA Commissioner Robert Califf said at a recent agency panel on AI. “I do not believe there’s a single health system, in the United States, that’s capable of validating an AI algorithm that’s put into place in a clinical care system.”

AI is already widespread in health care. Algorithms are used to predict patients’ risk of death or deterioration, to suggest diagnoses or triage patients, to record and summarize visits to save doctors work, and to approve insurance claims.

If tech evangelists are right, the technology will become ubiquitous — and profitable. The investment firm Bessemer Venture Partners has identified some 20 health-focused AI startups on track to make $10 million in revenue each in a year. The FDA has approved nearly a thousand artificially intelligent products.

Evaluating whether these products work is challenging. Evaluating whether they continue to work — or have developed the software equivalent of a blown gasket or leaky engine — is even trickier.

Take a recent study at Yale Medicine evaluating six “early warning systems,” which alert clinicians when patients are likely to deteriorate rapidly. A supercomputer ran the data for several days, said Dana Edelson, a doctor at the University of Chicago and co-founder of a company that provided one algorithm for the study. The process was fruitful, showing huge differences in performance among the six products.

It’s not easy for hospitals and providers to select the best algorithms for their needs. The average doctor doesn’t have a supercomputer sitting around, and there is no Consumer Reports for AI.

“We have no standards,” said Jesse Ehrenfeld, immediate past president of the American Medical Association. “There is nothing I can point you to today that is a standard around how you evaluate, monitor, look at the performance of a model of an algorithm, AI-enabled or not, when it’s deployed.”

Perhaps the most common AI product in doctors’ offices is called ambient documentation, a tech-enabled assistant that listens to and summarizes patient visits. Last year, investors at Rock Health tracked $353 million flowing into these documentation companies. But, Ehrenfeld said, “There is no standard right now for comparing the output of these tools.”

And that’s a problem, when even small errors can be devastating. A team at Stanford University tried using large language models — the technology underlying popular AI tools like ChatGPT — to summarize patients’ medical history. They compared the results with what a physician would write.

“Even in the best case, the models had a 35% error rate,” said Stanford’s Shah. In medicine, “when you’re writing a summary and you forget one word, like ‘fever’ — I mean, that’s a problem, right?”

Sometimes the reasons algorithms fail are fairly logical. For example, changes to underlying data can erode their effectiveness, like when hospitals switch lab providers.

Sometimes, however, the pitfalls yawn open for no apparent reason.

Sandy Aronson, a tech executive at Mass General Brigham’s personalized medicine program in Boston, said that when his team tested one application meant to help genetic counselors locate relevant literature about DNA variants, the product suffered “nondeterminism” — that is, when asked the same question multiple times in a short period, it gave different results.

Aronson is excited about the potential for large language models to summarize knowledge for overburdened genetic counselors, but “the technology needs to improve.”

If metrics and standards are sparse and errors can crop up for strange reasons, what are institutions to do? Invest lots of resources. At Stanford, Shah said, it took eight to 10 months and 115 man-hours just to audit two models for fairness and reliability.

Experts interviewed by KFF Health News floated the idea of artificial intelligence monitoring artificial intelligence, with some (human) data whiz monitoring both. All acknowledged that would require organizations to spend even more money — a tough ask given the realities of hospital budgets and the limited supply of AI tech specialists.

“It’s great to have a vision where we’re melting icebergs in order to have a model monitoring their model,” Shah said. “But is that really what I wanted? How many more people are we going to need?”

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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KFF Health News Midwest correspondent Cara Anthony and Emily Kwong, host of NPR’s podcast “Shortwave,” talk about Black families living in the aftermath of lynchings and police killings in their communities. Anthony shares her southeastern Missouri-based reporting from “Silence in Sikeston,” a documentary film, podcast, and print reporting project. She discusses the latest research on the health effects of racism and violence, including the emerging, controversial field of epigenetics.

Hear the full podcast episodes Anthony and Kwong reference from “Silence in Sikeston” here. They discuss material from Episode 1, “Racism Can Make You Sick”; Episode 2, “Hush, Fix Your Face”; and Episode 3, “Trauma Lives in the Body.”

In 1942, Mable Cook was a teenager. She was standing on her front porch when she witnessed the lynching of Cleo Wright.

In the aftermath, Cook received advice from her father that was intended to keep her safe.

“He didn’t want us talking about it,” Cook said. “He told us to forget it.”

More than 80 years later, residents of Sikeston, Missouri, still find it difficult to talk about the lynching.

Conversations with Cook, who was one of the few remaining witnesses of the lynching, launch a discussion of the health consequences of racism and violence in the United States. Racial equity scholar Keisha Bentley-Edwards explains the physical, mental, and emotional burdens on Sikeston residents and Black Americans in general.

“Oftentimes, people who experience racial trauma are forced to not acknowledge it,” Bentley-Edwards said. “They’re forced to question whether or not it happened in the first place.”

When Anthony uncovered details of a police killing in her own family while reporting this project, she unpacked her family’s story with Aiesha Lee, a licensed professional counselor and an assistant professor at Penn State.

“This pain has compounded over generations,” Lee said. “We’re going to have to deconstruct it or heal it over generations.”

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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SACRAMENTO — Six years after he entered office vowing to be California’s “health care governor,” Democrat Gavin Newsom has steered tens of billions in public funding to safety net services for the state’s neediest residents while engineering rules to make health care more accessible and affordable for all Californians.

More than a million California residents living in the U.S. without authorization now qualify for Medi-Cal, the state’s version of Medicaid, making California among the first states to cover low-income people regardless of their immigration status. The state is experimenting with Medicaid money to pay for social services such as housing and food assistance, especially for those living on the streets or with chronic diseases. And the state is forcing the health care industry to rein in soaring costs while imposing new rules on doctors, hospitals, and insurers to provide better-quality, more accessible care.

However, Newsom has so far failed to fully deliver on his most sweeping health care policies — and many changes are not yet visible to the public: Health care costs continue to rise, homelessness is worsening, and many Californians still struggle to get basic medical care.

Now, some of Newsom’s signature health initiatives, which could shape his profile on the national stage, are in peril as Donald Trump returns to the White House. According to national health policy experts, California stands to lose billions of dollars in health care funding should the Trump administration alter Medicaid programs as Republicans have indicated is likely. Such a move could force the state to dramatically slash benefits or eligibility.

And although allowing immigrants without legal status to enroll in free health care has been funded almost entirely with state money, it makes California a political target.

“That is fuel to feed the Republican MAGA argument that we are taking tax dollars from good Americans and providing health care to immigrants,” said Mark Peterson, a health care expert at UCLA, referring to the “Make America Great Again” movement.

Newsom declined an interview with KFF Health News. In a statement, he acknowledged that many of his initiatives are works in progress. But although he will attempt to work with Trump, the governor vowed to protect his health care agenda in his final two years in office.

“We are approaching the incoming administration with an open hand, not a closed fist,” Newsom said. “It is a top priority of my administration to ensure that quality health care is available and affordable for all Californians.”

Mark Ghaly, a former Health and Human Services secretary under Newsom, said transforming the way health care is paid for and delivered can be bumpy. “We didn’t do it perfectly,” Ghaly said. “Implementation is always messy in a state of 40 million people.”

Ahead of Trump’s Jan. 20 inauguration, Newsom has proposed allocating $25 million to challenge Trump on reproductive health care, disaster relief, and other services. His request is pending in the state’s Democratic-controlled legislature.

Here are the major initiatives that will shape Newsom’s health care legacy:

Medicaid

Potential federal cuts loom large in America’s most populous state. Of the whopping $261 billion California spends annually on health care and social services, nearly $116 billion flows from the federal government. Most of that goes to Medicaid, which covers more than 1 in 3 Californians. GOP leaders in Washington have floated ideas to kneecap Medicaid, which could slash benefits or cut enrollment.

In addition, California’s expansion of Medi-Cal to 1.5 million immigrants without legal status is projected to cost the state roughly $6.4 billion for the fiscal year ending June 30. Newsom suggested in early December that the state would continue to fund the immigrant health care expansion in the upcoming budget year but declined to say whether he would preserve the coverage in future years.

Advocacy groups are readying to defend those benefits should Trump target California over the issue. “We want to continue to protect access to care and not see a rollback,” said Amanda McAllister-Wallner, interim executive director of Health Access California.

Generic Drugs

Citing the high cost of prescription drugs, Newsom in 2022 plowed $100 million into his plan to produce generic insulin for California and launch a state manufacturing plant to produce a range of generic drugs. Three years later, California has done neither. Newsom did, however, announce a deal in April to purchase in bulk the opioid reversal drug naloxone, which the state made available to schools, health clinics, and other institutions at a discount.

“It’s certainly disappointing that there isn’t much more progress on it,” said former state Sen. Richard Pan, who authored the original generic drug legislation.

On generic insulin, Newsom acknowledged “that it’s taken longer than we hoped to get insulin on the market, but we remain committed to delivering $30 insulin available to all who need it as soon as we can.”

Abortion

The governor helped lead the successful 2022 campaign to enshrine access to abortion in the state constitution. He signed laws to ensure abortions and miscarriages are not criminalized and to allow out-of-state doctors to perform abortions in California; built a stockpile of abortion medication when mifepristone faced a national ban; and set aside $20 million to help Californians who can’t afford abortion care to access it.

Newsom, who has made reproductive rights a central tenet of his political agenda, also funded ads and traversed the country attacking Trump and other Republicans in red states who have rolled back abortion access.

After Trump won the election, Newsom called a special legislative session to ready for potential legal battles with the federal government. He told KFF Health News the state is preparing “in every possible way to protect the rights guaranteed in California’s Constitution and ensure bodily autonomy for all those in our state.”

Rising Health Care Costs

In 2022, Newsom created the Office of Health Care Affordability to set limits on health care spending and impose penalties on industry payers and providers that fail to meet targets. By 2029, California will cap annual price increases for health insurers, doctors, and hospitals at 3%.

While Trump has voiced concern about the steady rise of health care costs nationally — and the quality of health care Americans are receiving — his ideas have focused on deregulation and replacing the Affordable Care Act, which experts say could cost millions their health coverage and increase patient health care spending. California could potentially lose federal subsidies that have helped offset insurance premiums for most of the roughly 1.8 million people who buy their health coverage from Covered California, the state’s ACA marketplace, which would increase patient out-of-pocket costs.

The state could use money it raises from its own health insurance penalty on the uninsured, which Newsom adopted after the Obamacare individual mandate was zeroed out by Congress in 2017. Those state revenues are projected to be $298 million this fiscal year, according to the state Department of Finance. That’s a fraction of the federal health insurance subsidies California receives — roughly $1.7 billion annually.

Health and Homelessness

Under Newsom, California has spent unprecedented public money on tackling homelessness, yet the crisis has worsened under his watch.

From 2019, when Newsom took office, to 2023, homelessness jumped 20% to more than 181,000, despite his funneling more than $20 billion into trying to get people off the streets, including converting hotels and motels into homeless housing. He has also plowed roughly $12 billion into CalAIM, an experimental effort to infuse Medi-Cal with social services, including rental and eviction assistance.

A state audit last year found the state isn’t doing a good job of tracking the effectiveness of taxpayer money. CalAIM isn’t serving as many Californians as expected and patients face difficulty receiving new benefits from health insurers.

“The homelessness crisis on our streets is unacceptable,” Newsom acknowledged. “But we are starting to see progress.”

Experts expect the Trump administration to reverse liberal policies that have allowed Medicaid money to be used for health care experiments through waivers encouraged by the Biden administration. Notably, Trump has attacked Newsom for his handling of the homelessness crisis and has vowed to more forcefully move people off the streets. California’s CalAIM waiver ends at the end of 2026.

Instead of expanding housing and food assistance, for instance, the state could instead see federal moves to end CalAIM benefits and make Medicaid more restrictive.

Mental Health and Substance Use

Newsom has launched the most extensive overhaul of California’s behavioral health system in decades, directing billions in state funding toward a new network of treatment facilities and prevention programs.

Two of his most controversial signature initiatives, Proposition 1 and CARE Court, infuse money into treatment and housing for Californians with behavioral health conditions, especially homeless people living in crisis. And CARE Court allows judges to compel treatment for those suffering from debilitating mental illness and substance use.

Both have been hamstrung by funding challenges, rely on counties for implementation, and could take years to produce noticeable results. Whereas Newsom has sought to expand community-based treatment, Trump has promised a return to institutionalization and suggested homeless people and those with severe behavioral health conditions be moved to “large parcels of inexpensive land.”

Newsom said he hopes his “innovative” approaches will transform behavioral health care with “a laser focus on people with the most serious illness and substance use disorders.”

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When Michael Adams was researching health insurance options in 2023, he had one very specific requirement: coverage for prosthetic limbs.

Adams, 51, lost his right leg to cancer 40 years ago, and he has worn out more legs than he can count. He picked a gold plan on the Colorado health insurance marketplace that covered prosthetics, including microprocessor-controlled knees like the one he has used for many years. That function adds stability and helps prevent falls.

But when his leg needed replacing last January after about five years of everyday use, his new marketplace health plan wouldn’t authorize it. The roughly $50,000 leg with the electronically controlled knee wasn’t medically necessary, the insurer said, even though Colorado law leaves that determination up to the patient’s doctor, and his has prescribed a version of that leg for many years, starting when he had employer-sponsored coverage.

“The electronic prosthetic knee is life-changing,” said Adams, who lives in Lafayette, Colorado, with his wife and two kids. Without it, “it would be like going back to having a wooden leg like I did when I was a kid.” The microprocessor in the knee responds to different surfaces and inclines, stiffening up if it detects movement that indicates its user is falling.

People who need surgery to replace a joint typically don’t encounter similar coverage roadblocks. In 2021, 1.5 million knee or hip joint replacements were performed in United States hospitals and hospital-owned ambulatory facilities, according to the federal Agency for Healthcare Research and Quality, or AHRQ. The median price for a total hip or knee replacement without complications at top orthopedic hospitals was just over $68,000 in 2020, according to one analysis, though health plans often negotiate lower rates.

To people in the amputee community, the coverage disparity amounts to discrimination.

“Insurance covers a knee replacement if it’s covered with skin, but if it’s covered with plastic, it’s not going to cover it,” said Jeffrey Cain, a family physician and former chair of the board of the Amputee Coalition, an advocacy group. Cain wears two prosthetic legs, having lost his after an airplane accident nearly 30 years ago.

AHIP, a trade group for health plans, said health plans generally provide coverage when the prosthetic is determined to be medically necessary, such as to replace a body part or function for walking and day-to-day activity.In practice, though, prosthetic coverage by private health plans varies tremendously, said Ashlie White, chief strategy and programs officer at the Amputee Coalition. Even though coverage for basic prostheses may be included in a plan, “often insurance companies will put caps on the devices and restrictions on the types of devices approved,” White said.

An estimated 2.3 million people are living with limb loss in the U.S., according to an analysis by Avalere, a health care consulting company. That number is expected to as much as double in coming years as people age and a growing number lose limbs to diabetes, trauma, and other medical problems.

Fewer than half of people with limb loss have been prescribed a prosthesis, according to a report by the AHRQ. Plans may deny coverage for prosthetic limbs by claiming they aren’t medically necessary or are experimental devices, even though microprocessor-controlled knees like Adams’ have been in use for decades.

Cain was instrumental in getting passed a 2000 Colorado law that requires insurers to cover prosthetic arms and legs at parity with Medicare, which requires coverage with a 20% coinsurance payment. Since that measure was enacted, about half of states have passed “insurance fairness” laws that require prosthetic coverage on par with other covered medical services in a plan or laws that require coverage of prostheses that enable people to do sports. But these laws apply only to plans regulated by the state. Over half of people with private coverage are in plans not governed by state law.

The Medicare program’s 80% coverage of prosthetic limbs mirrors its coverage for other services. Still, an October report by the Government Accountability Office found that only 30% of beneficiaries who lost a limb in 2016 received a prosthesis in the following three years.

Cost is a factor for many people.

“No matter your coverage, most people have to pay something on that device,” White said. As a result, “many people will be on a payment plan for their device,” she said. Some may take out loans.

The federal Consumer Financial Protection Bureau has proposed a rule that would prohibit lenders from repossessing medical devices such as wheelchairs and prosthetic limbs if people can’t repay their loans.

“It is a replacement limb,” said White, whose organization has heard of several cases in which lenders have repossessed wheelchairs or prostheses. Repossession is “literally a punishment to the individual.”

Adams ultimately owed a coinsurance payment of about $4,000 for his new leg, which reflected his portion of the insurer’s negotiated rate for the knee and foot portion of the leg but did not include the costly part that fits around his stump, which didn’t need replacing. The insurer approved the prosthetic leg on appeal, claiming it had made an administrative error, Adams said.

“We’re fortunate that we’re able to afford that 20%,” said Adams, who is a self-employed leadership consultant.

Leah Kaplan doesn’t have that financial flexibility. Born without a left hand, she did not have a prosthetic limb until a few years ago.

Growing up, “I didn’t want more reasons to be stared at,” said Kaplan, 32, of her decision not to use a prosthesis. A few years ago, the cycling enthusiast got a prosthetic hand specially designed for use with her bike. That device was covered under the health plan she has through her county government job in Spokane, Washington, helping developmentally disabled people transition from school to work.

But when she tried to get approval for a prosthetic hand to use for everyday activities, her health plan turned her down. The myoelectric hand she requested would respond to electrical impulses in her arm that would move the hand to perform certain actions. Without insurance coverage, the hand would cost her just over $46,000, which she said she can’t afford.

Working with her doctor, she has appealed the decision to her insurer and been denied three times. Kaplan said she’s still not sure exactly what the rationale is, except that the insurer has questioned the medical necessity of the prosthetic hand. The next step is to file an appeal with an independent review organization certified by the state insurance commissioner’s office.

A prosthetic hand is not a luxury device, Kaplan said. The prosthetic clinic has ordered the hand and made the customized socket that will fit around the end of her arm. But until insurance coverage is sorted out, she can’t use it.

At this point she feels defeated. “I’ve been waiting for this for so long,” Kaplan said.

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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SACRAMENTO, California.— Seis años después de asumir el cargo prometiendo ser el “gobernador de la salud” de California, el demócrata Gavin Newsom ha destinado decenas de miles de millones de dólares de fondos públicos a servicios de la red de seguridad para los residentes más necesitados del estado, mientras diseña reglas para hacer que la atención médica sea más accesible y asequible para todos los californianos.

Más de un millón de residentes de California que viven en Estados Unidos sin papeles ahora califican para Medi-Cal, la versión estatal de Medicaid: ha sido uno de los primeros en cubrir a personas de bajos ingresos independientemente de su estatus migratorio.

El estado también está experimentando con fondos de Medicaid para pagar servicios sociales como asistencia para vivienda y alimentos, especialmente para aquellos que viven en las calles o tienen enfermedades crónicas. Además, está obligando a la industria de la salud a controlar los costos desbordantes mientras impone nuevas reglas a médicos, hospitales y aseguradoras para ofrecer una atención de mejor calidad y más accesible.

Sin embargo, hasta ahora, Newsom no ha logrado cumplir por completo con sus políticas de salud más ambiciosas, y muchos cambios aún no son visibles para el público: los costos de la salud siguen aumentando, la escasez de vivienda está empeorando y muchos californianos todavía luchan por obtener atención médica básica.

Ahora, algunas de las iniciativas emblemáticas de Newsom en materia de salud, que podrían definir su perfil en el escenario nacional, están en peligro con el regreso de Donald Trump a la Casa Blanca.

Según expertos en políticas sanitarias, California podría perder miles de millones de dólares en financiamiento para la atención médica si la nueva administración Trump altera los programas de Medicaid, algo que los republicanos han dicho que es probable. Tal movimiento podría obligar al estado a recortar drásticamente beneficios, e incluso la elegibilidad.

Y aunque la inscripción para que inmigrantes indocumentados obtengan atención médica gratuita se ha financiado casi completamente con dinero estatal, esto convierte a California en un blanco político.

“Eso es combustible para alimentar el argumento de la republicana MAGA de que estamos tomando dólares de impuestos de buenos estadounidenses y proporcionando atención médica a los inmigrantes”, dijo Mark Peterson, experto en atención médica de UCLA, en referencia al movimiento “Make America Great Again”.

Newsom rechazó una entrevista con KFF Health News. En un comunicado, reconoció que muchas de sus iniciativas todavía están en proceso de implementarse. Pero, aunque intentará trabajar con Trump, el gobernador prometió proteger su agenda de atención médica en sus dos últimos años en el cargo.

“Nos estamos acercando a la administración entrante con una mano abierta, no con un puño cerrado”, dijo Newsom. “Es una prioridad principal de mi administración asegurar que la atención médica de calidad esté disponible y sea asequible para todos los californianos”.

Mark Ghaly, ex secretario de Salud y Servicios Humanos bajo Newsom, dijo que transformar la forma en que se paga y ofrece la atención médica puede ser complicado. “No lo hicimos perfectamente”, dijo Ghaly. “La implementación siempre es complicada en un estado de 40 millones de personas”.

Antes de la inauguración de Trump el 20 de enero, Newsom ha propuesto asignar $25 millones para desafiar a Trump en atención reproductiva, ayuda por desastres y otros servicios. Su solicitud está pendiente en la Legislatura estatal controlada por demócratas.

Estas son las principales iniciativas que conformarán el legado de Newsom en salud:

Medicaid

Se avecinan posibles recortes federales en el estado más poblado de Estados Unidos. De los asombrosos $261 mil millones que California gasta anualmente en atención médica y servicios sociales, casi $116 mil millones provienen del gobierno federal. La mayor parte de eso va a Medicaid, que cubre a más de 1 de cada tres californianos. Líderes republicanos en Washington han planteado ideas para debilitar el programa, lo que podría reducir beneficios o disminuir la inscripción.

Además, la expansión de Medi-Cal en California para 1.5 millones de inmigrantes sin papeles se proyecta que costará al estado aproximadamente $6.4 mil millones para el año fiscal que termina el 30 de junio.

A principios de dciembre, Newsom sugirió que el estado continuaría financiando la expansión de atención médica para inmigrantes en el próximo año fiscal, pero no quiso decir si mantendría la cobertura en años futuros.

Grupos de defensa están listos para proteger esos beneficios si Trump hace de California su blanco. “Queremos continuar protegiendo el acceso a la atención y no ver un retroceso”, dijo Amanda McAllister-Wallner, directora ejecutiva interina de Health Access California.

Medicamentos genéricos

Citando el alto costo de los medicamentos recetados, en 2022 Newsom destinó $100 millones a su plan para producir insulina genérica para California y lanzar una planta estatal de fabricación para producir una gama de medicamentos genéricos.

Tres años después, California no ha logrado ninguno de los dos. Sin embargo, en abril Newsom anunció un acuerdo para comprar al por mayor naloxone, el medicamento para revertir las sobredosis de opioides, que el estado puso a disposición de escuelas, clínicas de salud y otras instituciones a un precio reducido.

“Es ciertamente decepcionante que no haya mucho más progreso”, dijo el ex senador estatal Richard Pan, quien redactó la legislación original de medicamentos genéricos.

Sobre la insulina genérica, Newsom reconoció “que ha tomado más tiempo del que esperábamos llevar insulina al mercado, pero seguimos comprometidos a ofrecer insulina a $30 disponible para todos los que la necesiten lo antes posible”.

Aborto

El gobernador ayudó a liderar la exitosa campaña de 2022 para incluir el acceso al aborto en la constitución estatal. Firmó leyes para garantizar que los abortos, espontáneos o no, no fueran criminalizados, para permitir que médicos de otros estados realicen abortos en California, almacenar medicamentos abortivos cuando mifepristona enfrentó una prohibición nacional, y destinó $20 millones para ayudar a los californianos que no pueden pagar el cuidado del aborto.

Newsom, quien ha hecho de los derechos reproductivos un pilar central de su agenda política, también financió anuncios y recorrió el país atacando a Trump y a otros republicanos en estados conservadores que han restringido el acceso al aborto.

Después de la victoria electoral de Trump, Newsom convocó una sesión legislativa especial para prepararse para posibles batallas legales con el gobierno federal. Dijo a KFF Health News que el estado se está preparando “de todas las maneras posibles para proteger los derechos garantizados en la constitución de California y asegurar la autonomía para todos los que están en nuestro estado”.

Costos crecientes de la atención médica

En 2022, Newsom creó la Office of Health Care Affordability para establecer límites al gasto en salud e imponer sanciones a las aseguradoras y proveedores de atención médica que no cumplieran con los objetivos. Para 2029, California limitará los aumentos anuales de precios para aseguradoras, médicos y hospitales al 3%.

Si bien Trump ha expresado preocupación por el aumento constante de los costos de la atención médica a nivel nacional y la calidad de la atención, sus ideas se han centrado en la desregulación y en reemplazar la Ley de Cuidado de Salud a Bajo Precio (ACA), lo que, según los expertos, podría costar a millones su cobertura de salud y aumentar los gastos de los pacientes.

California podría perder subsidios federales que han ayudado a reducir las primas de seguros para la mayoría de los aproximadamente 1.8 millones de personas que compran su cobertura de salud a través de Covered California, el mercado estatal de la ACA, lo que aumentaría los gastos de bolsillo de los pacientes.

El estado podría usar el dinero que recauda de sus propias multas por no tener seguro de salud, adoptada por Newsom después que el Congreso eliminara el mandato individual de Obamacare en 2017. Según el Departamento de Finanzas del estado, esos ingresos estatales están proyectados en $298 millones para este año fiscal. Eso es una fracción de los aproximadamente $1.7 mil millones anuales en subsidios federales para seguros de salud que recibe California.

Salud y falta de vivienda

Bajo el liderazgo de Newsom, California ha gastado cantidades sin precedentes de dinero público para abordar la crisis de personas sin hogar, pero la situación ha empeorado bajo su mandato.

Desde 2019, cuando Newsom asumió el cargo, hasta 2023, la falta de vivienda aumentó un 20%: más de 181,000 personas no tienen techo, a pesar que el estado destinó más de $20 mil millones para tratar de sacar a las personas de las calles, incluido un programa para convertir hoteles y moteles en viviendas para los sin hogar.

Además, se han invertido aproximadamente $12 mil millones en CalAIM, un esfuerzo experimental para integrar servicios sociales en Medi-Cal, como asistencia para alquilar y para prevenir desalojos.

El año pasado, una auditoría estatal encontró que el estado no estaba haciendo un buen trabajo en el seguimiento de la efectividad del dinero de los contribuyentes. CalAIM no está sirviendo a tantos californianos como se esperaba, y los pacientes enfrentan dificultades para recibir los nuevos beneficios de los aseguradores de salud.

“La crisis de personas sin hogar en nuestras calles es inaceptable”, reconoció Newsom. “Pero estamos comenzando a ver avances”.

Se espera que la administración Trump revierta las políticas liberales que han permitido el uso de dinero de Medicaid para experimentos de atención médica a través de exenciones alentadas por la administración Biden.

Notablemente, Trump ha criticado a Newsom por su manejo de la crisis de personas sin hogar y ha prometido sacar a las personas de las calles con más fuerza. La exención de CalAIM en California termina a finales de 2026.

Por ejemplo,en lugar de expandir la asistencia de vivienda y alimentos, el estado podría enfrentarse a movimientos federales para terminar los beneficios de CalAIM y hacer que Medicaid sea más restrictivo.

Salud mental y adicciones

Newsom ha lanzado la reforma más extensa del sistema de salud conductual de California en décadas, destinando miles de millones en fondos estatales a una nueva red de instalaciones de tratamiento y programas de prevención.

Dos de sus iniciativas emblemáticas más controvertidas, la Proposición 1 y CARE Court, inyectan dinero en el tratamiento y la vivienda para californianos con afecciones de salud conductual, especialmente personas sin hogar que viven en crisis. CARE Court permite a los jueces ordenar tratamiento para quienes sufren enfermedades mentales debilitantes y trastornos por adicciones.

Ambas iniciativas han enfrentado desafíos de financiamiento, dependen de los condados para su implementación y podrían tardar años en producir resultados visibles.

Mientras que Newsom ha buscado expandir el tratamiento comunitario, Trump ha sugerido un regreso a la institucionalización y propuso trasladar a personas sin hogar y a aquellos con graves afecciones de salud conductual a “grandes extensiones de tierra económica”.

Newsom dijo que espera que sus enfoques “innovadores” transformen la atención de salud conductual con “un enfoque en las personas con enfermedades más graves y adicciones”.

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CHARLESTON, W.Va. — More than three years have passed since federal health officials arrived in central Appalachia to assess an alarming outbreak of HIV spread mostly between people who inject opioids or methamphetamine.

Infectious disease experts from the Centers for Disease Control and Prevention made a list of recommendations following their visit, including one to launch syringe service programs to stop the spread at its source. But those who’ve spent years striving to protect people who use drugs from overdose and illness say the situation likely hasn’t improved, in part because of politicians who contend that such programs encourage illegal drug use.

Joe Solomon is a Charleston City Council member and co-director of SOAR WV, a group that works to address the health needs of people who use drugs. He’s proud of how his close-knit community has risen to this challenge but frustrated with the restraints on its efforts.

“You see a city and a county willing to get to work at a scale that’s bigger than ever before,” Solomon said, “but we still have one hand tied behind our back.”

The hand he references is easier access to clean syringes.

In April 2021, the CDC came to Charleston — the seat of Kanawha County and the state capital, tucked into the confluence of the Kanawha and Elk rivers — to investigate dozens of newly detected HIV infections. The CDC’s HIV intervention chief called it “the most concerning HIV outbreak in the United States” and warned that the number of reported diagnoses could be just “the tip of the iceberg.”

Now, despite attention and resources directed toward the outbreak, researchers and health workers say HIV continues to spread. In large part, they say, the outbreak lingers because of restrictions state and local policymakers have placed on syringe exchange efforts.

Research indicates that syringe service programs are associated with an estimated 50% reduction in HIV and hepatitis C, and the CDC issued recommendations to steer a response to the outbreak that emphasized the need for improved access to those services.

That advice has thus far gone unheeded by local officials.

In late 2015, the Kanawha-Charleston Health Department launched a syringe service program but shuttered it in 2018 under pressure, with then-Mayor Danny Jones calling it a “mini-mall for junkies and drug dealers.”

SOAR stepped in, hosting health fairs at which it distributed naloxone, an opioid overdose reversal drug; offered treatment and referrals; provided HIV testing; and exchanged clean syringes for used ones.

But in April 2021, the state legislature passed a bill limiting the number of syringes people could exchange and made it mandatory to present a West Virginia ID. The Charleston City Council subsequently added guidelines of its own, including requiring individual labeling of syringes.

As a result of these restrictions, SOAR ceased exchanging syringes. West Virginia Health Right now operates an exchange program in the city under the restrictions.

Robin Pollini is a West Virginia University epidemiologist who conducts community-based research on injection drug use. “Anyone I’ve talked to who’s used that program only used it once,” she said. “And the numbers they report to the state bear that out.”

A syringe exchange run by the health department in nearby Cabell County — home to Huntington, the state’s largest city after Charleston — isn’t so constrained. As Solomon notes, that program exchanges more than 200 syringes for every one exchanged in Kanawha.

A common complaint about syringe programs is that they result in discarded syringes in public spaces. Jan Rader, director of Huntington’s Mayor’s Office of Public Health and Drug Control Policy, is regularly out on the streets and said she seldom encounters discarded syringes, pointing out that it’s necessary to exchange a used syringe for a new one.

In August 2023, the Charleston City Council voted down a proposal from the Women’s Health Center of West Virginia to operate a syringe exchange in the city’s West Side community, with opponents expressing fears of an increase in drug use and crime.

Pollini said it’s difficult to estimate the number of people in West Virginia with HIV because there’s no coordinated strategy for testing; all efforts are localized.

“You would think that in a state that had the worst HIV outbreak in the country,” she said, “by this time we would have a statewide testing strategy.”

In addition to the testing SOAR conducted in 2021 at its health fairs, there was extensive testing during the CDC’s investigation. Since then, the reported number of HIV cases in Kanawha County has dropped, Pollini said, but it’s difficult to know if that’s the result of getting the problem under control or the result of limited testing in high-risk groups.

“My inclination is the latter,” she said, “because never in history has there been an outbreak of injection-related HIV among people who use drugs that was solved without expanding syringe services programs.”

“If you go out and look for infections,” Pollini said, “you will find them.”

Solomon and Pollini praised the ongoing outreach efforts — through riverside encampments, in abandoned houses, down county roads — of the Ryan White HIV/AIDS Program to test those at highest risk: people known to be injecting drugs.

“It’s miracle-level work,” Solomon said.

But Christine Teague, Ryan White Program director at the Charleston Area Medical Center, acknowledged it hasn’t been enough. In addition to HIV, her concerns include the high incidence of hepatitis C and endocarditis, a life-threatening inflammation of the lining of the heart’s chambers and valves, and the cost of hospital resources needed to address them.

“We’ve presented that data to the legislature,” she said, “that it’s not just HIV, it’s all these other lengthy hospital admissions that, essentially, Medicaid is paying for. And nothing seems to penetrate.”

Frank Annie is a researcher at CAMC specializing in cardiovascular diseases, a member of the Charleston City Council, and a proponent of syringe service programs. Research he co-authored found 462 cases of endocarditis in southern West Virginia associated with injection drug use, at a cost to federal, state, and private insurers of more than $17 million, of which less than $4 million was recovered.

Teague is further concerned for West Virginia’s rural counties, most of which don’t have a syringe service program.

Tasha Withrow, a harm reduction advocate in bordering rural Putnam County, said her sense is that HIV numbers aren’t alarmingly high there but said that, with little testing and heightened stigma in a rural community, it’s difficult to know.

In a January 2022 follow-up report, the CDC recommended increasing access to harm reduction services such as syringe service programs through expansion of mobile services, street outreach, and telehealth, using “patient-trusted” individuals, to improve the delivery of essential services to people who use drugs.

Teague would like every rural county to have a mobile unit, like the one operated by her organization, offering harm reduction supplies, medication, behavioral health care, counseling, referrals, and more. That’s an expensive undertaking. She suggested opioid settlement money through the West Virginia First Foundation could pay for it.

Pollini said she hopes state and local officials allow the experts to do their jobs.

“I would like to see them allow us to follow the science and operate these programs the way they’re supposed to be run, and in a broader geography,” she said. “Which means that it shouldn’t be a political decision; it should be a public health decision.”

This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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This week, KFF Health News’ “What the Health?” presents a conversation with Francis Collins, former National Institutes of Health director and White House science adviser.

Collins, the longest-serving presidentially appointed head of the nation’s crown jewel of biomedical research, spoke last month with KFF Health News’ chief Washington correspondent, Julie Rovner. He has a new book out, called “The Road to Wisdom: On Truth, Science, Faith, and Trust.”

In this interview, Collins discusses what may lie ahead for NIH in the coming Trump administration; how he and other science leaders failed to communicate to the public during the covid-19 pandemic; and his work with the group Braver Angels, which aims to facilitate conversations among people who disagree on policy issues.

Click to open the transcript

Transcript: Francis Collins on Supporting NIH and Finding Common Ground

[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, happy new year, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent at KFF Health News. Usually I’m joined by some of the best and smartest health reporters in Washington, but today we have a special holiday episode for you. Last month, I got the chance to chat with Francis Collins, former director of the National Institutes of Health, about a variety of subjects. Regular podcast listeners will know we used some of the excerpts of that discussion a couple of weeks ago, but today we’re bringing you the entire interview. I hope you enjoy it, and we’ll be back with all the news starting next week. So, here we go. 

I am so pleased to welcome to the podcast Dr. Francis Collins, former director of the National Institutes of Health, and former White House science adviser and former director of the National Human Genome Institute, who led the effort to map the human genome. He also has a new book out this holiday season called “The Road to Wisdom: On Truth, Science, Faith, and Trust.” 

Dr. Collins, it’s so great to have you here. 

Francis Collins: Hey, Julie, it’s great to be with you. We go way back on a lot of interesting topics in health and medical research, and let’s get into it here. 

Rovner: I want to start with some very basics because we have lots of student listeners and people who know a lot about health policy but less about science. So what is the NIH, and how does it work? 

Collins: It is the largest supporter of biomedical research in the world. The National Institutes of Health, supported by the taxpayers with money that’s allocated every year by the Congress, is the main way in which, in the United States, we support basic medical research, trying to understand the details about how life works and how sometimes things go wrong and disease happens, and then carries those discoveries forward to what you might call the translational part, take those basic findings and try to see how could they actually improve human health in the clinic. And then working with industry, make sure if there’s an idea then for an intervention of some sort that it gets tested rigorously in clinical trials and, if it works, then it’s available to everybody. 

So when you look at what’s happened over the course of many decades in terms of advances in human health, like the fact that reductions in heart attacks and strokes have happened rather dramatically, the cancer death rates are falling every year, where does that come from? An awful lot of that is because of the NIH and the thousands and thousands of people who work on this area, supported by those dollars that come from NIH, both a little bit in our own location in Bethesda, Maryland, but most of the money goes out to all those universities and institutes across the country and some outside the country. 

Rovner: Yeah, I was going to say, I happen to live right up the street from the campus in Bethesda, but I know that that’s not where most of the money goes. It goes to the rest of the country. 

Collins: Right. Eighty-five percent of the dollars are given out to people who write grant applications with their best and brightest and boldest ideas, and they get sent and reviewed by peers who have scientific expertise to be able to assess what’s most likely to make real progress happen. And then, if you get the award, you have three to five years of funding to pursue that idea and see what you can learn. Unfortunately, even though the budget for NIH has been reasonably well treated, especially in the last, oh, eight or nine years, it’s still the case that most applications that come into NIH get rejected. Only about 20% of them can be actually paid for with the current budget we have. So, sad to say, a lot of good ideas are left on the table. 

Rovner: And yet, for more than three decades now, the NIH has been kind of a bipartisan darling with strong financial support from Democrats and Republicans in both the White House and in Congress. Now we have an administration coming in that’s calling for some big changes. Could NIH honestly use some reimagining? It’s been a while. 

Collins: Oh, sure. I mean, I was privileged to be the NIH director for 12 years. I did some reimagining myself in that space. One of the first things I did when I got started was to create a whole new part of NIH called NCATS, the National Center for Advancing Translational Science, because it seemed that some of these really exciting basic science discoveries just sort of landed with a thud instead of moving forward into clinical applications. NCATS has done a lot to try to change that. So yeah, there’s always been this sense of this is the crown jewel of the federal government, but it could even be better. So let’s try to work on that. 

I hope that’s what’s going to happen in this next iteration — find things to fix. If it’s more an idea of let’s just blow the whole thing up and start over, then I’m opposed, because I think the rest of the world just has this great admiration for NIH. Many of them would say this is the most amazing engine for medical discovery that the world has ever known. Let’s certainly optimize it if we need to. But my goodness, the track record is phenomenal. And the track record is both about advances in health and it’s also about economic growth, which people are rightly concerned about as well. Every dollar that NIH gives out in a grant returns $8.38 in that return on investment to the economy within a few years. So if you wanted to just say, “Well, let’s just try to grow the economy,” and didn’t even care about health, NIH would still be one of your best bets. 

Rovner: So one of the things that Robert F. Kennedy Jr., who’s [President-elect Donald] Trump’s pick to lead HHS [the Department of Health and Human Services], has talked about is taking a break from the federal government researching infectious diseases and concentrating on chronic diseases instead. Do you think that’s a good idea for the NIH? 

Collins: Well, NIH does a lot on chronic diseases. Let’s be clear about that. Infectious disease has certainly gotten a lot of attention because of covid and the controversies around that. Although, let me also step back and say what was done during covid, the development of a vaccine in 11 months that is estimated to have saved 3.2 million lives in the U.S. alone, is one of the most amazing scientific achievements ever and shouldn’t be somehow pushed aside as if that wasn’t a big deal. That was a huge deal. But infectious diseases are still out there, and with everything that we see now with things like H5N1, there’s a lot of work that needs to be done. 

Sure, chronic diseases deserve a lot of attention, but let’s look at what’s happening there with cancer, with Alzheimer’s disease, with diabetes, with heart disease. Those are huge current investments at NIH. Could we look at them closely and ask are they being absolutely optimally spent? That’s always an appropriate question to ask, but it’s not as if this has been sort of ignored. 

Look at the project that I had something to do with starting called All of Us, which is an effort to look at all kinds of illnesses in a million people, a very diverse group, and figure out how not to just do a better job of treating chronic disease but how to prevent it. That’s an incredibly powerful resource that’s now beginning to build a lot of momentum, and there’s a place where maybe even a little bit more attention to All of Us could be helpful, because we could go faster. 

Rovner: So it’s not just either/or? 

Collins: No, it shouldn’t be either/or. And, I mean, look around your own family and the people you care about. What are the diseases that still need answers? There’s plenty of them, and they’re not all in one category or another. This is what NIH has always been charged to do. Look across the entire landscape, rare diseases as well as common diseases, infectious diseases, as well as things that are maybe caused by environment or diet. All of that has to be the purview, otherwise we’re not really serving all the people. 

Rovner: So, you’re unique in many ways, but a big one is that you’ve managed to simultaneously be a person of faith and a person of science. So often those things are at odds. Why is that so difficult for so many people? You don’t seem to have a lot of trouble with it. 

Collins: I don’t, but there’s a long history here. Maybe it helps me that I did not grow up as a person of faith. I was an atheist when I was in graduate school studying quantum mechanics, and then I went to medical school and discovered that my answers to really important questions like What’s the meaning of life? were a bit thin. Atheism didn’t help me so much, and I really felt I had to do some work to explore that and, ultimately, over a couple of years of that work, came to the conclusion that for me, both in terms of the rational arguments and also the sort of spiritual calling, that I felt that I couldn’t be an atheist anymore, and I became a Christian. 

Everybody predicted around me that my head would explode because this was going to be incompatible with my scientific loves, one of which was genetics, but it never happened. I think we have a lot of preconceived ideas about what has to be the perspective of faith or the perspective of science. When you look more closely, there’s actually more room there to figure out how these two ways of finding truth, ways of knowing, can actually inform each other. And for me, being able to have all of the questions on the table, not just the science questions or not just the faith questions but all of them that you can think through on a given Thursday, feels like a good thing, and it’s incredibly enriching. But I am sorry that not everybody sees it that way. 

Anybody listening to this that wants to look at a good dialogue about this that’s going on quite vigorously, go to the website BioLogos, B-I-O-L-O-G-O-S. A couple million people there are engaged in deep and very civil discussions about how science and faith can speak to each other in useful ways. 

Rovner: Well, that’s kind of a perfect segue because one of the things you write about in your new book is how we’ve become a society that’s distrustful, not just of science but of all expertise. How can the scientific community start to rebuild that trust that we used to have? 

Collins: Well, let’s be clear, trust in everything has been deteriorating. Institutions across the board have lost trust by various surveys that Gallup does, and that’s part of, I think, a reflection of society kind of falling into this place of skepticism and even cynicism and a likelihood to assume that anything that sounds like expertise might also be elitist and might not be good for me. This is a dangerous place to be. Society has to have institutions that are reliable and dependable and kind of create a “constitution of knowledge” that Jonathan Rauch writes about. But right now, all of that seems a bit in jeopardy. And science is just one of those sources of truth that now some people are questioning. But can I trust what science has said about something? Well, we all have to, I think, learn our own skill set, again, about how to assess information and the sources of it and whether it should be trusted. And we should not be using where we currently live, in a particular bubble, as a means of deciding whether to accept a claim or not, because there’s a lot of stuff happening in bubbles that isn’t true. 

So part of it is our own need to come back to that kind of filtering. But for scientists, I think we are very much in the space now of having to be more in the world, in the arena, and willing to listen to objections and not get defensive and come back again with thoughtful, winsome explanations about how science works and how science is self-correcting. And even though sometimes science makes mistakes, they won’t be mistakes for very long, because somebody will come along and figure out that wasn’t right and it’ll get corrected. That should be very reassuring. But oftentimes today, that information is less well understood. Maybe part of what happened during covid is that much of the science information seemed to be coming down from elitist voices like me that weren’t as close to the community as people would’ve wanted to see and maybe would’ve had more trust in. So we’ve got to diversify the sources of science communication and not have it be so much focused in just a few places. 

Rovner: Do scientists need to be more humble, if you will? I mean, more honest about there’s a lot of things we don’t know, and we’re getting new information every day, and that might change what we say? I feel like there wasn’t maybe enough of that during covid. 

Collins: I totally agree, and I talk about that in the book. I wish those times when I was shoved in front of a camera during 2020 and ’21 and asked “OK, what should the public do today to protect themselves?” that I would’ve started the answer with: “Well, there’s a lot we don’t know yet, but let me tell you the best we can do with the information we have. But don’t be surprised if a week or a month from now that information changes. This is how science works, and we’re in the process of learning about this diabolical virus, and we don’t have all the data yet.” I wish we’d said that more often. Yeah, I think all sources, if you want to be regarded as reliable, you need to have integrity. You’ve got to be honest. You’ve got to have competence. You have to have done the work. And, I’m sorry, a lot of what’s on social media does not meet that standard. 

Rovner: No, I think— 

Collins: And then you’ve got to have — and humility. Like you said, humility. I think anybody who’s basically saying, “Well, I know something about this area, so now I know something about everything” — celebrities, listen up here — that is probably not the kind of source that you want to necessarily attach yourself to. But it happens a lot. So integrity, competence, humility, use those as your standards for deciding whether to trust a particular source or an institution. 

Rovner: I know you’re active in a group called Braver Angels, which you’ve described as marriage counseling for our country, which clearly we need. 

Collins: We do. 

Rovner: Can you tell us a little bit about that? 

Collins: So, they got started eight years ago with increasing sense of the polarization, the divisiveness, and, “Wait a minute. This isn’t what we want to be. How do we bring people back together?” And they create an environment where people on opposite sides of an issue — maybe it’s gun control or immigration or public health — have to actually get together and listen to each other, for starters. No, and you’re not allowed to start shouting. You have to listen carefully to what the opposite side says about their view on this well enough that you can speak it back to them and say, “Here’s what I heard you say,” and have them say, “Yeah, that’s what I said.” We don’t do that very well. 

Right now, in those circumstances, it’s more like: “OK, they just said this. Let me plan what I’m going to say back to prove them wrong.” And you have this snappy response back and forth, and nobody actually changes their view at all. Having done a lot of these sessions with Braver Angels, I’ve learned things that I didn’t know before about how people, for instance, who felt the covid response was ham-handed in their particular local environment. Yeah, I can kind of see how it was, and ideally it would’ve been better if we’d had a more appropriate response that depended on community circumstances instead of trying to do one size fits all. Of course, it was all a crisis and we didn’t have much chance to do that, but they’ve got a point. If you’re in the heartland somewhere, all of the things that were decided, much of which seemed to be particularly relevant to the big cities, didn’t seem like it was a great fit for them. 

That’s an example of a kind of thing. And I’ve become friends with a lot of the people who initially I thought, “Well, I could never get along with that person,” but now I understand who they are. And we still disagree, and I still think they’re wrong about things and they think I’m wrong about things, but we can have that disagreement and not be disagreeable, and we can actually go to the bar afterwards and have a beer. It’s OK. We need a lot more of that. 

Rovner: Yes, we do. Well, you had a very long and decorated career. Is there one more big thing you hope to accomplish before you actually retire? I know you’re still busy in your lab. 

Collins: Busy in my lab, and I am still working on a project that I started when I was the president’s science adviser, which is an effort not to create a new solution to a disease but to get it implemented. And that is the disease called hepatitis C. And I continue to be the lead for the White House in trying to get a program underway that would find, test, treat, and cure as many of the 4 million Americans who are currently infected with this viral disease. We have a cure for this disease. It’s amazing — one pill a day, 12 weeks, 95% effective, no side effects. And yet, because many of the people who are infected are not in the best place — they might be on Medicaid, they might be uninsured, they might be in the criminal justice system, because a lot of this relates to intravenous drug use — they don’t have access. And they’re all trying to get back on their feet and they’re not going to get back on their feet if we don’t do something about this, and then end up with a terrible outcome of cirrhosis, liver cancer, and early death. 

I watched my brother-in-law die of this, and it is a horrible disease, and it’s totally preventable now. So we have a program, which I am totally confident if we can get it launched, maybe even in the next few weeks, this could save thousands and thousands of lives — and also, by the way, billions of dollars for health care that won’t be needed for all those transplants and liver cancer treatments because we’ll prevent them. 

So I am a bit obsessed about this. Maybe you’re sorry you asked if I had one more thing. This is the one more thing that I am totally devoted to getting into the end zone. 

Rovner: No, that’s super cool, and also, what a great example of something that medical research has done to help health care in the United States. 

Collins: Absolutely. We just have to do the implementation part. How hard can it be? 

Rovner: A good place to leave it for now. Dr. Francis Collins, thank you so much for joining us. I hope we can call on you again. 

Collins: Please do, Julie. It’s always great to talk to you. Thanks for everything you’re doing to spread the word about what we can do about health care. We can do a lot. 

Rovner: I hope so. Thank you. 

OK. That’s this week’s 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 again this week to our temporary producer, Taylor Cook, and our editor, Emmarie Huetteman. As always, you can email us your comments or questions. We’re at [email protected], or you can still find me at X, @jrovner, and increasingly at Bluesky, @julierovner.bsky.social. We’ll be back in your feed next week. Until then, be healthy. 

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This article was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. 

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