STAT+: Colon cancer prevention paradox: Higher-risk patients pay more for colonoscopy
Ashley Conway-Anderson was prepared for a lot of things when it came to her first colonoscopy. She sought out tips to make the daylong prep more bearable. She braced herself mentally for what the doctors would find; her mother, after all, was just a couple years out of recovery from colorectal cancer. When she awoke from the procedure, she said, things seemed relatively fine.
“Surprisingly fine,” said Conway-Anderson, a 36-year-old agroforestry professor at the University of Missouri. There was an 11-millimeter precancerous polyp that the doctors had discovered, but they’d snipped it out of her colon and recommended surveillance every three years. “Obviously, it’s big news to hear, but grateful this seems to be manageable. I’ll do it,” she said. “Then the bill came.”
She was being charged nearly $12,000 for the procedure after insurance. Conway-Anderson’s head spun. She couldn’t understand how it could cost so much, especially when she thought the colonoscopy was preventative for cancer and thus covered. “I was floored,” she said. “I was like I can’t pay this. I don’t know what you want me to do.”
1 year 4 months ago
Health, Special Report, Cancer, Insurance, policy, Public Health, STAT+
‘Everybody in This Community Has a Gun’: How Oakland Lost Its Grip on Gun Violence
OAKLAND, Calif. — The red-tipped bullet pierces skin and melts into it, Javier Velasquez Lopez explains. The green-tipped bullet penetrates armored vests. And the hollow-tipped bullet expands as it tears through bodies.
At 19, Velasquez Lopez knows a lot about ammunition because many of his friends own guns, he said. They carry to defend themselves in East Oakland, where metal bars protect shop windows and churches stand behind tall, chain-link fences.
Some people even hide AR-15-style assault weapons down their pants legs, he said.
“It doesn’t feel safe. Wherever you’re at, you’re always anxious,” said Velasquez Lopez, who dreams of leaving the city where he was born. “You’re always wondering what’s going to happen.”
Last year, two gunmen in ski masks stormed his high school, killing a school district carpenter and injuring five other adults, including two students.
Oakland won acclaim just a few years ago as a national model for gun violence prevention, in part by bringing police and community groups together to target the small number of people suspected of driving the gun violence.
Then, in 2020, the covid-19 pandemic shut down schools, businesses, and critical social services nationwide, leaving many low-income people isolated and desperate — facing the loss of their jobs, homes, or both. The same year, police murdered George Floyd, a Black man in Minneapolis, which released pent-up fury over racial discrimination by law enforcement, education, and other institutions — sparking nationwide protests and calls to cut police funding.
In the midst of this racial reckoning and facing the threats of an unknown and deadly virus, Americans bought even more guns, forcing some cities, such as Raleigh, North Carolina; Chicago; New York City; and Oakland, to confront a new wave of violent crime.
“There was emotional damage. There was physical damage,” said James Jackson, CEO of Alameda Health System, whose Wilma Chan Highland Hospital Campus, a regional trauma center in Oakland, treated 502 gunshot victims last year, compared with 283 in 2019. “And I think some of this violence that we’re seeing is a manifestation of the damage that people experienced.”
Jackson is among a growing chorus of health experts who describe gun violence as a public health crisis that disproportionately affects Black and Hispanic residents in poor neighborhoods, the very people who disproportionately struggle with Type 2 diabetes and other preventable health conditions. Covid further eviscerated these communities, Jackson added.
While the pandemic has retreated, gun violence has not. Oaklanders, many of whom take pride in the ethnic diversity of their city, are overwhelmingly upset about the rise in violent crime — the shootings, thefts, and other street crimes. At town halls, City Council meetings, and protests, a broad cross-section of residents say they no longer feel safe.
Programs that worked a few years ago don’t seem to be making a dent now. City leaders are spending millions to hire more police officers and fund dozens of community initiatives, such as placing violence prevention teams at high schools to steer kids away from guns and crime.
Yet gun ownership in America is at a historic high, even in California, which gun control advocates say has the strictest gun laws in the country. More than 1 million Californians bought a gun during the first year of the pandemic, according to the latest data from the state attorney general.
As Alameda County District Attorney Pamela Price told an audience at a September town hall in East Oakland: “We are in a unique, crazy time where everybody in this community has a gun.”
The Streets of Oakland
Oakland’s flatlands southeast of downtown are the backdrop of most of the city’s shootings and murders.
The area stands in stark contrast to the extreme wealth of the millionaire homes that dot the Oakland Hills and the immaculate, flower-lined streets of downtown. The city’s revived waterfront, named after famed author and local hero Jack London, draws tourists to trendy restaurants.
On a Saturday night in August, Shawn Upshaw drove through the flatlands along International Boulevard, past the prostitutes who gather on nearly every corner for at least a mile, and into “hot spots,” where someone is shot nearly every weekend, he said.
“When I grew up, women and kids would get a pass. They wouldn’t get caught in the crossfire,” said Upshaw, 52, who was born and raised in Oakland. “But now women and kids get it, too.”
Upshaw works as a violence interrupter for the city’s Department of Violence Prevention, which coordinates with the police department and community organizations in a program called Ceasefire.
When there’s a shooting, the police department alerts Upshaw on his phone and he heads to the scene. He doesn’t wear a police uniform. He’s a civilian in street clothes: jeans and a black zip-up jacket. It makes him more approachable, he said, and he’s not there to place blame, but rather to offer help and services to survivors and bystanders.
The goal, he said, is to stop a retaliatory shooting by a rival gang or grieving family member.
Police also use crime data to approach people with gang affiliations or long criminal records who are likely to use a gun in a crime — or be shot. Community groups follow up with offers of job training, education, meals, and more.
“We tell them they’re on our radar and try to get them to recognize there are alternatives to street violence,” said Oakland Police Department Capt. Trevelyon Jones, head of Ceasefire. “We give them a safe way of backing out of a conflict while maintaining their street honor.”
Every Thursday at police headquarters, officers convene a “shooting review.” They team up with representatives from community groups to make house calls to victims and their relatives.
After the program launched in 2012, Oakland’s homicides plummeted and were down 39% in 2019, according to a report commissioned by the Oakland Police Department.
Then covid hit.
“You had primary care that became an issue. You had housing that became an issue. You had employment that became an issue,” said Maury Nation, an associate professor at Vanderbilt University. “It created a surplus of the people who fit that highest risk group, and that overwhelms something like Ceasefire.”
With ever-rising housing prices in Oakland and across California, homeless encampments have multiplied on sidewalks and under freeway bypasses. The city is also bracing for the loss of jobs and civic pride if the Oakland Athletics baseball team relocates after April 2024, following departures by the NBA’s Golden State Warriors in 2019 and the NFL’s Raiders in 2020.
“Housing, food insecurity, not having jobs that pay wages for folks, all can lead to violence and mental health issues,” said Sabrina Valadez-Rios, who works at the Freedom Community Clinic in Oakland and teaches a high school class for students who have experienced gun violence. Her father was fatally shot outside their Oakland home when she was a child. “We need to teach kids how to deal with trauma. Violence is not going to stop in Oakland.”
Shared with permission from The Trace.
Homicides in Oakland climbed to 123 people in 2021, police reports show, dipping slightly to 120 last year. Police have tallied 108 homicides as of Nov. 12 this year. Neither the police department nor the city provided statistics on how many of those killings involved firearms, despite repeated requests from KFF Health News.
Experts also blame the rise in killings in Oakland and other American cities on the prevalence of gun ownership in the U.S., which has more guns than people. For all the pandemic disruption worldwide, homicide rates didn’t go up in countries with strict gun laws, said Thomas Abt, director of the Center for the Study and Practice of Violence Reduction at the University of Maryland.
“We saw gun violence, homicides, shootings spike up all around the country. And interestingly, it did not happen internationally,” Abt said. “The pandemic did not lead to more violence in other nations.”
Unrest in Oakland
Oakland residents are angry. One by one, business owners, community organizers, church leaders, and teenagers have stood at town halls and City Council meetings this year with an alarming message: They no longer feel safe anywhere in their city — at any time.
“It’s not just a small number of people in the evening or nighttime. This is all hours, day and night,” said Noha Aboelata, founder of the Roots Community Health Center in Oakland. “Someone’s over here pushing a stroller and someone’s getting shot right next to them.”
One morning in early April, automatic gunfire erupted outside a Roots clinic. Patients and staff members dropped to the ground and took cover. After the shooting stopped, medical assistants and a doctor gave first aid to a man in his 20s who had been shot six times.
Everyone is blaming someone or something else for the bloodshed.
Business owners have had enough. In September, Target announced it would close nine stores in four states, including in Oakland because of organized retail theft; the famed Vietnamese restaurant Le Cheval shut its doors after 38 years, partly blaming car break-ins and other criminal activity for depressing its business; and more than 200 business owners staged an hours-long strike to protest the rise in crime.
The leadership of the local NAACP, the nation’s oldest civil rights organization, made headlines this summer when it said Oakland was seeing a “heyday” for criminals, and pointed to the area’s “failed leadership” and “movement to defund the police.”
“It feels like there’s a dark cloud over Oakland,” said Cynthia Adams, head of the local chapter, which has called on the city to hire 250 more police officers.
Price, a progressive elected last year, already faces a recall effort, in part because she rejects blanket enhanced sentences for gangs and weapons charges, and has declined to charge youths as adults.
The new mayor, Sheng Thao, was criticized for firing the police chief for misconduct and breaking a campaign promise to double funding at the city’s Department of Violence Prevention. In her first State of the City address last month, Thao described the surge in crime as “totally and completely unacceptable,” and acknowledged that Oaklanders are hurting and scared. She said the city has expanded police foot patrols and funded six new police academies, as well as boosted funding for violence prevention and affordable housing.
“Not a day goes by where I don’t wish I could just wave a magic wand and silence the gunfire,” Thao said.
Many in the community, including Valadez-Rios, advocate for broader investment in Oakland’s poorest neighborhoods over more law enforcement.
City councils, states, and the federal government are putting their faith in violence prevention programs, in some cases bankrolling them from nontraditional sources, such as the state-federal Medicaid health insurance program for low-income people.
Last month, California’s Democratic Gov. Gavin Newsom approved an 11% state tax on guns and ammunition, and $75 million of the revenue annually is expected to go to violence prevention programs.
Although these programs are growing in popularity, it is unclear how successful they are. In some cases, proven programs that involve law enforcement, such as Ceasefire, were cut back or shelved after George Floyd was murdered, said Abt, the Maryland researcher.
“The intense opposition to law enforcement means that the city was unwilling to use a portion of the tools that have been proven,” Abt said. “It’s good to work on preventing youth violence, but the vast majority of serious violence is perpetrated by adults.”
Not a day goes by where I don’t wish I could just wave a magic wand and silence the gunfire.
Oakland Mayor Sheng Thao
A Focus on Schools
Kentrell Killens, interim chief at the Oakland Department of Violence Prevention, acknowledges that young adults drive Oakland’s gun violence, not high school kids. But, he said, shootings on the streets affect children. Of the 171 homicides in 2019 and 2020, 4% of victims were 17 or under, while 59% were ages 18 to 34, according to the Oakland Police Department.
The number of children injured in nonfatal shootings is also worrisome, he said. Roughly 6% of victims and 14% of suspects in nonfatal shootings were 17 or younger in 2019 and 2020.
“We’ve seen the impact of violence on young people and how they have to make decisions around what roles they want to play,” said Killens, who spent a decade as a case manager working with schoolkids.
By being in the schools, “we can deal with the conflicts” that could spill into the community, he added.
At Fremont High School, Principal Nidya Baez has welcomed a three-person team to her campus to confront gun violence. One caseworker focuses on gun violence and another on sexual assaults and healthy relationships. The third is a social worker who connects students and their families to services.
They are part of a $2 million city pilot program created after the Oakland School Board eliminated school-based police in 2020 — about one month after George Floyd was killed and after a nine-year push by community activists to kick police out of schools.
“We’ve been at a lot of funerals, unfortunately, for gang-related stuff or targeting of kids, wrong-place-wrong-time kind of thing,” said Baez, whose father was shot and injured on his ice cream truck when she was a child.
When Francisco “Cisco” Cisneros, a violence interrupter from the nonprofit group Communities United for Restorative Youth Justice, arrived at Fremont in January, students were wary, he said. Many still are. Students are hard-wired not to share information — not to be a “snitch” — or open up about themselves or their home life, especially to an adult, Cisneros said. And they don’t want to talk to fellow students from another network, group, or gang.
“If we catch them at an early age, right now, we can change that mindset,” said Cisneros, who was born and raised in Oakland.
Cisneros pulls from his past to build a rapport with students. This summer, for example, when he overheard a student chatting on the phone to an uncle in jail, Cisneros asked about him. It turns out Cisneros and the boy’s uncle had grown up in the same neighborhood.
That was enough to begin a relationship between Cisneros and the student, “J,” who declined to be identified by his full name for fear of retribution. The 16-year-old credits Cisneros, whom he describes as “like a dad,” with keeping him engaged in school and employed with summer jobs — away from trouble. Still, he regularly worries about making a wrong move.
“You could do one thing and you could end up in a situation where your life is at risk,” J said in Cisneros’ office. “You go from being in school one day to being in a very bad, sticky situation.”
The program is underway in seven high schools, and Cisneros believes he has helped prevent a handful of conflicts from escalating into gun violence.
A Better Life
After his school counselor was shot at Rudsdale High School in September 2022, Velasquez Lopez heard that the man and other victims were treated at nearby Highland Hospital.
“Seeing him get hurt, he obviously needed medical attention,” Velasquez Lopez said. “That made it obvious I could help my community if I were to be a nurse to help people that live around my area.”
When a recruiter from the Alameda Health System came to campus to promote a six-week internship at Highland Hospital, Velasquez Lopez applied. It was, he said, a dramatic step for a student who had never cared about school or sought vocational training.
Over the summer, he volunteered in the emergency room, learned how to take a patient’s vitals, watched blood transfusions, and translated for Spanish-speaking patients.
Velasquez Lopez, who graduated this year, is now looking for ways to get a nursing degree. The cost of college is out of reach at the moment, but he knows he doesn’t want to stay in a city where you can easily buy a gun for $1,000 — or half that, if it’s been used in a crime.
Velasquez Lopez said he has bigger goals for himself.
Young people in East Oakland “always feel like we’re trapped in that community, and we can’t get out,” he said. “But I feel like we still have a chance to change our lives.”
This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.
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 4 months ago
california, Multimedia, Public Health, States, Disparities, Guns
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 5 months ago
Health Industry, Public Health, Children's Health, The Health 202, vaccines
What I Learned From the World’s Last Smallpox Patient
Rahima Banu, a toddler in rural Bangladesh, was the last person in the world known to contract variola major, the deadly form of smallpox, through natural infection. In October 1975, after World Health Organization epidemiologists learned of her infection, health workers vaccinated those around her, putting an end to variola major transmission around the world.
The WHO officially declared smallpox eradicated in 1980, and it remains the only human infectious disease ever to have been eradicated.
Among infectious-disease doctors like me, Banu is famous as a symbol of the power of science and modern medicine.
And yet, beyond that distinction, Banu has largely been forgotten by the public. That fate is a reminder that, well after a global pandemic recedes from headlines in wealthy countries, its survivors have needs that go unmet. Although Banu survived smallpox, she’s been sickly her whole life. She was once bedridden for three months with fevers and vomiting, but she couldn’t afford to see a good doctor. The doctor she could afford, she recalled, prescribed her cooked fish heads. Banu also complains of poor vision: “I cannot thread a needle, because I cannot see clearly,” she told me, via a translator, during an interview in Digholdi, the village where she lives.
“I cannot examine the lice on my son’s head and cannot read the Quran well because of my vision,” she said.
In the years following smallpox eradication, journalists from all over the world traveled to interview Banu, but they petered out years ago. “Mother is so famous, but they do not take any follow-up of Mom to know whether she is in a good or bad state,” her middle daughter, Nazma Begum, told me.
Banu and her family are proud of her place in history, but their role in the eradication of smallpox speaks to the limits of merely fighting diseases. In his biography of the doctor and philanthropist Paul Farmer, author Tracy Kidder recorded a Haitian saying: “Giving people medicine for TB and not giving them food is like washing your hands and drying them in the dirt.”
After Banu and her family survived smallpox, the rest of the world dried its hands in the dirt — just as it did for the poorest victims of covid-19 and later the most marginalized people with mpox, formerly known as monkeypox.
I traveled to South Asia to speak with aging public health workers and smallpox survivors in South Asia for the audio-documentary podcast “Epidemic: Eradicating Smallpox.”
To meet Banu, I flew 14 hours to Delhi and another two hours the next day to Dhaka, then took a five-hour drive to Barishal, followed the next day by a 90-minute ferry ride and a two-hour drive to arrive in Digholdi. Banu and her family — her husband, their three daughters, and their son — share a one-room bamboo-and-corrugated-metal home with a mud floor. The home, which lacks indoor plumbing, is divided down the middle by a screen and a curtain. Water leaks in through the roof, soaking their beds. A bare bulb hangs from a wire overhead. Her in-laws used to live with them, too, but they have passed away.
Women in rural Bangladesh rarely work outside the home. Banu’s husband, Rafiqul Islam, pedals a rickshaw. Some days he earns nothing. On a good day, he might make 500 taka (not quite $5). Although the World Health Organization arranged for a plot of land in her name, Banu said, the family has nowhere to cultivate. “They gave me the land, but the river consumes that. Some of it is in the river,” she said. Cyclones and rising sea levels have led to coastal erosion and saltwater intrusion, and there have also been land disputes.
Begum, now 23, completed a year of college but then dropped out. Banu and her husband couldn’t afford the fees. Instead, they arranged for her to marry. Her mother’s fame “did not help me in any way in my studies or financially,” Begum told me.
The family’s financial life is precarious. Five hundred taka used to buy a 10-kilogram bag of rice and vegetables. During my visit in 2022, the instability of the Russia-Ukraine war created fluctuating oil prices, and Banu said that amount was enough to pay only for the rice.
Banu is well aware that thanks to vaccination, millions of people no longer die of smallpox and other infectious diseases. By one estimate, the eradication of smallpox has prevented at least 5 million deaths around the world each year. Vaccines remain one of the most cost-effective and lifesaving gifts of modern medicine. The Centers for Disease Control and Prevention estimates that the U.S. saves 10 times what it spends on childhood vaccination. But all this is cold comfort to Banu when she and her family are struggling to survive.
Every public health crisis leaves people behind. When I worked as an Ebola aid worker in Guinea in 2015, residents asked why I cared so much about Ebola when local women were hemorrhaging in childbirth and didn’t have enough to eat. They were right not to trust our efforts. Why should they upend their lives to help us defeat Ebola? They knew their lives wouldn’t be materially better when we declared victory and left, as we had done so many times before as soon as our own interests were protected. Their prediction was correct.
As the coronavirus pandemic winds down in the United States, Banu’s life is a reminder that illness has a long tail of consequences and doesn’t end with a single shot. The world’s most powerful nation hasn’t ensured equitable access for its own citizens to health care and lifesaving tools such as covid vaccines, Paxlovid, and monoclonal antibodies. The resulting disparities will get worse as the federal government finishes turning America’s emergency covid response over to the routine health care system. Many Americans can’t afford to stay home when they or their children are sick. Families lack support to care for young or elder family members or people with medical illnesses or disabilities. Many say their biggest worry is paying for groceries or gas to get to work.
Their plight is less extreme than Banu’s, but their suffering is real — and it is magnified worldwide. As long as vulnerable communities are deprived of holistic, comprehensive responses to mpox, covid, Ebola, or other public health emergencies to come, these people will have a reason to be suspicious, and enlisting their help to fight the next crisis will be that much harder.
A version of this article first appeared in The Atlantic in August 2022.
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
Public Health, Race and Health, Epidemic
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 5 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
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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
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Zach is senior producer for audio with KFF Health News, where he supervises all levels of podcast production.
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Taylor is associate audio producer for Season 2 of Epidemic. She researches, writes, and fact-checks scripts for the podcast.
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Oona is a digital producer and illustrator with KFF Health News. She researched, sourced, and curated the images for the season.
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1 year 5 months ago
Multimedia, Public Health, Environmental Health, Epidemic, Podcasts, vaccines
An Arm and a Leg: John Green vs. Johnson & Johnson (Part 1)
Why is treating drug-resistant tuberculosis so expensive?
Pharmaceutical giant Johnson & Johnson’s patents on a drug called bedaquiline have a lot to do with it.
Why is treating drug-resistant tuberculosis so expensive?
Pharmaceutical giant Johnson & Johnson’s patents on a drug called bedaquiline have a lot to do with it.
In this episode of “An Arm and a Leg,” host Dan Weissmann speaks with writer and YouTube star John Green about how he mobilized his massive online community of “nerdfighters” to change the company’s policy and help make the drug more accessible.
But not every lifesaving drug has a champion with a platform as big as Green’s. Drug companies’ patents limit access to affordable treatments as well.
Weissmann also speaks with drug-patent expert Tahir Amin about how companies keep their drugs under patent for so long and the legal challenges that have been made to these policies around the world.
Dan Weissmann
Host and producer of "An Arm and a Leg." Previously, Dan was a staff reporter for Marketplace and Chicago's WBEZ. His work also appears on All Things Considered, Marketplace, the BBC, 99 Percent Invisible, and Reveal, from the Center for Investigative Reporting.
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Transcript: John Green vs. Johnson & Johnson (Part 1)
Note: “An Arm and a Leg” uses speech-recognition software to generate transcripts, which may contain errors. Please use the transcript as a tool but check the corresponding audio before quoting the podcast.
Dan: Hey there — A little while ago, I got to talk with this widely-beloved dude.
John Green: My name is John Green, and I’m a writer and YouTuber.
Dan: John Green, writer, may be the most likely to ring a bell. His best-known book, “The Fault in Our Stars,” sold millions of copies and became a movie.
But before he was such a big deal as a writer, he and his brother Hank were a big deal on YouTube. And they still are. We’ll get into the details a little bit later.
But for now the thing to know is: Pretty recently, John Green got on the main YouTube channel he and his brother share, and started talking to hundreds of thousands of people about how the drug-maker Johnson & Johnson was using legalistic drug patent games to deny access to life saving tuberculosis medicine to millions of people in poor countries. And John Green wanted anybody listening to stand up and do something about it.
John Green: Tell your friends about this injustice, tell your family, tell the internet, because the only reason Johnson Johnson executives think they can get away with this is that they think we aren’t paying attention in the part of the world where they sell most of their products, their Band Aids, their Tylenol, their Listerine.
Dan: And a lot of the people who watch John Green’s videos– the community calls themselves “nerdfighters” — made a fair amount of noise.
And a few days later, Johnson & Johnson seemed to blink. The company issued a statement saying it would allow a cheaper generic version of that TB drug to be more widely distributed. Here’s John’s brother Hank from their next YouTube video.
Hank Green: And this happened in a week, John, you made a video on Tuesday, “it’s Friday right now! I’m really proud to be a part of this community I’m really proud to be your brother…”
Dan: I mean, that’s a super-fun story that we’re gonna get into: How a self-proclaimed nerd raised an internet posse to influence a global pharma giant to do something pretty decent-sounding.
We are definitely going to tell that story.
… But that story is just a first impression, because the whole thing is bigger and way more complicated.
As John Green would tell you –as he told me – he was adding his bit to a global movement — to advocates and lawyers in places like India, for instance, that have been doing the heavy, heavy lifting, for years.
And, of course, to understand any of this, we are going to have to get into how pharma companies use drug patents. And what it means.
And that is part of where this story comes home.
As John Green mentioned in his video, the story of this tuberculosis drug wouldn’t normally draw a lot of attention in the U.S. TB isn’t one of our top health issues.
But … the mechanisms at play with this tuberculosis drug – the patent games – are some of the same mechanisms that make so many drugs here so expensive: Drugs like Humira, and insulin, and pretty much everything else.
And here’s what’s actually the most interesting part:
Behind the first impression version of this story – nerds in the U.S. and their online posse for people in what’s called the Global South –
There’s a story about people and ideas from the Global South coming here to save the U.S. from our own messed-up drug patent system.
Because they’ve figured out that unless we save ourselves, they’re screwed too. That’s a LOT! And it’s gonna take us two episodes to connect all the dots.
You ready? Here we go…
This is An Arm and a Leg. A show about why health care costs so freaking much, and what we can maybe do about it. I’m Dan Weissmann. I’m a reporter, and I like a challenge. So our job on this show is to take one of the most enraging, terrifying, depressing parts of American life, and to bring you something entertaining, empowering, and useful.
And so, let’s start with John Green — YouTuber.
John and his brother Hank were among the people who invented the idea of being a professional quote-unquote “creator” on the internet – maybe kind of by accident, at first. But they were hugely successful at it.
In 2007, they started posting video messages to each other on this still-kinda-new website called YouTube. They thought a few hundred people might be interested, if they kept it up for a year.
Then Hank posted a song about waiting for the last Harry Potter book to come out.
Hank Green: [Singing] … I’m getting kind of petrified. What would Ron do if Hermione died or if Voldemort killed Hedwig, Just for yucks? …
Dan: It got a million views– which, early YouTube? That was huge. And they were off. Today, that original YouTube channel has more than three and a half million subscribers. Hank now manages more than a hundred full-time employees and a whole bunch of contractors.
And, you know, it’s impossible to sum up the thousands of videos they’ve shared.
Hank Green: Good morning, John. Today we’re gonna be making cinnamon toast two different ways.
John Green: Good morning, Hank, it’s Tuesday. So I need your help with the thing I’m working on. I need to learn some jokes, but not just any jokes.
Dan: But it’s fair to say digressive, ranty arguments are kind of a staple.
John Green: Good morning Hank, it’s Tuesday. I kind of hate Batman.
Hank Green: Good morning, John, you pretty much got Batman entirely wrong.
John Green: Batman is just a rich guy with an affinity for bats who’s playing out his insane fantasy of single-handedly ridding Gotham of crime. How is that heroic?
Hank Green: Of course, I know that Your video on Tuesday wasn’t really about Batman, it was just using Batman as a tool to say something.
Dan: The arguing may have something to do with why they call their community nerd-fighters.
But the idea is more that this is a community of nerds fighting for something. As they put it: fighting to ‘reduce the amount of suck in the world.’
Partly by producing things that can be amusing and sweet and thoughtful – but also by giving money to worthy causes and encouraging others to do the same.
Every year, since the beginning, they have hosted a kind of online telethon called the Project for Awesome.
John Green: Good morning, Hank. It’s Thursday, December 17th, 2009. Time for the Project for Awesome! Hooray! Oh! [crashing sound] Ow! Whoa! I got too excited about the awesome.
Dan: It is SUPER-interactive: People upload videos pitching their favorite charities, they vote, they give. They’ve raised more than 30 million dollars. And a lot of it has gone to an organization called Partners in Health, which provides incredibly effective health services in places like Haiti and Sierra Leone.
And just to indulge my own tendency to nerdy digression here: A book about Partners in Health and its founder, Paul Farmer, is one of my favorite books of all time.
It’s called Mountains Beyond Mountains, and when we finally do start a book club – and I haven’t forgotten making that suggestion here – I want to nominate it as one of our first picks.
Anyway, the Green brothers are huge supporters of Partners in Health. And then, three years ago, John started one of his weekly videos this way.
John Green: Good morning, Hank, it’s Tuesday. So over the next five years, our families are donating six and a half million dollars to Partners in Health Sierra Leone. Also we need your help…
Dan: And here’s where we get to tuberculosis. In the run up to that commitment, John Green visited Sierra Leone with his wife Sarah, and met some of the folks there from Partners in Health.
Here’s how he told the story to me. I’m not gonna interrupt:
John Green: On the last day, two of the physicians from Partners in Health, who we were visiting with said, “Hey, if it’s not a big deal to you, we’d really like to stop by this TB hospital on the way back to the capitol because we have a case we’re really concerned about.” And I said, “Yeah, of course, I’m not going to get in the way of actual doctoring.” So … But I, you know, I didn’t think much of it at the time.
So we get to this TB hospital. And immediately upon arriving, the doctors go off to do doctor stuff. And Sarah and I are just sort of sitting there in this little nine year old boy who tells me his name is Henry, which is my son’s name, at the time, my son was nine, kind of grabs me by the shirt and starts walking me around. And he takes me to the lab, shows me how to look into the microscope to see if a specimen has tuberculosis, introduces me to the lab technician, he takes me to the patient wards, he takes me to the kitchen where they make the food, he takes me all over the hospital, and then eventually I end up in the room with where the doctors are, and, uh, and the, and the kid has departed and I said, you know, “I just spent 30 minutes with an extraordinary child named Henry and he gave me a tour of the whole facility and I have no idea who he is. Is he somebody’s kid? Is he a doctor’s kid?” And one of the doctors said, “you know, that’s what I thought when I first got here, uh, about Henry because he does seem like that. And actually he’s the case that we’re so concerned about that we, um, needed to come here.” And he wasn’t nine. He was 16. He was just really stunted and emaciated by tuberculosis.
And, um, even though he was feeling pretty good at the time, the doctors knew that his treatment for multidrug resistant TB was failing, and that he needed access to a new cocktail that included bedaquiline, this drug that’s been around in the U.S. since 2013, but was, was at the time totally unavailable in Sierra Leone. And so, that was my introduction to TB and we were on our way to the airport and I said, “what’s gonna, what’s gonna happen to that kid?” And they were like, “it’s going to be a difficult path for him um, if we can’t get, if we can’t get the new treatment cocktail to him, he has a very low chance of survival.”
So that’s the beginning of the story for me, is meeting Henry.
Dan: I’m going to skip to the end of this part of the story: Henry’s OK. He’s alive, because he did get the drug cocktail that included Bedaquiline.
But, after that visit, John Green did not know that, and he started obsessing a bit about tuberculosis. Reading about it, thinking about it. And over the last year or so, he started occasionally sharing, making videos about TB. Some of them were fun, short, nerdy explainers.
John Green: What if I told you that tuberculosis gave us the cowboy hat?
John Green: How did TB reinvigorate women’s shoe fashions?
John Green: How did tuberculosis help New Mexico become a state? I’m so glad you asked.
Dan: But he also dug into the deeper reason he’d become obsessed with TB. Because it’s a surprisingly big deal, still.
John Green: It’s almost certain that in the last 2, 000 years, more people died just from tuberculosis than died from all wars combined.
And before you think like, oh, but that’s ancient history. No, more people died last year from tuberculosis than died in war, and every year going back to World War II
Dan: We fact checked that. He’s actually understating things. By a lot.
TB is a growing problem. In the middle of the 20th Century, new medicines took TB off the list of diseases that most people in the rich parts of the world had to worry about. But it never got wiped out.
And in less-rich parts of the world, where access to the best treatments was spottier, drug-resistant strains of TB developed and developed. But no new drugs came out– no drugs for drug-resistant TB.
Until bedaquiline, produced by Johnson & Johnson. The drug that did eventually help save Henry, the kid that John Green met in Sierra Leone.
But bedaquiline is expensive. So people in less-rich parts of the world often can’t get it. One study estimated that eight out of nine people who needed treatment with a drug like bedaquiline weren’t getting it.
And of course medicines stay expensive when they’re under patent protection: Once the patent on a drug expires, anybody can make and sell a generic version of the drug. Which, you know, competition, usually allows prices to fall.
And in one way, as John Green started making tuberculosis videos in 2022, it might have seemed like there was hope coming up:
Bedaquiline was patented in 2003. Patents last twenty years. By 2023, that patent would expire.
Except, not really. Because it turns out, patents on drugs have ways of living for way more than twenty years.
That’s next.
MIDROLL: This episode of An Arm and a Leg is produced in partnership with KFF Health News. That’s a nonprofit newsroom that covers health care in America. KFF Health News are amazing journalists – their work wins all kinds of awards every year – and I’m honored to work with them. We’ll have a little more information about KFF at the end of this episode.
Dan: So, let’s talk about drug patents and how they work– and why they don’t just last 20 years. And this is something my colleague Emily Pisacreta has been interested in for a long time.
Emily: It’s true. As I’ve said before on the show, I’m an insulin-dependent diabetic. If I can’t get insulin, I’m literally dead. And, insulin is super expensive. And insulins have became so expensive in part because of the kinds of patents on them – even though those patents are way more than twenty years old! ..
Dan: Right, so you’ve got a big interest in this question: How can a patent last more than twenty years?
Emily: And Dan, my answer to that question is a riddle: When is a patent not a patent?
Dan: OK, I give up. When is a patent not a patent.
Emily: When it’s 74 patents.
Dan: Yeah, this riddle is going to need some explaining.
Emily: Right. So, for a while I used an insulin called Lantus.It’s a once-a-day, long acting insulin made by the French company Sanofi. Sanofi first patented Lantus in 1994. So, that should mean it’s out of patent protection by 2014, right?
Dan: Uh-huh
Emily: Except, according to a report from a few years back, Sanofi actually filed for 74 patents on Lantus. And a lot of those patents were filed WAY after 1994. So, ONE patent from 1994 would’ve lasted till 2014. 74 patents could’ve lasted until 2031.
Dan: Ah, hence the very-specific answer for your riddle. I mean, I knew the principle – these insulin products have multiple patents on them, but 74 is … more than I’d imagined. What are 74 things you even COULD patent?
Emily: I mean, for Lantus, there are patents on formulations to improve stability. Like, all right … But there are also patents on the pen cartridge that Lantus comes in. And inside of that, a whole bunch of patents on the drive mechanisms, like the little plastic piston that lets you pick the right dose. These kinds of things.
Dan: OK. Now, I notice you said, those 74 patents COULD’ve lasted until 2031?
Emily: That’s right. As it turns out, in the case of Lantus, another drug maker actually did fight some of Sanofi’s later patents and won. But more often – and I mean a lot more often — simply filing for a patent is enough to keep generic makers away.
Dan: Sure. Who wants to spend money fighting a patent lawsuit when you could just y’know, manufacture some other drug?
Emily: Right. And of course this is not just insulin.
Tahir Amin: Oh, this is the standard practice. This happens with every drug.
Emily: That’s Tahir Amin – one of the big global experts on drug patents. Tahir the CEO and cofounder of a non-profit called I-MAK, which stands for …
Tahir Amin: The Initiative for Medicines Access and Knowledge. We work on building a more just and equitable access to medicine system.
Emily: The report that documented 74 patents on Lantus, that one insulinI used to use? Tahir’s group wrote it. And Tahir says this is business as usual, because it means big money.
Tahir Amin: Particularly when you’re talking about some of the drugs that you see in the US market, like for rheumatoid arthritis, these are worth billions of dollars.
Emily: Tahir’s group did a study on the 12 best-selling drugs in the U.S. They had an average of 131 patents each. If all the patents stick, that’s an average of 38 years of patent protection.
Dan: So maybe we can update your riddle:
When is a patent not a patent?
When it’s 131 patents.
Emily: Yeah, activists and experts call this kind of thing “patent thicketing” or “evergreening.”
Dan: I’ve been reading up on this too. Drug companies have their own name for this practice. They call it “life-cycle management.”
Emily: What a term of art. And actually bedaquiline, the TB drug,is a great example. In 2014, Tahir did what they call a “patent landscape” on bedaquiline, mapping all the different patents J&J filed around the world.
Tahir Amin: We all knew that with the advent of multiple drug resistance TB, we needed to know how we’re gonna get these drugs to the communities and the countries that need them most.
Emily: He identified a long list of patents J&J filed. And the most important being the original formula for the drug, set to expire in 2023, and the second most important patent was on something called the salt formulation for the drug.
Dan: Salt formulation.
Emily: Yep, and it’s kind of worth getting into the weeds here just for a second. Because this sort of thing is at the absolute heart of these drug patent games. When you develop a drug, the first step is finding a molecule that works in a test tube, that does the thing you want, like kills the germ. That gonna be the first patent, that molecule. But the molecule isn’t medicine.
Tahir Amin: You have to develop it, formulate it so that it’s actually more bioavailable, that it can get into the bloodstream and, and do whatever biological activity that it does. And this is classic organic chemistry stuff that is routine.
Emily: It’s routine. SO what he’s saying here, and other experts agree, by the way, identifying a salt formulation that can work as medicine isn’t where the innovation is. And most importantly, it doesn’t have to take a long time. But J&J didn’t apply for their secondary patent on it until a full four years after their initial patent.
Dan: I’ve started reading about “lifecycle management,” you know, what the pharma industry calls all this. And this is literally the playbook. One lawyer has advice about when to file this kind of secondary patent, here’s what he says, quote:
“You want to do this as late as possible, but before clinical trials. If Company X can hold off filing for two or three years during the drug discovery phase, it will buy more time on the back end of the patent’s term.”
Emily: Yep, and J & J waited four years. A little extra.
Dan: And we asked Johnson & Johnson: Hey, did you put off filing this secondary patent on the salt formulation to stretch out your patent rights? We haven’t heard back.
So: TB advocates kind of had their eye on July 2023. Because in July 2023 the original patent that Johnson & Johnson had on bedaquiline was set to expire. And the secondary patent, this sort of basic add on, was to become the next big obstacle.
So, back to John Green. He’s learning all this stuff about TB – including about how the secondary patent on bedaquiline is gonna keep clamping down access.
And he’s making all these TB videos, but it’s not like he has some kind of big plan:
John Green: But the, for me, You know, this is all I was thinking about. It was the first thing I thought about in the morning and the last thing I thought about before I went to sleep, is how did we end up in a world where the world’s deadliest infectious disease is largely ignored in the richest parts of the world?
Dan: And he was getting kind of discouraged.
John Green: I felt powerless before it. And this is one of the real lessons for me is that I felt like, well, what … what are we going to do? It’s not like Johnson & Johnson is going to abandon the idea of secondary patents, right?
Dan: He knew: secondary patents can be worth billions of dollars.
John Green: And so they’re not going to abandon these attempts to make their patents last longer than they should because they’re a for profit company. And I felt really … Yeah, I just felt powerless.
Dan: And then, earlier this year, something changed. It was not something that John Green, or an army of nerds could have done, or could’ve done anything about.
It was done by India’s patent office – responding to a legal challenge brought by two young women who had survived tuberculosis – one from India and one from South Africa.
It was based on legal work that our new pal Tahir Amin and others did in India almost twenty years ago.
And gave John Green an idea of how an army of nerdfighters could join this battle.
That’s next time, on An Arm and a Leg. Till then, take care of yourself.
This episode of An Arm and a Leg was produced by me, Dan Weissmann, and Emily Pisacreta – with help from Bella Cjazkowski, and edited by Ellen Weiss.
Daisy Rosario is our consulting managing producer.
Adam Raymonda is our audio wizard.
Our music is by Dave Winer and Blue Dot Sessions.
Gabrielle Healy is our managing editor for audience. She edits the First Aid Kit Newsletter.
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KFF Health News' 'What the Health?': An Encore: 3 HHS Secretaries Reveal What the Job Is Really Like
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.
This week, while KFF Health News’ “What the Health?” takes a break, here’s an encore of a favorite episode this year: Host and chief Washington correspondent Julie Rovner leads a rare conversation with the current and two former secretaries of Health and Human Services. Taped in June before a live audience at Aspen Ideas: Health, part of the Aspen Ideas Festival, in Aspen, Colorado, Secretary Xavier Becerra and two of his predecessors, Kathleen Sebelius and Alex Azar, talk candidly about what it takes to run a department with more than 80,000 employees and a budget larger than those of many countries.
Among the takeaways from this week’s episode, originally aired in June:
- The Department of Health and Human Services is much more than a domestic agency. It also plays a key role in national security, the three HHS secretaries explained, describing the importance of the “soft diplomacy” of building and supporting health systems abroad.
- Each HHS secretary — Sebelius, who served under former President Barack Obama; Azar, who served under former President Donald Trump; and Becerra, the current secretary, under President Joe Biden — offered frank, sobering, and even funny stories about interacting with the White House. “Anything you thought you were going to do during the day often got blown up by the White House,” Sebelius said. Asked what he was unprepared for when he started the job, Azar quipped: “The Trump administration.”
- Identifying their proudest accomplishments as the nation’s top health official, Azar and Becerra both cited their work responding to the covid-19 pandemic, specifically Operation Warp Speed, the interagency effort to develop and disseminate vaccines, and H-CORE, which Becerra described as a quiet successor to Warp Speed. They also each touted their respective administrations’ efforts to regulate tobacco.
- Having weathered recent debates over the separation of public policy and politics at the top health agency, the panel discussed how they’ve approached balancing the two in decision-making. For Becerra, the answer was unequivocal: “We use the facts and the science. We don’t do politics.”
Click to open the transcript
Transcript: An Encore: 3 HHS Secretaries on What the Job Is Really Like
[Editor’s note: This transcript, generated using transcription software, has been edited for style and clarity.]
Julie Rovner: Hello “What the Health?” listeners. We’re taking this week off from the news while KFF holds an all-staff retreat. We’ll be back next week, but in the meantime, here’s an encore of one of our favorite episodes of the year — a chat with three Health and Human Services Secretaries. We’ll be back next week with our regular news roundup.
Hello and welcome back to “What the Health?” I’m Julie Rovner, coming to you this week from the Aspen Ideas: Health conference in Aspen, Colorado. We have a cool special for you this week. For the first time, the current secretary of Health and Human Services sat down for a joint interview with two of his predecessors. This was taped before a live audience on Wednesday evening, June 21, in Aspen. So, as we like to say, here we go.
Hello. Good evening. Welcome to Aspen Ideas: Health. I’m Julie Rovner. I’m the chief Washington correspondent for KFF Health News and also host of KFF Health News’ health policy podcast, “What the Health?,” which you are now all the audience for, so thank you very much. I’m sure these people with me need no introduction, but I’m going to introduce them anyway because I think that’s required.
Immediately to my left, we are honored to welcome the current U.S. secretary of Health and Human Services, Xavier Becerra. Secretary Becerra is the first Latino to serve in this post. He was previously attorney general of the state of California. And before that, he served in the U.S. House of Representatives for nearly 25 years, where, as a member of the powerful Ways and Means Committee, he helped draft and pass what’s now the Affordable Care Act. Thank you for joining us.
Next to him, we have Kathleen Sebelius, who served as secretary during the Obama administration from 2009 to 2014, where she also helped pass and implement the Affordable Care Act. I first met Secretary Sebelius when she was Kansas’ state insurance commissioner, a post she was elected to twice. She went on to be elected twice as governor of the state, which is no small feat in a very red state for a Democrat. Today, she also consults on health policy and serves on several boards, including — full disclosure — that of my organization, KFF. Thank you so much for being here.
And on the end we have Alex Azar, who served as HHS secretary from 2018 to 2021 and had the decidedly mixed privilege of leading the department through the first two years of the covid pandemic, which I’m sure was not on his to-do list when he took the job. At least Secretary Azar came to the job with plenty of relevant experience. He’d served in the department previously as HHS deputy secretary and as general counsel during the George W. Bush administration and later as a top executive at U.S. drugmaker Eli Lilly. Today, he advises a health investment firm, teaches at the University of Miami Herbert Business School, and sits on several boards, including the Aspen Institute’s. So, thank you.
Former Secretary of Health and Human Services Alex Azar: Thank you.
Rovner: So I know you’re not here to listen to me, so we’re going to jump in with our first question. As I’m sure we will talk about in more detail, HHS is a vast agency that includes, just on the health side, agencies including the Food and Drug Administration, the National Institutes of Health, the Centers for Disease Control and Prevention, and the Centers for Medicare & Medicaid Services. The department has more than 80,000 employees around the country and throughout the world and oversees more than one and a half trillion dollars of federal funding each year. I want to ask each of you — I guess we’ll start with you — what is the one thing you wish the public understood about the department that you think they don’t really now?
Secretary of Health and Human Services Xavier Becerra: Given everything you just said, I wish people would understand that the Constitution left health care to the states. And so, as big as we are and as much as we do — Medicare, Medicaid, CHIP [Children’s Health Insurance Program], Obamacare — we still don’t control or drive health care. The only way we get in the game is when we put money into it. And that’s why people do Medicare, because we put money into it. States do Medicaid because we put money into it. And it became very obvious with covid that the federal government doesn’t manage health care. We don’t have a national system of health or public health. We have a nationwide system of public health where 50 different states determine what happens, and so one state may do better than another, and we’re out there trying to make it work evenhandedly for everyone in America. But it’s very tough because we don’t have a national system of public health.
Rovner: Secretary, what’s the thing that you wish people understood about HHS?
Former Secretary of Health and Human Services Kathleen Sebelius: Well, I agree with what Secretary Becerra has said, but it always made me unhappy that people don’t understand fully, I don’t think, the international role that HHS plays, and it is so essential to the safety and security and resilience of the United States. So we have employees across the world. CDC has employees in about 40 other countries, and helping to build health systems in various parts of the world, sharing information about how you stand up a health system, what a great hospital looks like. NIH does experiments and clinical trials all over the globe and is regarded as the gold standard. And we actually, I think, at HHS were able to do what they call soft diplomacy. And a lot of countries aren’t eager to have the State Department involved. They’re certainly not eager to see soldiers. Our trade policies make some people uncomfortable. But they welcome health professionals. They welcome the opportunity to learn from the United States. So it’s really a way often to get into countries and make friendships. And we need to monitor across the globe, as covid showed so well. When an outbreak happens someplace else in the world, we can’t wait for it to arrive on the border of the United States. Safety and security of American citizens really depends on global information exchange, a global surveillance exchange. The CDC has also trained epidemiologists in regions around the world so that they can be faster and share information. And I think too often in Congress, those line items for foreign trips, for offices elsewhere, people say, “Well, we don’t really need that. We should focus all our attention on America.” But I’ve always thought, if folks really understood how integral it is not just to our health security, but really national security, that we have these partnerships — and it’s, as I say, I think the best soft diplomacy and the cheapest soft diplomacy underway is to send health professionals all over the globe and to make those friendships.
Rovner: Do you think people understand that better since covid?
Sebelius: Maybe. You know, but some people reacted, unfortunately, to covid, saying, “Well, we put up bigger walls, and we” — I mean, no disease needs a passport, no wall stops things from coming across our borders. And I’m not sure that still is something that people take to heart.
Rovner: Secretary Azar, you actually have the most — in terms of years — experience at the department. What is it that people don’t know that they should?
Azar: So I probably would have led with what Secretary Becerra said about just how highly decentralized the public health infrastructure and leadership and decision-making is in the United States. I mean, it really — all those calls are made, and it’s not even just the 50 states. It’s actually 62 public health jurisdictions, because we separately fund a whole series of cities. I’ll concur in that. I’d say the other thing that people probably don’t understand, and maybe this is too inside baseball, is the secretary of HHS is, on the one hand, probably the most powerful secretary in the Cabinet and, on the other hand, also quite weak. So literally every authority, almost every authority, in the thousands and thousands of pages of U.S. statute that empower programs at HHS, say, “The secretary shall …” So the FDA, the CDC, CMS, all of these programs really operate purely by delegation of the secretary, because Secretary Becerra allows them to make decisions or to run programs. They are his authorities. And so the media, then, when the secretary acts, will … [unintelligible] … “How dare you,” you know, “how dare you be involved in this issue or that issue?” Well, it is legally and constitutionally Secretary Becerra’s job. And, on the other hand, you are supervising — it’s like a university, because you’re also supervising operating divisions that are global household brands. It is really like being a university president, for all that’s good and evil of that. You have to lead by consensus. You have to lead by bringing people along. You are not a dictator, in spite of what the U.S. statutes say. It’s very, very similar to that — that you, the secretary, is both powerful, but also has to really lead a highly matrixed, consensus-based organization to get things done.
Rovner: You’re actually leading perfectly into my next question, which is, how do you juggle all the moving pieces of this department? Just putting the agency heads in one room could fill a room this size. So tell us what sort of an average day for each of you would look like as secretary, if there’s such a thing as an average day.
Azar: Well, first, not an average administration, so take with a grain of salt my average day. So, interspersed among the two to five phone calls with the president of the United States between 7 a.m. and midnight, you know, other than that, um — I started every day meeting with my — you know, as secretary, you’ve got to have a team around you that’s not just your operating divisions, but I would start every morning — we would have just a huddle with chief of staff, deputy chief of staff, my head of public affairs. Often my general counsel would join that, my legislative leader. Just what’s going to hit us in the face today? Like, what are we trying to do, and what’s going to hit us in the face today? Just a situational awareness, every morning at about 8 a.m., quick huddle on that, and then diving into really the rhythm of the day of — I tried to drive — I use a book that I helped actually do some of the work on called “The 4 Disciplines of Execution,” just a tool of how do you focus and drive change in very complex organizations? So I tried to focus on four key initiatives that I spent as much of my time as secretary on leading and pushing on, and so I tried to make sure as much of my time was doing that. But then it’s reactive. You’re having to go to White House meetings constantly. You have to sign off on every regulation at the department. And so you’re in meetings just getting briefed and deciding approve or disapprove, so that rhythm constantly, and then add travel in, add evening commitments, add speeches. I’d say the biggest challenge you have as a leader in HHS is that first point of, focus, because you could be like a bobber on the water, just going with whatever’s happening, if you don’t have a maniacally focused agenda of, “I’ve got a limited amount of time. I’m going to drive change here. And if I don’t spend time every day pushing the department on this issue, being basically a burr in the saddle to make it happen, it won’t.” And you’ve just got to constantly be on that.
Rovner: Secretary Sebelius, what did your average day look like?
Sebelius: Well, I’m not going to repeat what Alex has just said. A lot of that goes on in the daily routine. First of all, I think all of us would be sent home the night before with a binder of materials — briefings for what you’re going to do the next day. So you may have 10 meetings, but each of those has a 20-page brief behind it. And then what the issues are, what the questions might be. So that’s your homework often that you’re leaving with at 7 or 8 at night. I like to run in the morning, and I would get up, read my schedule, and then go out and run on the [National] Mall because it sort of cleared my head. I’m proud of having — some of the folks may still be here — none of the detail ran before I started running, and my deal with them was, “I’m much older than you are, you know. We’re all going to run.”
Azar: They still —
Sebelius: Oh, here we go.
Azar: They still talk about it.
Sebelius: Well, one of them got to be a great marathon runner, you know. Can’t hurt. One guy started riding a bike, and I was like, “What are you doing?” I mean, if I fall, what are you going to do with the bike? I mean, am I going to carry it, are you going to carry it? I mean, who — anyway, so I started that way. You’d go then into the office. And one of the things that was not mentioned is HHS has an amazing, camera-ready studio, TV studio, that lots of other Cabinet agencies used. It has a setting that looks like “The View.” It has a stool that you can look in cameras, but two or three days a week we would do what they call “Around the Country.” So you would sit in a stool, and I’d be doing updates on the ACA or a pitch to enrollment or something about a disease, and you would literally have a cue card up that would say “Minneapolis, Andrea.” And I would say, “Good morning, Andrea.” And we would do a two-second spot in Minneapolis and they’d have numbers for me and then the camera would switch and it would be Bob in St. Louis. “Hello, Bob. How are you?” So that was a morning start that’s a little bit different. Anything you thought you were going to do during the day often got blown up by the White House: somebody calling, saying, you know, “The president wants this meeting,” “the vice president’s calling this.” So then the day gets kind of rearranged. And I think the description of who the key staff are around, but 12 operating agencies — any one of them could be a much more than full-time job. So just getting to know the NIH or, you know, seeing what CDC in Atlanta does every day, but trying to keep the leadership in touch, in tune, and make sure that — one of the things that, having been a governor and working with Cabinet agencies, that I thought was really important, is everybody has some input on everything. These are the stars, the agency heads. They know much more about health and their agencies than I would ever know. But making sure that I have their input and their lens on every decision that was made. So we had regular meetings where the flatter the organization, the better, as far as I’m concerned. They were all there and they gave input into policy decisions. But it is not a boring job and it’s never done. You just had to say at the end of the day, with this giant book, “OK, that’s enough for today. I’ll start again tomorrow, and there’ll be another giant book and here we go.”
Rovner: And your day, since you’re doing it now?
Becerra: I don’t know if it’s the pleasure or the bane of starting off virtually. Almost everything we did was via Zoom. I didn’t meet many of my team until months into the term because we were in the midst of covid. So we would start the days usually pretty early in the morning with Zooms and it would go one Zoom after the other. Of course, once we started doing more in-person activities, schedulers still thought they could schedule you pretty much one right after the other, and so they pack in as much as they can. I think all of us would say we’re just blessed to have some of the most talented people. I see Commissioner Califf from the FDA over there in the room. I will tell you, it’s just a yes … [applause] … . It’s a blessing to get to serve with these folks. They are the best in their fields. And you’re talking about some pretty critical agencies, FDA, NIH, CDC, CMS. I mean, the breadth, the jurisdiction, of CMS is immense. They do fabulous work. They are so committed. And so it makes it a lot easier. And then, of course, we all — we each have had — I have my group of counselors who are essentially my captains of the different agencies, and they help manage, because without that it would be near-impossible. And these are people who are younger, but my God, they’re the folks that every CEO looks for to sort of help manage an agency, and they’re so committed to the task. And so I feel like a kid in a candy store because I’m doing some of the things that I worked on so long when I was a member of Congress and could never get over the finish line. Now I get to sort of nudge everything over the finish line, and it really is helpful, as Alex said, to remind people that the statute does say, “The secretary shall … ,” not someone else, “the secretary shall … .” And so, at the end of the day, you get to sort of weigh it. And so it’s a pleasure to work with very talented, committed people.
Sebelius: Julie, I want to throw in one more thing, because I think this is back to what people don’t know, but it’s also about our days. There’s an assumption, when administrations change, the whole agency changes, right? Washington all changes. In a department like HHS, 90,000 employees scattered in the country and around the world, there are about 900 total political appointees, and they are split among all the agencies and the secretary’s office there. So you’re really talking about this incredibly talented team of professionals who are running those agencies and have all the health expertise, with the few people across the top that may try to change directions and put — but I think there’s an assumption that sort of the whole group sweeps out and somebody else sweeps in, and that really is not the case.
Rovner: So, as I mentioned, all three of you had relevant government experience before you came to HHS. Secretary Sebelius, you were a governor, so you knew about running a large organization. I want to ask all three of you, did you really understand what you were getting into when you became secretary? And is there some way to grow up to become HHS secretary?
Azar: I mean, yeah, I — yeah, I have no excuse. My first day, right after getting sworn in — the secretary has a private elevator that goes directly up to the sixth floor where the suite is, the deputy secretary’s office to the right, secretary to the left — my first day, I’m up, headed up with my security detail, and I get off and I walk off to the right. “Mr. Secretary, no, no, no. It’s this way.” Literally, it was like — it had been 11 years, but it was like coming home to me. I was literally about to walk into my old office as deputy secretary, and they show me to the secretary’s office. And I think for the first three months, I kept thinking Tommy Thompson or Mike Leavitt was going to walk in and say, “Get the hell out of my office.” And no, so it, and it was the same people, as Secretary Sebelius said. I knew all the top career people. I’d worked with them over the course of — in and out of government — 20 years. So it was very much a “coming home” for me. And it was many of the same issues were still the same issues. Sustainable growth rate — I mean, whatever else, it was all the same things going on again, except the ACA was new. That was a new nice one you gave me to deal with also. So, yeah, thank you.
Sebelius: You’re welcome. We had to have something new.
Rovner: What were you unprepared for when you took on this job?
Azar: Well, for me, the Trump administration.
Rovner: Yeah, that’s fair.
Azar: I, you know, had come out of the Bush administration. You’re at Eli Lilly. I mean, you know, you’re used to certain processes and ways people interact. And, you know, it’s just — it was different.
Sebelius: I had a pretty different experience. The rhythm of being a governor and being a Cabinet secretary is pretty similar. Cabinet agencies, working with the legislative process, the budget. So I kind of had that sense. I had no [Capitol] Hill experience. I had not worked on the Hill or served on the Hill, so that was a whole new entity. You’re not by protocol even allowed in the department until you’re confirmed. So I had never even seen the inside of the office. I mean, Alex talked about being confused about which way to turn. I mean, I had no idea [about] anything on the sixth floor. I hadn’t ever been there. My way of entering the department — I was President [Barack] Obama’s second choice. [Former South Dakota Democratic Senator] Tom Daschle had been nominated to be HHS secretary. And that was fine with me. And I said, “I’m a governor. I’ve got two more years in my term. I’ll join you sometime.” And then when Sen. Daschle withdrew, the president came back to me and said, “OK, how about, would you take this job if you’re able to get it?” And I said, “Yes, that’s an agency that’s interesting and challenging.” So I still was a governor, so I was serving as governor, flying in and out of D.C. to get briefings so I could go through hearings on this department that I didn’t know a lot about and had never really worked with, and then would go back and do my day job in Kansas. And the day that the Senate confirmation hearing began, a call came to our office from the White House. And this staffer said, “This governor? “Yes.” “President Obama has a plane in the air. It’s going to land at Forbes Air Force Base at noon. We want you on the plane.” And I said, you know, “That’s really interesting, but I don’t have a job yet. And I actually have a job here in Kansas. And here’s my plan. You know, my plan is I’m going to wait until I get confirmed and then I’ll resign and then I’ll get on the plane and then I’ll come to D.C.” And they said, “The president has a plane in the air, and it will land. He wants you on the plane.” First boss I’d had in 20 years. And I thought, “Oh, oh, OK. That’s a new thing.” So I literally left. Secretary Azar has heard this story earlier, but I left an index card on my desk in Kansas that said, “In the event I am confirmed, I hereby resign as governor.” And it was notarized and left there because I thought, I’m not giving up this job, not knowing if I will have another job. But halfway across the country I was confirmed and they came back and said — so I land and I said, “Where am I going?” I, literally, where — I mean, I’m all by myself, you know, it’s like, where am I going? “You’re going to the White House. The president’s going to swear you in.” “Great.” Except he couldn’t swear me in. He didn’t have the statutory authority, it turns out, so he could hold the Bible and the Cabinet secretary could swear me in. And then I was taken to the Situation Room, with somebody leading the way because I’d never been to the Situation Room. And the head of the World Health Organization was on the phone, the health minister from Canada, the health minister from Mexico, luckily my friend Janet Napolitano, who was Department of Homeland Security secretary — because we were in the middle of the H1N1 outbreak, swine flu, nobody knew what was going on. It was, you know, an initial pandemic. And everybody met and talked for a couple of hours. And then they all got up and left the room and I thought, woo-hoo, I’m the Cabinet secretary, you know, and they left? And somebody said to me later, well, “Does the White House find you a place to live?” I said, “Absolutely not. Nobody even asked if I had a place to stay.” I mean, it was 11 o’clock at night. They were all like, “Good night,” “goodbye,” “see ya.” So I luckily had friends in D.C. who I called and said, “Are you up? Can I come over? I’d like somebody to say, ‘Yay,’ you know, ‘we’re here.’” So that’s how I began.
Rovner: So you are kind of between these two. You have at least a little more idea of what it entailed. But what were you unprepared for in taking on this job?
Becerra: Probably the magnitude. Having served in Congress, I knew most of the agencies within HHS. I had worked very closely with most of the bigger agencies at HHS. As AG — Alex, I apologize — I sued HHS quite a —
Azar: He sued me a lot.
Becerra: Quite a few times.
Azar: Becerra v. Azar, all over the place.
Becerra: But the magnitude. I thought running the largest department of justice in the land other than the U.S. Department of Justice was a pretty big deal. But then you land and you have this agency that just stretches everywhere. And I agree with everything that Kathleen said earlier about the role that we play internationally. We are some of the best ambassadors for this country in the world because everyone wants you to help them save lives. And so it really helps. So the magnitude — it just struck me. When President Biden came in, we lost the equivalent of about — what, 13 9/11 twin tower deaths one day. Every day we were losing 11 twin tower deaths. And it hits you: You’ve got to come up with the answer yesterday. And so the White House is not a patient place, and they want answers quickly. And so you’re just, you’re on task. And it really is — it’s on you. You really — it smothers you, because you can’t let it go. And whether it was covid at the beginning or monkeypox last year, all of a sudden we see monkeypox, mpox, starting to pop up across the country. And it was, could this become the next covid? And so right away you’ve got to smother it. And the intensity is immediate. Probably the thing that I wasn’t prepared for as well, along with the magnitude, was, as I said, the breadth. Came in doing all these Zooms virtually to try to deal with the pandemic. But probably the thing that I had to really zero in on even more, that the president was expecting us to zero in on more, was migrant kids at the border and how you deal with not having a child sleep on a cement floor with an aluminum blanket and just trying to deal with that. It won’t overwhelm you necessarily, but — and again, thank God you’ve got just people who are so committed to this, because at any hour of the day and night, you’re working on these things — but the immensity of the task, because it’s real. And other departments also have very important responsibilities — clearly, Department of Defense, Department of State. But really it truly is life-and-death at HHS. So the gravity, it hits you, and it’s nonstop.
Rovner: All three of you were secretary at a time when health was actually at the top of the national agenda — which is not true. I’ve been covering HHS since 1986, and there have been plenty of secretaries who sort of were in the back of the administration, if you will, but you all really were front and center in all of these things. I want to go to sort of down the line. What was the hardest decision you had to make as secretary?
Becerra: Um …
Rovner: You’re not finished yet. I should say so far.
Becerra: I mean, there have been a lot of tough decisions, but, you know, when your team essentially prepares them up and you have all this discussion, but by the time it gets to me, it really has been baked really, really well. And now it’s sort of, White House is looking at this, we are seeing some of this, we’ve got to make a call. And again, Dr. Califf could speak to this as well. At the end of the day, the decisions aren’t so much difficult. It’s that they’re just very consequential. Do you prepare for a large surge in omicron and therefore spend a lot of money right now getting ready? Or do you sort of wait and see a little bit longer, preserve some of your money so you can use some of that money to do the longer-term work that needs to be done to prepare for the next generation of the viruses that are coming? Because once you spend the dollar, you don’t have it anymore. So you got to make that call. Those are the things that you’re constantly dealing with. But again, it just really helps to have a great team.
Sebelius: So I would say I was totally fortunate that the pandemic we dealt with was relatively short-lived and luckily far, far milder than what consumed both the secretaries to my left and right, and that was fortunate. A lot of our big decision areas were under the rubric of the Affordable Care Act and both trying to get it passed and threading that needle but then implementation. And I — you know, thinking about that question, Julie, I would say one of the toughest decisions — just because it provided a real clash between me and some of the people in the White House; luckily, at the end of the day, not the president, but — was really about the contraception coverage. Reproductive health had been something I’d worked on as a legislator, as governor. I felt very strongly about it. We’d fought a lot of battles in Kansas around it, and part of the Affordable Care Act was a preventive services benefit around contraceptive care. And that was going to be life-changing for a lot of women. And how broad it should be, how many battles we were willing to take on, how that could be implemented became a clash. And I think there were people in the administration who were hopeful that you could avoid clashes. So just make a compromise, you know, eliminate this group or that group, who may get unhappy about it. And at the end of the day, I was helped not just by people in the department, but mobilized some of my women Cabinet friends and senior White House women friends. And we sort of had a little bit of a facedown. And as I say, the president ended up saying, “OK, we’ll go big. We’ll go as big as we possibly can.” But I look back on that as a — I mean, it was a consequential decision, and it was implementation — not passing the rag in the first place, but implementing it. And it had a big impact. A big impact. It’s not one I regret, but it got a little a little tense inside, but what would be friendly meetings.
Azar: I’d use the divide Secretary Becerra talked about, which is that consequential versus hard decisions, that a lot — I think one could have a Hamlet-like character. I don’t. And so making the call when it comes to you wasn’t a terribly difficult thing, even. These are life-and-death decisions, but still yourself, you know your thought processes, you think it through, it’s been baked very well, you’ve heard all sides. You just have to make that call. So I’d maybe pivot to probably it’s more of a process thing. The hardest aspect for me was just deciding when do you fight and when do you not fight with, say, the White House? What hills do you die on? And where do you say, “Yeah, not what I would do, but I just have to live to fight another day.” Those were probably the toughest ones to really wrestle with.
Rovner: Was there one where you really were ready to die on the hill?
Azar: There were a lot. There were a lot. I mean, I’ll give you one example. I mean, I left a lot of blood on the field of battle just to try to outlaw pharmaceutical rebates, to try to push those through to the point of sale. I probably stayed to the end just to get that dag — because I, the opponents had left the administration and I finally got that daggone rule across the finish line right at the end. And that was something that I felt incredibly strongly that you could never actually change. I’ve lived inside that world. You could never change the dynamic of pharmaceutical drug pricing without passing through rebates to the point of sale. And I had so many opponents to get that done. It was a three-year constant daily battle that felt vindicated then to get it done. But that was a fight.
Rovner: And of course, I can’t help but notice that all of the things that you all are talking about are things that are still being debated today. None of them are completely resolved. Let’s turn this around a little bit. I wanted to ask you what you’re most proud of actually getting accomplished. Was it the rebate rule? That was a big deal.
Azar: For me, it has to be Operation Warp Speed. …[applause] … Yeah. Thank you. That was just — I mean, and I don’t want to take the credit. I mean, it was public-private. Mark Esper, this could not have happened without the partnership of the Defense Department, and it could not have happened without Mark Esper as secretary, because — I guarantee you, I’ve dealt with a lot of SecDefs in my career — and when the secretary of defense says to you, “Alex, you have the complete power and support of the Department of Defense. You just tell me what you need.” I haven’t heard those words before. And he was a partner and his whole team a partner throughout. And when you have the muscle of the U.S. military behind you to get something done, it is miraculous what happens. I mean, we were making hundreds of millions of doses of commercial-scale vaccine in June of 2020, when we were still in phase 2 clinical trials. We were just making it at risk. So we’re pumping this stuff out. And in one of the factories, a pump goes down. The pump is on the other side of the country on a train. The U.S. military shoots out a fighter jet, it gets out there, stops the train, pulls the train over, puts it on a helicopter, gets it on the jet, zips it off to the factory. We have colonels at every single manufacturing facility, and they get this installed. We’re up and running within 24 hours. It would have taken six to nine months under normal process. But the U.S. military got that done. So that for me was like just — the other two quick, one was banning flavored e-cigarettes. We got 25% reduction in youth use of tobacco in 12 months as a result of that. And then one of the great public health victories that this country had and the world had got ignored because it got concluded in June of 2020: We had the 11th Ebola outbreak. It was in the war zone in the eastern Democratic Republic of the Congo. This was the pandemic I was really, really worried about. One-hundred seventy-four warring groups in the war zone in the eastern Congo. Got [WHO Director-General] Tedros [Adhanom Ghebreyesus] and [then-Director of the National Institute of Allergy and Infectious Diseases Anthony] Fauci and [then-CDC Director Robert] Redfield, and we went over and we went on the ground and we got that. And by June of 2020, that one got out, which was a miracle of global public health. I’m with Kathleen on that one; I think global public health is a key instrument of American power projection humanity around the world. Sorry to go so long.
Rovner: It’s OK. Your turn.
Sebelius: I think proudest is the ability to participate in the Affordable Care Act and push that over the finish line. And for me, it was a really personal journey. My father was in Congress and was one of the votes for Medicare and Medicaid to be passed, so that chunk of the puzzle. I was the insurance commissioner in Kansas when the Republican governor asked me to do the implementation of the Children’s Health Insurance Program. So I helped with that piece. I was on President [Bill] Clinton’s patient protection commission and ended up with a lot of that package in the Affordable Care Act. And then finally to work for and support and watch a president who basically said when he announced for president, “This is my priority in my first term: I want to pass a major health care bill.” And a lot of people had made that pledge. But 15 months later, there was a bill on his desk and he signed it, and we got to implement it. So that was thrilling. Yeah. And, I should tell you, then-Congressman Becerra was one of the wingmen in the House who I worked with carefully, who — there was no better vote counter than Nancy Pelosi, but by her side was this guy, part of her delegation, named Xavier Becerra, who was whipping the votes into place. So he played a key role in making sure that crossed the finish line.
Becerra: So I’m still here, so you’re going to have to —
Rovner: You can change your answer later.
Becerra: I need a bit of grace here, because I’m going to start with Warp Speed, because I bet no one here knows there’s no longer a Operation Warp Speed. It’s now called H-CORE. And the reason I’m very proud of that is because you don’t know that it’s now H-CORE. And what makes it such a good thing is that the Department of Defense no longer has any role in the protection of the American people from covid. It’s all done in-house at HHS. Everything used to be done essentially under the auspices of the Department of Defense, because they are just the folks that can get things done in 24 hours. We do that now, and it’s the operations that were begun a while back. Kathleen had them, Alex had them. Our ASPR, that’s our Preparedness and Response team, they’re doing phenomenal work, but you don’t know it, and you don’t know that H-CORE took to flight in the first year of the Biden administration. By December of 2021, Department of Defense had transferred over all those responsibilities to us, and we’ve been doing it since. But if you ask me what am I most proud of, it’s, I mean, there are more Americans today than ever in the history of this country who have the ability to pay for their own health care because they have health insurance, more than 300 million. Part of that is Obamacare; a record number, 16 and a half million Americans, get their insurance through the marketplaces, and we haven’t stopped yet. There are close to 700 million shots of covid vaccine that have gone into the arms of Americans. That’s never been done in the history of this country. Some of you are probably familiar with three digits, 988, at a time when Americans are … [applause] … 9 in 10 Americans would tell you that America is experiencing a mental health crisis, especially with our youth. And Congress got wise and said, instead of having in different parts of the country, based on region, you could call a phone number for a suicide lifeline, if you didn’t know the 10-digit number or what part of the country you were in, you were out of luck — today, all you have to do is dial 988. But as I said before, federal government doesn’t run mental health. It’s all done by the states. But President Biden is very committed to mental health. His budgets have surpassed any type of investments that have been called for by any president in history for mental health. And he was very committed to 988 to make sure it launched right. And so we have, by exponential numbers, put money into 988 to make sure every state was ready to have it launch. And so by July of 2022, we launched 988, and it is working so well that people are actually calling — actually, not just calling. We now have a text feature and a chat feature because surprise, surprise, young people prefer not to call; they actually prefer to text. And we have increased the number of Americans who are reaching out by over 2 million, which is great, but it’s also not great because it shows you how much Americans are hurting. So there’s so many things I can tell you that I feel very good about that we’re doing. We’re not done. We’re moving beyond on tobacco where Alex left. We’re now moving to ban menthol in cigarettes. Menthol cigarettes are the most popular brand of cigarettes in America. They hook you because of the menthol, and we’re moving to extract menthol. We’re moving to ban flavored cigars and cigarillos. And we may be on course to try to see if we can move to extract as much nicotine out of tobacco as possible before it becomes a product on the market for folks to smoke. So we’re doing a whole lot of things there. And obviously on vaping, e-cigarettes as well — and Dr. Califf could mention that. But I’ll say the thing I’m probably most proud of is that, out of all the government agencies in America, federal government agencies, HHS ranks No. 2 as the best place to work. And I will tell you we’re No. 2, because if we had the capacity to tell our workforce, we will fly you to the moon and back the way NASA does, we’d be No. 1. So that’s what I think I’m most proud of, is that people, as hard as we work them, still say, “Come work at HHS.”
Rovner: So all of you have mentioned these things that were really hard to do because of politics. And you’ve all talked about how some of these decisions, when they get to you, have been baked by your staff and, you know, they vetted it with every side. But I think the public feels like politics determine everything. And I think you all would like to think that policy is what helps determine most things. So, what’s the balance? How much does politics determine what gets done, and how much is it just the idea that this would be the right policy for the American public?
Azar: Mike Leavitt, who was the secretary when I was deputy secretary, he had a phrase, and I’ll probably mangle it, but it was essentially, “Facts for science, and politics for policy.” And it’s important to remember this distinction. So, facts are facts. You gather data. We are especially a data-generating agency. But on top of that are policy overlays. And there are choices that are made about how do you use those facts? What do those facts mean? What are the implications? The United States Constitution vests under Article 2 in the president of the United States to make those choices and, as his delegee, the secretary and the other appointed leaders of the department. So there’s often this notion of politicizing science, but it’s, are there facts? Facts are facts. You generate facts. But what are the implications for policymaking? And I don’t think there’s anything illegitimate — I think is completely appropriate, whether a Democratic or Republican president — that you look and you consider all kinds of factors. Because for instance, for me, I’m going to look at things very much from a public health lens as I assess things. The secretary of the treasury, the secretary of commerce, may bring a completely and important different perspective to the table that I don’t bring. And it’s completely legitimate that that gets factored on top of whatever I or other agencies bring in as fact. So I think it takes some nuance and that we often, frankly, in public discourse don’t catch nuance. Interesting. We don’t do nuance well.
Rovner: We don’t do nuance.
Sebelius: Well, I would agree with the description of the facts versus the policy. And policy does often have political flavors. I was fortunate to work for a president who said, meant, and said it over and over and over again that he would follow the science. And he did. And I had interesting political debates with people around him, on his team, about what should be done, “rewrite the guidance on this,” “do that,” “this is going to upset this group of people.” And he was very resilient and very consistent, saying, “What does the science say? What do the scientists say? That’s where we’re going,” on those areas which were really defined as giving advice to the American public on health issues, doing a variety of things. I mean, he was totally focused on listening to the science. The politics came in, as I think Secretary Azar said well, in some decisions that were brought to him, which really involved often battles between Cabinet agencies, and both were very legitimate. Again, we had pretty ferocious battles on food labeling and calorie counts and how much sodium would, should manufacturers be allowed to put in all of our manufactured goods. I’m sure many of you are aware, but, you know, American sodium levels are just skyrocketing. And it doesn’t matter what kind of salt you use at your table; it’s already baked into every loaf of bread, every pat of butter, every can of soup. And a lot of European countries have done a great job just lowering that. So the goods that are manufactured that you pick up in an EU country — Kellogg’s Corn Flakes has a third of the sodium that the Kellogg’s Corn Flakes that you get in Aspen does, just because that was a choice that those governments made. That’s a way to keep people healthy. But we would come at that through a public health perspective and argue strenuously for various kinds of limits. The Department of Agriculture, promoting farm products, supporting goods it exports, you know, not wanting to rile people up, would come in very strongly opposing a lot of those public health measures. And the president would make that call. Now, is that politics? Is it policy? Is it, you know, listening to a different lens? But he made the call and some of those battles we would win and some we would lose. But again, it’s a very legitimate role for the president to make. He’s getting input from leaders who see things through a different lens, and then he’s the ultimate decider and he would make the decision.
Becerra: So um, I’ve done politics and policy much longer than I’ve done the secretary role. And I will tell you that there is a big difference. We do do some policy, but for the most part we execute. The policy has been given to us by Congress, and to some degree the White House will help shape that policy. We have some role in policymaking because we put out guidances, and the guidance may look like it’s political or policy-driven, or we decide how much sodium might be allowed in a particular product and so forth. But for the most part, we’re executing on a policy that’s been dictated to the agencies by Congress. And I love that, because when I became AG in California, it really hit you how important it is to be able to marshal facts. And in HHS, it’s not just facts; it’s scientific facts. It is such a treat, as an attorney, to get to rely on scientific facts to push things like masking policy in the face of some hostility that went throughout the country to the point that our CDC director had to have security detail because she was getting death threats for having policies that would urge society to have masking policies for adults, for children. We do rely principally on science and the facts at HHS. Maybe folks don’t believe it, but I can put those on the table for you to take a look at. And perhaps the best example I can give you, and I don’t know if I’ll have time to connect the dots for you, because it’s a little esoteric: Title 42, which many of you got to hear about all the time in the news. Title 42 was a policy that was put in place under the Trump administration when we were in the height of the covid pandemic. We didn’t know what was causing covid, so we were trying to make sure that we protected ourselves and our borders. And so therefore, for public health reasons, we sort of closed our borders to the degree that we could, except for those who proved that they had gone through steps and so forth to be able to come in. Title 42 was used under the Trump administration, under the Biden administration to stop people from coming through our southern border. And there reached a point where, as things got better, our team said Title 42, which is health-based — it’s to stop the spread of contagion — was no longer the appropriate tool to use at the border, because we were letting people in the northern border, by plane, and all the rest. You just had to go through protocols. And so they were saying for health care reasons you go through protocols. But Title 42 is probably not the blanket way to deal with this issue, because it’s no longer simply a health care issue. We pushed really hard on that within the administration to the point where, finally, the administration said, “We’re pulling down Title 42.” Then the politics and the policy came in, from Congress saying, “Oh, how dare you take down Title 42? How dare you do that and let the flood of people come into this country?” Well, look, if you want to deal with people coming into the country, whatever way, then deal with our country’s borders through our immigration laws, not through our health care laws. Don’t try to make health care experts be the reason why you’re stopping someone from coming into this country. Stop hiding behind their skirt. And that’s where we went. And the administration took that policy as well. They took the policy. We then got sued and a court said, “No, you will not take down Title 42.” Ultimately, we think we were going to prevail in court, but ultimately, because we pulled down the public health emergency, things got better under covid, we no longer needed Title 42. But just again, to be clear, the women and men at HHS, we execute; we use the facts and the science. We don’t do politics.
Rovner: So we’ve been very serious.
Becerra: Not everybody believed me on that one.
Rovner: I know, I know. We’ve been very serious here for 50-some minutes. I want to go down the line. What’s the most fun thing you got to do as secretary or the coolest thing that you got to do as secretary?
Azar: Probably for me, it was the trip to the Congo, you know, being in the DRC, going to Uganda, going to Rwanda, flying on MONUSCO [United Nations Organization Stabilization Mission in the Democratic Republic of the Congo] U.N. peacekeeping forces; there was a Russian gunboat taking Tedros and Fauci and Redfield and me there into this war zone. I mean, it’s a once-in-a-lifetime — it’s sort of crazy — but once-in-a-lifetime thing that had impact.
Rovner: I don’t know that most people would call that fun.
Azar: I mean, it’ll be one of those great memories for life. Yeah. Yeah.
Sebelius: There were certainly some great trips and memorable experiences around health results in various parts of the world. Some martinis on the presidential balcony and looking at the Washington Monument — that’s pretty cool at night. But my, I think, personally kind of fun thing. I raised my children on “Sesame Street,” and they loved “Sesame Street” and the characters, and that was sort of part of the family routine. And so I got to go to “Sesame Street” and make a public service commercial with Elmo. I got to see Oscar’s garbage can. I met Snuffleupagus. But the Elmo commercial was to teach kids how to sneeze because, again, we were trying to spread good health habits. And so the script said — I mean, Elmo is right here and I’m here — and the script said, “OK, Elmo, we need to practice how to sneeze. So put your arm up and bend your elbow and sneeze into your arm.” And the puppet answered, “Elmo has no elbow.” That wasn’t part of the script. It was like, really? “And if Elmo does that, it will go like this: Achoo!” OK, so we flipped the script and Elmo taught me to sneeze. But that was a very memorable day to finally be on “Sesame Street.” It was very cool.
Rovner: OK, beat that.
Becerra: My team has not yet scheduled me to go on “Sesame Street,” so it’s going to be tough.
Sebelius: But just remember, Elmo has no elbows, if you get to go.
Becerra: I think probably what I will think of most is that I had had a chance to be in the White House and meet with the president in the Oval Office and the rest as a of member of Congress and so forth. When I went in, and it was because things were kind of dire with the kids at the border, and I knew I was going to get a whiplash after the meeting — it wasn’t fun at the time, but walking out, you know, it’s the kind of thing you think of, you know, “West Wing” kind of thing. You actually got the — president sat at the table, I was the guy that sat across from him. Everybody else was to the sides. You know, for a kid who was the first in his family to go to college, Dad didn’t get past the sixth grade, Mom didn’t come here till she was 18, when she came from Guadalajara, Jalisco, Mexico. It was pretty cool.
Rovner: So I could go on all night, but I think we’re not supposed to. So I want to ask you all one last question, which is, regardless of party affiliation, what is one piece of advice you would give to a successor as HHS secretary? Why don’t you start?
Becerra: Gosh, don’t start with me because I’m still there, so —
Rovner: All right.
Azar: I’m going to plagiarize and I’m going to give you the advice I wish Donna Shalala had given me before I took the job. But I would give it to any successor, which: She told me, “Do not take the job unless you have authority over personnel. Refuse to take the job unless you have control over who’s working, because people is policy and you have to be able to control the ethics, the tone, the culture of the organization. And people are that, and you need to have that authority.” And ever really since the Reagan administration, the Office of Presidential Personnel has just been this vortex of power that controls all political appointees at Cabinet departments. And I think if the president really wants you, you need to strike a deal that says, at a minimum, I’ve got veto or firing rights.
Sebelius: I think my advice would be the advice you give to a lot of employees who work in the private sector or public sector is, Make sure you’re aligned with the mission of the CEO, so in this case the president. I mean, don’t take the job because it’s cool and you’ll be a Cabinet member, because then it will be miserable. And with HHS, recognize the incredible assets across this agency. It is the most dazzling workforce I’ve ever had an opportunity to be with — the brightest people of all shapes, sizes, backgrounds, who taught me so much every day — and just cherish and relish your opportunity to be there, even for a short period of time. It’s miraculous.
Becerra: So I’d agree with Alex: Assemble your team. And it really is, because Kathleen mentioned it, it’s a very small group that actually you get to bring in, or even the administration gets to bring in, because most of the folks are civil service, so it’s only a fraction of the people that are going to be new. But your inner circle, the team that’s going to sort of be there and guide you and tell you what’s truth, they’ve got to be your team, because someone’s got to have your back. But I’d also say, know your reach, because as Kathleen said, this is not the Azar administration or the Sebelius administration, the Becerra administration. It’s the administration of the guy who got elected. And at the end of the day, the president gets to make the call. So as much as you may want to do something, you’ve got to know your reach.
Rovner: Well, I want to thank you all. I hope the audience had half as much fun as I did doing this. Let’s do it again next year. Thank you, all. OK, that’s our show for this week. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left a review; that helps other people find us, too. Special thanks, as always, and particularly this week, to our producer, Francis Ying. Also as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me. I’m @jrovner. We’ll be back in your feed from Washington next week. Until then, be healthy.
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KFF Health News' 'What the Health?': More Medicaid Messiness
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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.
Federal officials have instructed at least 30 states to reinstate Medicaid and Children’s Health Insurance Program coverage for half a million people, including children, after an errant computer program wrongly determined they were no longer eligible. It’s just the latest hiccup in the yearlong effort to redetermine the eligibility of beneficiaries now that the program’s pandemic-era expansion has expired.
Meanwhile, the federal government is on the verge of a shutdown, as a small band of House Republicans resists even a short-term spending measure to keep the lights on starting Oct. 1. Most of the largest federal health programs, including Medicare, have other sources of funding and would not be dramatically impacted — at least at first. But nearly half of all employees at the Department of Health and Human Services would be furloughed, compromising how just about everything runs there.
This week’s panelists are Julie Rovner of KFF Health News, Rachel Roubein of The Washington Post, Sandhya Raman of CQ Roll Call, and Sarah Karlin-Smith of Pink Sheet.
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Among the takeaways from this week’s episode:
- Officials in North Carolina announced the state will expand its Medicaid program starting on Dec. 1, granting thousands of low-income residents access to health coverage. With North Carolina’s change, just 10 states remain that have not expanded the program — yet, considering those states have resisted even as the federal government has offered pandemic-era and other incentives, it is unlikely more will follow for the foreseeable future.
- The federal government revealed that nearly half a million individuals — including children — in at least 30 states were wrongly stripped of their health coverage under the Medicaid unwinding. The announcement emphasizes the tight-lipped approach state and federal officials have taken to discussing the in-progress effort, though some Democrats in Congress have not been so hesitant to criticize.
- The White House is pointing to the possible effects of a government shutdown on health programs, including problems enrolling new patients in clinical trials at the National Institutes of Health and conducting food safety inspections at the FDA.
- Americans are grappling with an uptick in covid cases, as the Biden administration announced a new round of free test kits available by mail. But trouble accessing the updated vaccine and questions about masking are illuminating the challenges of responding in the absence of a more organized government effort.
- And the Biden administration is angling to address health costs at the executive level. The White House took its first step last week toward banning medical debt from credit scores, as the Federal Trade Commission filed a lawsuit to target private equity’s involvement in health care.
- Plus, the White House announced the creation of its first Office of Gun Violence Prevention, headed by Vice President Kamala Harris.
Also this week, Rovner interviews KFF Health News’ Samantha Liss, who reported and wrote the latest KFF Health News-NPR “Bill of the Month,” about a hospital bill that followed a deceased patient’s family for more than a year. If you have an outrageous or infuriating medical bill you’d like to send us, you can do that here.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week they think you should read, too:
Julie Rovner: JAMA Internal Medicine’s “Comparison of Hospital Online Price and Telephone Price for Shoppable Services,” by Merina Thomas, James Flaherty, Jiefei Wang, et al.
Sarah Karlin-Smith: The Los Angeles Times’ “California Workers Who Cut Countertops Are Dying of an Incurable Disease,” by Emily Alpert Reyes and Cindy Carcamo.
Rachel Roubein: KFF Health News’ “A Decades-Long Drop in Teen Births Is Slowing, and Advocates Worry a Reversal Is Coming,” by Catherine Sweeney.
Sandhya Raman: NPR’s “1 in 4 Inmate Deaths Happen in the Same Federal Prison. Why?” by Meg Anderson.
Also mentioned in this week’s episode:
- KFF Health News’ “Diagnosis: Debt,” by Noam N. Levey and KFF Health News, NPR, and CBS staff.
- The New York Times’ “In Hospitals, Viruses Are Everywhere. Masks Are Not,” by Apoorva Mandavilli.
click to open the transcript
Transcript: More Medicaid Messiness
KFF Health News’ ‘What the Health?’Episode Title: More Medicaid MessinessEpisode Number: 316Published: Sept. 27, 2023
[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 early this week, on Wednesday, Sept. 27, at 10 a.m. As always, news happens fast and things might’ve changed by the time you hear this, so here we go.
We are joined today via video conference by Rachel Roubein of The Washington Post.
Rachel Roubein: Good morning. Thanks for having me.
Rovner: Sandhya Raman of CQ Roll Call.
Sandhya Raman: Good morning.
Rovner: And Sarah Karlin-Smith of the Pink Sheet.
Sarah Karlin-Smith: Hi, everybody.
Rovner: Later in this episode we’ll have my KFF Health News-NPR “Bill of the Month” interview with Samantha Liss. This month’s bill is literally one that followed a patient to his family after his death. But first, the news. I want to start with Medicaid this week. North Carolina, which approved but didn’t fund its Medicaid expansion earlier this year, approved a budget this week that will launch the expansion starting Dec. 1. That leaves just 10 states that have still not expanded the program to, mostly, low-income adults, since the Affordable Care Act made it possible in, checks notes, 2014. Any other holdout states on the horizon? Florida is a possibility, right, Rachel?
Roubein: Yes. There’s only technically three states that can do ballot measures. Now North Carolina, I believe, was the first state to actually pass through the legislature since Virginia in 2018. A lot of the most recent states, seven conservative-leaning states, instead pursued the ballot measure path. In Florida, advocates have been eyeing a 2026 ballot measure. But the one issue in Florida is that they need a 60% threshold to pass any constitutional amendment, so that is pretty, pretty high and would take a lot of voter support.
Rovner: And they would need a constitutional amendment to expand Medicaid?
Roubein: A lot of the states have been going the constitutional amendment route in terms of Medicaid in recent years. Because what they found was some legislatures would come back and try and change it, but if it’s a constitutional amendment, they weren’t able to do that. But a lot of the holdout states don’t have ballot measure processes, where they could do this — like Alabama, Georgia, etc.
Raman: Kind of just echoing Rachel that this one has been interesting just because it had come through the legislature. And even with North Carolina, it’s been something that we’ve been eyeing for a few years, and that they’d gone a little bit of the way, a little bit of the way a few times. And it was kind of the kind of gettable one within the ones that hadn’t expanded. And the ones we have left, there’s just really not been much progress at all.
Rovner: I would say North Carolina, like Virginia, had a Democratic governor that ran on this and a Republican legislature, or a largely Republican legislature, hence the continuing standoff. It took both states a long time to get to where they had been trying to go. And you’re saying the rest of the states are not split like that?
Raman: Yeah, I think it’ll be a much more difficult hill to climb, especially when, in the past, we had more incentives to expand with some of the previous covid relief laws, and they still didn’t bite. So it’s going to be more difficult to get those.
Rovner: No one’s holding their breath for Texas to expand. Anyway, while North Carolina will soon start adding people to its Medicaid rolls, the rest of the states are shedding enrollees who gained coverage during the pandemic but may no longer be eligible. And that unwinding has been bumpy to say the least. The latest bump came last week when the Department of Health and Human Services revealed that more than half a million people, mostly children, had their coverage wrongly terminated by as many as 30 states. It seems a computer program failed to note that even if a parent’s income was now too high to qualify, that same income could still leave their children eligible. Yet the entire family was being kicked off because of the way the structure of the program worked. I think the big question here is not that this happened, but that it wasn’t noticed sooner. It should have been obvious — children’s eligibility for Medicaid has been higher than adults since at least the 1980s. This unwinding has been going on since this spring. How is this only being discovered now? It’s September. It’s the end of September.
Roubein: Yeah. I mean, this was something advocates who have been closely watching this have been ringing the alarm bells for a while, and then it took time. CMS [the Centers for Medicare & Medicaid Services] had put something out, I believe it was roughly two weeks before they actually then had the roughly half a million children regain coverage — they had put out a, “OK, well, we’re exploring which states.” And lots of reporters were like, “OK, well which state is this an issue?” So yeah, the process seemed like it took some time here.
Rovner: I know CMS has been super careful. I mean, I think they’re trying not to politicize this, because they’ve been very careful not to name states, and in many cases who they know have been wrongly dropping people. I guess they’re trying to keep it as apolitical as possible, but I think there are now some advocates who worry that maybe CMS is being a little too cautious.
Karlin-Smith: Yeah, I think from the other side too, if you’ve talked to state officials, they’re also trying to be really cautious and not criticize CMS. So it seems like both sides are not wanting to go there. But I mean some Democrats in Congress have been critical of how the effort has gone.
Rovner: Yeah. And of course, if the government shuts down, as seems likely at the end of this week, that’s not going to make this whole process any easier, right? The states will still get to do what the states are doing. Their shutdown efforts, or their re-qualification efforts, are not federally funded, but the people at CMS are.
Karlin-Smith: Yeah, that’ll just throw another thorn in this as we’re getting very, very likely headed towards a shutdown at this point on the 27th. So I think that’ll be another barrier for them regardless. And I mean, most CMS money isn’t even affected by the yearly budget anyways because it’s mandatory funding, but that’ll be a barrier for sure.
Rovner: So, speaking of the government shutdown, it still seems more likely than not that Congress will fail to pass either any of the 12 regular spending bills or a temporary measure to keep the lights on when the fiscal year ends at midnight Sunday. That would lead to the biggest federal shutdown since 2013 when, fun fact, the shutdown was an attempt to delay the rollout of the Affordable Care Act. What happens to health programs if the government closes? It’s kind of a big confusing mess, isn’t it?
Roubein: Yeah, well, what we know that would definitely continue and in the short term is Medicare and Medicaid, Obamacare’s federal insurance marketplace. Medicaid has funding for at least the next three months, and there’s research developing vaccines and therapeutics that HHS, they put out their kind of contingency “What happens if there’s a shutdown?” plan. But there’s some things that the White House and others are kind of trying to point to that would be impacted, like the National Institutes of Health may not be able to enroll new patients in clinical trials, the FDA may need to delay some food safety inspections, etc.
Rovner: Sarah, I actually forgot because, also fun fact, the FDA is not funded through the rest of the spending bill that includes the Department of Health and Human Services. It’s funded through the agriculture bill. So even though HHS wasn’t part of the last shutdown in 2018 and 2019, because the HHS funding bill had already gone through, the FDA was sort of involved, right?
Karlin-Smith: Right. So FDA is lumped with the USDA, the Agriculture Department, for the purposes of congressional funding, which is always fun for a health reporter who has to follow both of those bills. But FDA is always kind of a unique one with shutdown, because so much of their funding now is user fees, particularly for specific sections. So the tobacco part of FDA is almost 100% funded by user fees, so they’re not really impacted by a shutdown. Similarly, a lot of drug, medical device applications, and so forth also are totally funded by user fees, so their reviews keep going. That said, the way user fees are, they’re really designated to specific activities.
So, where there isn’t user fees and it’s not considered a critical kind of public health threat, things do shut down, like Rachel mentioned: a lot of food work and inspections, and even on the drug and medical device side, some activities that are related that you might think would continue don’t get funded.
Rovner: Sandhya, is there any possibility that this won’t happen? And that if it does happen, that it will get resolved anytime soon?
Raman: At this point, I don’t think that we can navigate it. So last night, the Senate put out their bipartisan proposal for a continuing resolution that you would attach as an amendment to the FAA, the Federal Aviation [Administration] reauthorization. And so that would temporarily extend a lot of the health programs through Nov. 17. The issue is that it’s not something that if they are able to pass that this week, they’d still have to go to the House. And the House has been pretty adamant that they want their own plan and that the CR that they were interested in had a lot more immigration measures, and things there.
And the House right now has been busy attempting to pass this week four of the 12 appropriations bills. And even if they finished the four that they did, that they have on their plate, that would still mean going to the Senate. And Biden has said he would veto those, and it’s still not the 12. So at this point, it is almost impossible for us to not at least see something short-term. But whether or not that’s long-term is I think a question mark in all the folks that I have been talking to about this right now.
Rovner: Yeah, we will know soon enough what’s going to happen. Well, meanwhile, because there’s not enough already going on, covid is back. Well, that depends how you define back. But there’s a lot more covid going around than there was, enough so that the federal government has announced a new round of free tests by mail. And there’s an updated covid vaccine — I think we’re not supposed to call it a booster — but its rollout has been bumpy. And this time it’s not the government’s fault. That’s because this year the vaccine is being distributed and paid for by mostly private insurance. And while lots of people probably won’t bother to get vaccinated this fall, the people who do want the vaccine are having trouble getting it. What’s happening? And how were insurers and providers not ready for this? We’d been hearing the updated vaccines would be available in mid-September for months, Sarah. I mean they really literally weren’t ready.
Karlin-Smith: Yeah. I mean, it’s not really clear why they weren’t ready, other than perhaps they felt they didn’t need to be, to some degree. I mean, normally, I know I was reading actually because we’ve also recently gotten RSV [respiratory syncytial virus] vaccine approvals — normally they actually have almost like a year, I think, to kind of add vaccines to plans and schedules and so forth, and pandemic covid-related laws really shortened the time for covid. So they should have been prepared and ready. They knew this was coming. And people are going to pharmacies, or going to a doctor’s appointment, and they’re being told, “Well, we can give you the vaccine, but your insurance plan isn’t set up to cover it yet, even though technically you should be.” There seems like there’s also been lots of distribution issues where again, people are going to sites where they booked appointments, and they’re saying, “Oh, actually we ran out.” They’re trying another site. They’ve run out.
So, it’s sort of giving people a sense of the difference of what happens when sort of the government shepherds an effort and everybody — things are a bit simplified, because you don’t have to think about which site does your insurance cover. There is a program for people who don’t have insurance now who can get the vaccine for free, but again, you’re more limited in where you can go. There’s not these big free clinics; that’s really impacting childhood vaccinations, because, again, a lot of children can’t get vaccinated at the pharmacy. So I think people are being reminded of what normal looked like pre-covid, and they’re realizing maybe we didn’t like this so much after all.
Rovner: Yeah, it’s not so efficient either. All the people who said, “Oh, the private sector could do this so much more efficiently than the government.” And it’s like, we’re ending up with pretty much the same issues, which is the people who really want the vaccine are chasing around and not finding it. And I know HHS Secretary Becerra went and had this event at a D.C. pharmacy where he was going to get his vaccine. And I think the event was intended to encourage people to go get vaccinated, but it happened right at the time when the big front surge of people who wanted to get vaccinated couldn’t find the vaccine.
Karlin-Smith: I think that’s a big concern because we’ve had such low uptake of booster or additional covid shots over the past couple of years. So the people who are sort of the most go-getters, the ones who really want the shots, are having trouble and feeling a bit defeated. What does that mean for the people that are less motivated to get it, who may not make a second or third attempt if it’s not easy? We sort of know, and I think public health folks kind of beat the drum, that sort of just meeting people where they are, making it easy, easy, easy, is really how you get these things done. So it’s hard to see how we can improve uptake this year when it’s become more complicated, which I think is going to be a big problem moving forward.
Rovner: Yeah. Right. And clearly these are issues that will be ironed out probably in the next couple of weeks. But I think what people are going to remember, who are less motivated to go get their vaccines, is, “Oh my God, these people I know tried to get it and it took them weeks. And they showed up for their appointment and they couldn’t get it.” And it’s like, “It was just too much trouble and I can’t deal with it.” And there’s also, I think you mentioned that there’s an issue with kids who are too young to get the vaccine too, right?
Karlin-Smith: Right. Still, I think people forget that you have to be 6 months to get the vaccine. If you’re under 3, you basically cannot get it in a pharmacy, so you have to get it in a doctor’s office. But a lot of people are reporting online their doctor’s office sort of stopped providing covid vaccines. So they’re having trouble just finding where to go. It seems like the distribution of shots for younger children has also been a bit slower as well. And again, this is a population where just even primary series uptake has been a problem. And people are in this weird gap now where, if you can’t get access to the new covid vaccine but your kid is eligible, the old vaccine isn’t available.
So you’re sort of in this gap where your kid might not have had any opportunity yet to get a covid vaccine, and there’s nothing for them. I think we forget sometimes that there are lots of groups of people that are still very vulnerable to this virus — including newborn babies who haven’t been exposed at all, and haven’t gotten a chance to get vaccinated.
Rovner: Yeah. So this is obviously still something that we need to continue to look at. Well, meanwhile, mask mandates are making a comeback, albeit a very small one. And they are not going over well. I’ve personally been wearing a mask lately because I’m traveling later this week and next, and don’t want to get sick, at least not in advance. But masks are, if anything, even more controversial and political than they were during the height of the pandemic. Does public health have any ideas that could help reverse that trend? Or are there any other things we could do? I’ve seen some plaintiff complaints that we’ve not done enough about ventilation. That could be something where it could help, even if people won’t or don’t want to wear masks. I mean, I’m surprised that vaccination is still pretty much our only defense.
Karlin-Smith: I think with masks, one thing that’s made it hard for different parts of the health system and lower-level kind of state public health departments to deal with masks is that the CDC [Centers for Disease Control and Prevention] recommendations around masking are pretty loose at this point. So The New York Times had a good article about hospitals and masking, and the kind of guidance around triggers they’ve given them are so vague. They kind of are left to make their own decisions. The CDC actually still really hasn’t emphasized the value of KN95 and N95 respirators over surgical masks. So I think it becomes really hard for those lower-level institutions to sort of push for something that is kind of controversial politically. And a lot of people are just tired of it when they don’t have the support of those bigger institutions saying it. And some of just even figuring out levels of the virus and when that should trigger masking.
It’s much harder to track nowadays because so much of our systems and data reporting is off. So, we have this sense we’re in somewhat of a surge now. Hospitalizations are up and so forth. But again, it’s a lot easier for people to make these decisions and figure out when to pull triggers when you have clear data that says, “This is what’s going on now.” And to some extent we’re … again, there’s a lot of evidence that points to a lot of covid going around now, but we don’t have that sort of hard data that makes it a lot easier for people to justify policy choices.
Raman: You just brought up ventilation and it took time, one, for some scientists to realize that covid is also spread through ultra-tiny particles. But it also took, after that, a while for the White House to pivot its strategy to stress ventilation measures in addition to masks, and face covering. So a lot of places are still kind of behind on having better ventilation in an office, or kind of wherever you’re going.
Rovner: Yeah, I mean, one would think that improving ventilation in schools would improve, not only not spreading covid, but not spreading all of the respiratory viruses that keep kids out of school and that make everybody sick during the winter, during the school year.
Roubein: I was going to piggyback on something Sarah said, which was about how the CDC doesn’t have clear benchmarks on when there should be a guideline for what is high transmission in the hospital for them to reinstate a mask mandate or whatever. But there’s also nuance to consider there. Within that there’s, is there a partial masking rule? Which is like: Does the health care staff have to wear them versus the patients? And does that have enough benefit on its own if it’s only required to one versus the other? I mean, I know that a lot of folks have called for more strict rules with that, but then there’s also the folks that are worried about the backlashes. This has gotten so politicized, how many different medical providers have talked about angst at them, attacks at them, over the polarization of covid? So there’s so many things that are intertwined there that it’s tough to institute something.
Karlin-Smith: I think the other thing is we keep forgetting this is not all about covid. We’ve learned a lot of lessons about public health that could be applicable, like you mentioned in schools, beyond covid. So if you’re in the emergency room, because you have cancer and you need to see a doctor right away. And you’re sitting next to somebody with RSV or the flu, it would also be beneficial to have that patient wearing a mask because if you have cancer, you do not need to add one of these infectious diseases on top of it. So it’s just been interesting, I think, for me to watch because it seemed like at different points in this crisis, we were sort of learning things beyond covid for how it could improve our health care system and public health. But for the most part, it seems like we’ve just kind of gone back to the old ways without really thinking about what we could incorporate from this crisis that would be beneficial in the future.
Rovner: I feel like we’ve lost the “public” in public health. That everybody is sort of, it’s every individual for him or herself and the heck with everybody else. Which is exactly the opposite of how public health is supposed to work. But perhaps we will bounce back. Well, moving on. The Biden administration, via the Consumer Financial Protection Bureau, the CFPB, took the first steps last week to ban medical debt from credit scores, which would be a huge step for potentially tens of millions of Americans whose credit scores are currently affected by medical debt. Last year, the three major credit bureaus, Equifax, Experian, and TransUnion, agreed not to include medical debt that had been paid off, or was under $500 on their credit reports. But that still leaves lots and lots of people with depressed scores that make it more expensive for them to buy houses, or rent an apartment, or even in some cases to get a job. This is a really big deal if medical debt is going to be removed from people’s credit reports, isn’t it?
Roubein: Yeah. I think that was an interesting move when they announced that this week. Because the CFPB had mentioned that in a report they did last year, 20% of Americans have said that they had medical debt. And it doesn’t necessarily appear on all credit reports, but like you said, it can. And having that financial stress while going through a health crisis, or someone in your family going through a health crisis, is layers upon layers of difficulty. And they had also said in their report that medical billing data is not an accurate indicator of whether or not you’ll repay that debt compared to other types of credit. And it also has the layers of insurance disputes, and medical billing errors, and all that sort of thing. So this proposal that they have ends up being finalized as a rule, it could be a big deal. Because some states have been trying to do this on a state-by-state level, but still in pretty early stages in terms of a lot of states being on board. So this can be a big thing for a fifth of people.
Rovner: Yeah, many people. I’m going to give a shout-out here to my KFF Health News colleague Noam Levey, who’s done an amazing project on all of this, and I think helped sort of push this along. Well, while we are on the subject of the Biden administration and money in health care, the Federal Trade Commission is suing a private equity-backed doctors group, U.S. Anesthesia Partners, charging anti-competitive behavior, that it’s driving up the price of anesthesia services by consolidating all the big anesthesiology practices in Texas, among other things. FTC Chair Lina Khan said the agency “will continue to scrutinize and challenge serial acquisitions roll-ups and other stealth consolidation schemes that unlawfully undermine fair competition and harm the American public.” This case is also significant because the FTC is suing not just the anesthesia company, but the private equity firm that backs it, Welsh, Carson, Anderson & Stowe, which is one of the big private equity firms in health care. Is this the shot across the bow for private equity and health care that a lot of people have been waiting for? I mean, we’ve been talking about private equity and health care for three or four years now.
Karlin-Smith: I think that’s what the FTC is hoping for. They’re saying not just that we’re going after anti-competitive practices in health care, that, I think, they’re making a clear statement that they’re going after this particular type of funder, which we’ve seen has proliferated around the system. And I think this week there was a report from the government showing that CMS can’t even track all of the private equity ownership of nursing homes. So we know this isn’t the only place where doctors’ practices being bought up by private equity has been seen as potentially problematic. So this has been a very sort of activist, I think, aggressive FTC in health care in general, and in a number of different sectors. So I think they’re ready to deliberate, with their actions and warnings.
Rovner: Yeah, it’s interesting. I mean, we mostly think, those of us who have followed the FTC in healthcare, which gets pretty nerdy right there, usually think of big hospital groups trying to consolidate, or insurers trying to consolidate these huge mega-mergers. But what’s been happening a lot is these private equity companies have come in and bought up physician practices. And therefore they become the only providers of anesthesia, or the only providers of emergency care, or the only providers of kidney dialysis, or the only providers of nursing homes, and therefore they can set the prices. And those are not the level of deals that tend to come before the FTC. So I feel like this is the FTC saying, “See you little people that are doing big things, we’re coming for you too.” Do we think this might dampen private equity’s enthusiasm? Or is this just going to be a long-drawn-out struggle?
Roubein: I could see it being more of a long-drawn-out struggle because even if they’re showing it as an example, there’s just so many ways that this has been done in so many kind of sectors as you’ve seen. So I think it remains to be seen further down the line as this might happen in a few different ways to a few different folks, and how that kind of plays out there. But it might take some time to get to that stage.
Karlin-Smith: I was going to say it’s always worth also thinking about just the size and budget of the FTC in comparison to the amount of private actors like this throughout the health system. So I mean, I think that’s one reason sometimes why they do try and kind of use that grandstanding symbolic messaging, because they can’t go after every bad actor through that formal process. So they have to do the signaling in different ways.
Raman: I think probably as we’ve all learned as health reporters, it takes a really long time for there to be change in the health care system.
Rovner: And I was just going to say, one thing we know about people who are in health care to make money is that they are very creative in finding ways to do it. So whatever the rules are, they’re going to find ways around them and we will just sort of keep playing this cat and mouse for a while. All right, well finally this week, a story that probably should have gotten more attention. The White House last week announced creation of the first-ever Office of Gun Violence Prevention to be headed by Vice President Kamala Harris. Its role will be to help implement the very limited gun regulation passed by Congress in 2022, and to coordinate other administration efforts to curb gun violence. I know that this is mostly for show, but sometimes don’t you really have to elevate an issue like this to get people to pay attention, to point out that maybe you’re trying to do something? Talk about things that have been hard for the government to do over the last couple of decades.
Raman: It took Congress a long time to then pass a new gun package, which the shooting in Uvalde last year ended up catalyzing. And Congress actually got something done, which was more limited than some gun safety advocates wanted. But it does take a lot to get gun safety reform across the finish line.
Rovner: I know. I mean, it’s one of those issues that the public really, really seems to care about, and that the government really, really, really has trouble doing. I’ve been covering this so long, I remember when they first banned gun violence research at HHS back in the mid-1990s. That’s how far back I go, that they were actually doing it. And the gun lobby said, “No, no, no, no, no. We don’t really want these studies that say that if you have a gun in the house, it’s more likely to injure somebody, and not necessarily the bad guy.” They were very unhappy, and it took until three or four years ago for that to be allowed to be funded. So maybe the idea that they’re elevating this somewhat, to at least wave to the public and say, “We’re trying. We’re fighting hard. We’re not getting very far, but we’re definitely trying.” So I guess we will see how that comes out.
All right, well that is this week’s news. Now, we will play my “Bill of the Month” interview with Sam Liss, and then we’ll come back with our extra credits. I am pleased to welcome to the podcast my KFF Health News colleague Samantha Liss, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” installment. Welcome.
Liss: Hi.
Rovner: This month’s bill involves a patient who died in the hospital, right? Tell them who he was, what he was sick with, and about his family.
Liss: Yeah. So Kent Reynolds died after a lengthy hospital stay in February of 2022. He was actually discharged after complications from colon cancer, and died in his home. And his widow, Eloise Reynolds, was left with a series of complicated hospital bills, and she reached out to us seeking help after she couldn’t figure them out. And her and Kent were married for just shy of 34 years. They lived outside of St. Louis and they have two adult kids.
Rovner: So Eloise Reynolds received what she assumed was the final hospital bill after her husband died, which she paid, right?
Liss: Yeah, she did. She paid what she thought was the final bill for $823, but a year later she received another bill for $1,100. And she was confused as to why she owed it. And no one could really give her a sufficient answer when she reached out to the hospital system, or the insurance company.
Rovner: Can a hospital even send you a bill a year after you’ve already paid them?
Liss: You know what, after looking into this, we learned that yeah, they actually can. There’s not much in the way that stops them from coming after you, demanding more money, months, or even years later.
Rovner: So this was obviously part of a dispute between the insurance company and the hospital. What became of the second bill, the year-later bill?
Liss: Yeah. After Eloise Reynolds took out a yardstick and went line by line through each charge and she couldn’t find a discrepancy or anything that had changed, she reached out to KFF Health News for help. And she was still skeptical about the bill and didn’t want to pay it. And so when we reached out to the health system, they said, “Actually, you know what? This is a clerical error. She does not owe this money.” And it sort of left her even more frustrated, because as she explained to us, she says, “I think a lot of people would’ve ended up paying this additional amount.”
Rovner: So what’s the takeaway here? What do you do if you suddenly get a bill that comes, what seems, out of nowhere?
Liss: The experts we talked to said Eloise did everything right. She was skeptical. She compared, most importantly, the bills that she was getting from the hospital system against the EOBs that she was getting from her insurance company.
Rovner: The explanation of benefits form.
Liss: That’s right. The explanation of benefits. And she was comparing those two against one another, to help guide her on what she should be doing. And because those were different between the two of them, she was left even more confused. I think folks that we spoke to said, “Yeah, she did the right thing by pushing back and demanding some explanations.”
Rovner: So I guess the ultimate lesson here is, if you can’t get satisfaction, you can always write to us.
Liss: Yeah, I hate to say that in a way, because that’s a hard solution to scale for most folks. But yeah, I mean, I think it points to just how confusing our health care system is. Eloise seemed to be a pretty savvy health care consumer, and she even couldn’t figure it out. And she was pretty tenacious in her pursuit of making phone calls to both the insurance company and the hospital system. And I think when she couldn’t figure that out, and she finally turned to us asking for help.
Rovner: So well, another lesson learned. Samantha Liss, thank you very much for joining us.
Liss: Thanks.
Rovner: Hey, “What the Health?” listeners, you already know that few things in health care are ever simple. So, if you like our show, I recommend you also listen to “Tradeoffs,” a podcast that goes even deeper into our costly, complicated, and often counterintuitive health care system. Hosted by longtime health care journalist and friend Dan Gorenstein, “Tradeoffs” digs into the evidence and research data behind health care policies and tells the stories of real people impacted by decisions made in C-suites, doctors’ offices, and even Congress. Subscribe wherever you listen to your podcasts.
OK, we’re 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. Sarah, you were the first to choose this week, so you get to go first.
Karlin-Smith: Sure. I looked at a story in the Los Angeles Times, “California Workers Who Cut Countertops Are Dying of an Incurable Disease,” by Emily Alpert Reyes and Cindy Carcamo. Hopefully I didn’t mispronounce her name. They wrote a really fascinating but sad story about people working in an industry where they’re cutting engineered stone countertops for people’s kitchens and so forth. And because of the materials in this engineered product, they’re inhaling particles that is basically giving people at a very young age incurable and deadly lung disease. And it’s an interesting public health story about sort of the lack of protection in place for some of the most vulnerable workers. It seems like this industry is often comprised of immigrant workers. Some who kind of essentially go to … outside a Home Depot, the story suggests, or something like that and kind of get hired for day labor.
So they just don’t have the kind of power to sort of advocate for protections for themselves. And it’s just also an interesting story to think about, as consumers I think people are not always aware of the costs of the products they’re choosing. And how that then translates back into labor, and the health of the people producing it. So, really fascinating, sad piece.
Rovner: Another product that you have to sort of … I remember when they first were having the stories about the dust in microwave popcorn injuring people. Sandhya, why don’t you go next?
Raman: So my extra credit this week is from NPR and it’s by Meg Anderson. And it’s called “1 in 4 Inmate Deaths Happen in the Same Federal Prison. Why?” This is really interesting. It’s an investigation that looks at the deaths of individuals who died either while serving in federal prison or right after. And they looked at some of the Bureau of Prisons data, and it showed that 4,950 people had died in custody over the past decade. But more than a quarter of them were all in one correctional facility in Butner, North Carolina. And the investigation found out that the patients here and nationwide are dying at a higher rate, and the incarcerated folks are not getting care for serious illnesses — or very delayed care, until it’s too late. And the Butner facility has a medical center, but a lot of times the inmates are being transferred there when it was already too late. And then it’s really sad the number of deaths is just increasing. And just, what can be done to alleviate them?
Rovner: It was a really interesting story. Rachel.
Roubein: My extra credit, the headline is “A Decades-Long Drop in Teen Births Is Slowing, and Advocates Worry a Reversal Is Coming,” by Catherine Sweeney from WPLN, in partnership with KFF Health News. And she writes about the national teen birth rate and how it’s declined dramatically over the past three decades. And that, essentially, it’s still dropping, but preliminary data released in June from the CDC shows that that descent may be slowing. And Catherine had talked to doctors and other service providers and advocates, who essentially expressed concern that the full CDC dataset release later this year can show a rise in teen births, particularly in Southern states. And she talked to experts who pointed to several factors here, including the Supreme Court’s decision to overturn Roe v. Wade, intensifying political pushback against sex education programs, and the impact of the pandemic on youth mental health.
Rovner: Yeah. There’ve been so many stories about the decline in teen birth, which seemed mostly attributable to them being able to get contraception. To get teens not to have sex was less successful than getting teens to have safer sex. So we’ll see if that tide is turning. Well, I’m still on the subject of health costs this week. My story is a study from JAMA Internal Medicine that was conducted in part by Shark Tank panelist Mark Cuban, for whom health price transparency has become something of a crusade. This study is of a representative sample of 60 hospitals of different types conducted by researchers from the University of Texas. And it assessed whether the online prices posted for two common procedures, vaginal childbirth and a brain MRI, were the same as the prices given when a consumer called to ask what the price would be. And surprise. Mostly they were not. And often the differences were very large. In fact, to quote from the study, “For vaginal childbirth, there were five hospitals with online prices that were greater than $20,000, but telephone prices of less than $10,000. The survey was done in the summer of 2022, which was a year and a half after hospitals were required to post their prices online.” At some point, you have to wonder if anything is going to work to help patients sort out the prices that they are being charged for their health care. Really eye-opening study.
All right, that is our show for this week. 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 amazing engineer, Francis Ying. Also, 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. Sarah.
Karlin-Smith: I’m @SarahKarlin, or @sarahkarlin-smith.
Rovner: Sandhya.
Raman: @SandhyaWrites
Rovner: Rachel.
Roubein: @rachel_roubein
Rovner: We will be back in your feed next week. Until then, be healthy.
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KFF Health News' 'What the Health?': Countdown to Shutdown
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Julie Rovner
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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.
Health and other federal programs are at risk of shutting down, at least temporarily, as Congress races toward the Oct. 1 start of the fiscal year without having passed any of its 12 annual appropriations bills. A small band of conservative House Republicans are refusing to approve spending bills unless domestic spending is cut beyond levels agreed to in May.
Meanwhile, former President Donald Trump roils the GOP presidential primary field by vowing to please both sides in the divisive abortion debate.
This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Rachel Cohrs of Stat News, and Tami Luhby of CNN.
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Alice Miranda Ollstein
Politico
Rachel Cohrs
Stat News
Tami Luhby
CNN
Among the takeaways from this week’s episode:
- The odds of a government shutdown over spending levels are rising. While entitlement programs like Medicare would be largely spared, past shutdowns have shown that closing the federal government hobbles things Americans rely on, like food safety inspections and air travel.
- In Congress, the discord isn’t limited to spending bills. A House bill to increase price transparency in health care melted down before a vote this week, demonstrating again how hard it is to take on the hospital industry. Legislation on how pharmacy benefit managers operate is also in disarray, though its projected government savings means it could resurface as part of a spending deal before the end of the year.
- On the Senate side, legislation intended to strengthen primary care is teetering under Bernie Sanders’ stewardship — in large part over questions about how to pay for it. Also, this week Democrats broke Alabama Republican Sen. Tommy Tuberville’s abortion-related blockade of military promotions (kind of), going around him procedurally to confirm the new chair of the Joint Chiefs of Staff.
- And some Republicans are breaking with abortion opponents and mobilizing in support of legislation to renew the United States President’s Emergency Plan for AIDS Relief — including the former president who spearheaded the program, George W. Bush. Meanwhile, polling shows President Joe Biden is struggling to claim credit for the new Medicare drug negotiation program.
- And speaking of past presidents, former President Donald Trump gave NBC an interview over the weekend in which he offered a muddled stance on abortion. Vowing to settle the long, inflamed debate over the procedure — among other things — Trump’s comments were strikingly general election-focused for someone who has yet to win his party’s nomination.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: The Washington Post’s “Inside the Gold Rush to Sell Cheaper Imitations of Ozempic,” by Daniel Gilbert.
Alice Miranda Ollstein: Politico’s “The Anti-Vaccine Movement Is on the Rise. The White House Is at a Loss Over What to Do About It,” by Adam Cancryn.
Rachel Cohrs: KFF Health News’ “Save Billions or Stick With Humira? Drug Brokers Steer Americans to the Costly Choice,” by Arthur Allen.
Tami Luhby: CNN’s “Supply and Insurance Issues Snarl Fall Covid-19 Vaccine Campaign for Some,” by Brenda Goodman.
Also mentioned in this week’s episode:
- The AP’s “Biden’s Medicare Price Negotiation Is Broadly Popular. But He’s Not Getting Much Credit,” by Seung Min Kim and Linley Sanders.
- Roll Call’s “Sanders, Marshall Reach Deal on Health Programs, but Challenges Remain,” by Jessie Hellmann and Lauren Clason.
CLICK TO EXPAND THE TRANSCRIPT
Transcript: Countdown to Shutdown
[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, Sept. 21, at 9 a.m. because, well, lots of news this week. And as always, news happens fast, and things might well have changed by the time you hear this. So here we go. We are joined today via video conference by Tami Luhby of CNN.
Tami Luhby: Good morning.
Rovner: Rachel Cohrs of Stat News.
Rachel Cohrs: Hi, everybody.
Rovner: And Alice Miranda Ollstein of Politico.
Alice Miranda Ollstein: Hello.
Rovner: Let’s get to some of that news. We will begin on Capitol Hill, where I might make a T-shirt from this tweet from Wednesday from longtime congressional reporter Jake Sherman: “I feel like this is not the orderly appropriations process that was promised after the debt ceiling deal passed.” For those of you who might’ve forgotten, many moons ago, actually it was May, Congress managed to avoid defaulting on the national debt, and as part of that debt ceiling deal agreed to a small reduction in annual domestic spending for the fiscal year that starts Oct. 1 (as in nine days from now). But some of the more conservative Republicans in the House want those cuts to go deeper, much deeper, in fact. And now they’re refusing to either vote for spending bills approved by the Republican-led appropriations committee or even for a short-term spending bill that would keep the government open after this year’s funding runs out. So how likely is a shutdown at this point? I would hazard a guess to say pretty likely. And anybody disagree with that?
Ollstein: It’s more likely than it was a week or two ago, for sure. The fact that we’re at the point where the House passing something that they know is dead on arrival in the Senate would be considered a victory for them. And so, if that’s the case, you really have to wonder what the end game is.
Rovner: Yeah, I mean it was notable, I think, that the House couldn’t even pass the rule for the Defense Appropriations Bill, which is the most Republican-backed spending bill, and the House couldn’t get that done. So I mean it does not bode well for the fate of some of these domestic programs that Republicans would, as I say, like to cut a lot deeper. Right?
Cohrs: Democrats are happy, I think, to watch Republicans flail for a while. I think we saw this during the speaker votes. Obviously, a CR [continuing resolution] could pass with wide bipartisan support, but I think there’s a political interest for Democrats going into an election year next year to lean into the idea of the House Republican chaos and blaming them for a shutdown. So I wouldn’t be too optimistic about Democrats billing them out anytime soon.
Rovner: But, bottom line, of course, is that a shutdown is not great for Democrats who support things that the government does. I mean, Tami, you’re watching, what does happen if there’s a shutdown? Not everything shuts down and not all the money stops flowing.
Luhby: No, and the important thing, unlike in the debt ceiling, potentially, was that Social Security will continue, Medicare will continue, but it’ll be very bothersome to a lot of people. There’ll be important things that … potentially chaos at airlines and food safety inspectors. I mean some of them are sometimes considered essential workers, but there’s still issues there. So people will be mad because they can’t go to their national parks potentially. I mean it’s different every time, so it’s a little hard to say exactly what the effects will be and we’ll see also whether this will be a full government shutdown, which will be much more serious than a partial government shutdown, although at this point it doesn’t look like they’re going to get any of the appropriation bills through.
Rovner: I was going to say, yeah, sometimes when they get some of the spending bills done, there’s a partial shutdown because they’ve gotten some of the spending bills done, but I’m pretty sure they’ve gotten zero done now. I think there’s one that managed to pass both the House and the Senate, but basically this would be a full shutdown of everything that’s funded through the appropriations process. Which as Tami points out, the big things are the Smithsonian and the National Zoo close, and national parks close, but also you can’t get an awful lot of government services. Meanwhile, the ill will among House Republicans is apparently rubbing off on other legislation. The House earlier this week was supposed to vote on a relatively noncontroversial package of bills aimed at making hospital insurance and drug prices more transparent, among other things. But even that couldn’t get through. Rachel, what happened to the transparency bill that everybody thought was going to be a slam-dunk?
Cohrs: Well, I don’t think everybody thought it was going to be a slam-dunk given the chaos that we saw, especially in the Democratic Caucus last week, where one out of three chairmen who work on health care in the House endorsed the package, but the other two would not. And they ran into a situation where, with the special rule that they were using to consider the House transparency package, they needed two-thirds vote to pass and they couldn’t get enough Democrats on board to pass it. And I think there were some process concerns from both sides that there was a compromise that came out right after August recess and it hadn’t been socialized properly and they didn’t have their ducks in a row in the Democratic side. But ultimately, I mean, the big picture for me I think was how hard it really is to take on the hospital industry. Because this was the first real effort I think from the House and it melted down before its first vote. That doesn’t mean it’s dead yet, but it was an embarrassment, I think, to everyone who worked on this that they couldn’t get this pretty noncontroversial package through. And when I tried to talk to people about what they actually oppose, it was these tiny little details about a privacy provision or one transparency provision and not with the big idea. It wasn’t ideological necessarily. So I think it was just a reflection on Congress has taken on pharma, they’re working on PBMs this year, but if they really do want to tackle hospital costs, which are a very big part of Medicare spending, it’s going to be a tough road ahead for them.
Rovner: As we like to point out, every single member of Congress has a hospital in their district, and they are quick to let their members of Congress know what they want and how they want them to vote on things. Before we move on, where are we on the PBM legislation? I know there was a whole raft of hearings this week on doing something about PBMs. And my inbox is full of people from both sides. “The PBMs are making drug prices higher.” “No, the PBMs are helping keep drug prices in check.” Where are we with the congressional effort to try and at least figure out what the PBMs do?
Cohrs: Yeah, I think there is still some disarray at this point. I would watch for action in December or whenever we actually have a conversation about government funding because some of these PBM bills do save money, which is the golden ticket in health care because there are a lot of programs that need to be paid for this year. So Congress will continue to debate those over the next couple of weeks, but I think everyone that I talk to is expecting potential passage in a larger package at the end of the year.
Rovner: So speaking of things that need to be paid for, the saga of Sen. Bernie Sanders and the reauthorization of some key primary care programs, including the popular community health center program, continues. When we left off last July, Sen. Sanders, who chairs the Senate Health, Education, Labor & Pensions Committee [HELP], tried to advance a bill to extend and greatly expand primary care programs without negotiating with his ranking Republican on the committee, Louisiana Sen. Bill Cassidy, who had his own bill to renew the programs. Cassidy protested and blocked the bill’s movement and the whole enterprise came to a screeching halt. Last week, Sanders announced he’d negotiated a bipartisan bill, but not with Cassidy, rather with Kansas Republican Roger Marshall, who chairs the relevant subcommittee. Cassidy, however, is still not pleased. Rachel, you’re following this. Sanders has scheduled a markup of the bill for later today. Is it really going to happen?
Cohrs: Well, I think things are on track and the thing to remember about a markup is it passes on a majority. So as long as Sen. Sanders can keep his Democratic members in line and gets Sen. Marshall, then it can pass committee. But I think there are some concerns that other Republicans will share with Sen. Cassidy about how the bill is paid for. There are a lot of ambitious programs to expand workforce training, have debt forgiveness, and address the primary care workforce crisis in a more meaningful way. But the list of pay-fors is a little undisciplined from what I’ve seen, I would say.
Rovner: That’s a good word.
Cohrs: Sen. Sanders is pulling some pay-fors from other committees, which he can’t necessarily do by himself, and they don’t actually have estimates from the Congressional Budget Office for some of the pay-fors that they’re planning to use. They’re just using internal committee math, which I don’t think is going to pass muster with Republicans in the full Senate, even if it gets through committee today. So I think we’ll see some of those concerns flare up. It could get ugly today compared with HELP markups of the past of community health center bills. And there are certainly some concerns about the application of the Hyde Amendment too, and how it would apply to some of this funding as it moves through the appropriations process.
Rovner: That’s the amendment that bans direct government funding of abortion, and there’s always a fight about the Hyde Amendment, which are reauthorizing these health programs. But I mean, we should point out, I mean this is one of the most bipartisanly popular programs, both the community health center program and these programs that basically give federal money to train more primary care doctors, which the country desperately needs. I mean, it’s something that pretty much everybody, or most of Congress, supports, but Cassidy has what, 60 amendments to this bill. I guess he’s really not happy. Cassidy who supports this in general just is unhappy with this process, right?
Cohrs: I think his concern is more that the legislation is half-baked, not that he’s against the idea of it. And Sen. Cassidy did sign on to a more limited House proposal as well, just saying, we need to fund the community health centers, we need to do something. This isn’t ready for prime time. We could see further negotiations, but the time is ticking for this funding to expire.
Rovner: Well, another program whose authorization expires at the end of the month is PEPFAR, the international AIDS/HIV program. It’s being blocked by anti-abortion activists among others, even though it doesn’t have anything to do with the abortion. And this is not just a bipartisan program, it’s a Republican-led program. Former President George W. Bush who signed it into law in 2003, had an op-ed this week pushing for the program in The Washington Post. Alice, you’ve been following this one. Is there any progress on PEPFAR?
Ollstein: Yes and no. There’s not a vote scheduled, there’s not a “Kumbaya” moment, but we are seeing some movement. I call it “Establishment Republican Strike Back.” You have some both on- and off-the-Hill Republicans really mobilizing to say, “Look, we need to reauthorize this program. This is ridiculous.” And they’re going against the anti-abortion groups and their allies on Capitol Hill who say, “No, let’s just extend this program just year by year through appropriations, not a reauthorization.” Which they say would rubber-stamp the Biden administration redirecting money towards abortion, which the Biden administration and everybody else denies is happening. And so we confirmed that Chairman Mike McCaul in the House and Lindsey Graham in the Senate are working with Democrats on some sort of reauthorization bill. It might not be the full five years, it might be three years, we don’t really know yet. But they think that at least a multiyear reauthorization will give the program some stability rather than the one-year funding patch that other House Republicans are mulling. So we’re going to see where this goes; obviously, it’s an interesting test for the influence of these anti-abortion groups on Capitol Hill. And my colleague and I also scooped that former President Bush, who oversaw the creation of this program, is quietly lobbying certain members, having meetings, and so we will see what kind of pull he still has in the party.
Rovner: Well, this was one of his signature achievements, literally. So it’s something that I know that … and we should point out, unlike the spending bills, the appropriation bills, if this doesn’t happen by Oct. 1, nothing stops, it’s just it becomes theoretically unauthorized, like many programs are, and it’s considered not a good sign for the program.
Luhby: One thing I also wanted to just bring up quickly, tangentially related to health care, but also showing how bipartisan programs are not getting the support that they did, is the WIC program, which is food assistance for women, infants and children, needs more money. Actually participation is up, but even before that, the House Republicans wanted to cut the funding for it, and that was going to be a big divide between them and the Senate. And now because participation is up, the Biden administration is actually asking for another $1.4 billion for the program. This is a program that, again, has always had support and has been fully funded, not had to turn people away. And now it’s looking that many women and small children may not be able to get the assistance if Congress isn’t able to actually fund the program fully.
Rovner: Yes, they’re definitely tied in knots. Well, Oct. 1 turns out to be a key date for a lot of health care issues. It’s also the day drugmakers are supposed to notify Medicare whether they will participate in negotiations for the 10 high-cost drugs Medicare has chosen for the first phase of the program that Congress approved last year. But that might all get blocked if a federal judge rules in favor of a suit brought by the U.S. Chamber of Commerce, among others. Rachel, there was a hearing on this last week, where does this lawsuit stand and when do we expect to hear something from the judge?
Cohrs: So the judge didn’t ask any questions of the attorneys, so they were essentially presenting arguments that we’ve already seen previewed in some of the briefing materials. We are expecting some action by Oct. 1, which is when the Chamber had requested a ruling on whether there’s going to be a preliminary injunction, just because drugmakers are supposed to sign paperwork and submit data to CMS by that Oct. 1 date. So I think we are just waiting to see what the ruling might be. Some of the key issues or whether the Chamber actually has standing to file this lawsuit, given it’s not an actual drug manufacturer. And there was some quibbling about what members they listed in the lawsuit. And then I think they only addressed the argument that the negotiation program violated drugmakers’ due process rights, which isn’t the full scope of the lawsuit. It’s not an indicator of success really anywhere else, but it is important because it is the very first test. And if a preliminary injunction is issued, then it brings everything to a halt. So I think it would be very impactful for other drugmakers as well.
Rovner: Nobody told me when I became a health reporter that I was going to have to learn every step of the civil judicial process, and yet here we are. Well, while we are still on the subject of drug prices, a new poll from the AP and the NORC finds that while the public, Republicans and Democrats, still strongly support Medicare being able to negotiate the price of prescription drugs, President [Joe] Biden is getting barely any credit for having accomplished something that Democrats have been pushing for for more than 20 years. Most respondents in the survey either don’t think the plan goes far enough, because, as we point out, it’s only the first 10 drugs, or they don’t realize that he’s the one that helped push it over the finish line. This should have been a huge win and it’s turning out to be a nothing. Is that going to change?
Ollstein: It’s kind of a “Groundhog Day” of the Obamacare experience in which they pass this big, huge reform that people had been fighting for so long, but they’re trying to campaign on it when people aren’t really feeling the effects of it yet. And so when people aren’t really feeling the benefit and they’re hearing, “Oh, we’re lowering your drug prices.” But they’re going to the pharmacy and they’re paying the same very high amount, it’s hard to get a political win from that. The long implementation timeline is against them there. So there are some provisions that kick in more quickly, so we’ll have to see if that makes any kind of difference. I think that’s why you hear them talk a lot about the insulin price cap because that is already in effect, but that hits fewer people than the bigger negotiation will theoretically hit eventually. So it’s tough, and I think it leaves a vacuum where the drug industry and conservatives can fearmonger or raise concerns and say, “This will make drugs inaccessible and they won’t submit new cures for approval.” And all this stuff. And because people aren’t feeling the benefits, but they’re hearing those downsides, yeah, that makes the landscape even tougher for Democrats.
Luhby: This is very much the pattern that the Biden administration has had with a lot of its achievements or successes because it’s also not getting any credit for anything in the economy. The job market is relatively strong still, the economy is relatively strong. Yes, we have high inflation and high prices, even though that’s moderated, prices are still high, and that’s what people are seeing. Gas prices are now up again, which is not good for the administration. But they’re touting their Bidenomics, which also includes lowering drug prices. But generally polling shows, including our CNN polling shows, that people do not think the economy is doing well and they’re not giving Biden any credit for anything.
Cohrs: I think part of the problem is that … it’s different from the Affordable Care Act where it was health care, health care, health care for a very long time. This is lumped into a bill called the Inflation Reduction Act. I think it got lumped in with climate, got looped in with tax. And the media, we did our best, but it was hard to explain everything that was in the bill. And Medicare negotiation is complicated, it’s wonky, and I don’t know that people fully understood everything that was in the Inflation Reduction Act when it passed and they capitulated to Sen. [Joe] Manchin for what he wanted to name it. And so I think some of that got muddled when it first passed and they’re kind of trying to do catch-up work to explain, again, like Alice said, something that hasn’t gone into effect, which is a really tough uphill climb.
Rovner: This has been a continuing frustration for Democrats, which is that actually getting legislation done in Washington always involves some kind of compromise, and it’s always going to be incremental. And the public doesn’t really respond to things that are incremental. It’s like, “Why isn’t it bigger? Why didn’t they do what they promised?” And so the Republicans get more credit for stopping things than the Democrats get for actually passing things. Right. Well, let us turn to abortion. The breaking news today is that the Senate is finally acting to bust the blockade Alabama Republican Sen. Tommy Tuberville has had on military promotion since February to protest a Defense Department policy allowing service people leave to travel to other states for abortions. And Tuberville himself is part of this breakage, right, Alice? And it’s not a full breakage.
Ollstein: Right. And there have also been some interesting interviews that maybe raise questions on how much Tuberville understands the mechanics of what he’s doing because he said in an interview, “Oh, well, the people who were in these jobs before, they’ll just stay in it and it’s fine.” And they had to explain, “Well, statutorily, they can’t after a certain date.” And he seemed surprised by that. And now you’re seeing these attempts to go around his own blockade, and Democrats to go around his blockade. In part, for a while, Democrats were really not wanting to do that, schedule these votes, until he fully relented because they thought that would increase the pressure.
Rovner: They didn’t want to do it nomination by nomination for the big-picture ones because they were afraid that would leave behind the smaller ones.
Ollstein: Exactly. But this is dragging on so long that I think you’re seeing some frustration and desire to do something, even if it’s not fully resolving the standoff.
Rovner: And I’m seeing frustration from other Republicans. Again, the idea of a Republican holding up military promotions for six months is something that was not on my Republican Bingo card five years ago or even two years ago. I’m sure he’s not making a lot of his colleagues very happy with this. So on the Republican presidential campaign trail, abortion continues to be a subject all the candidates are struggling with — all of them, it seems, except former President Donald Trump, who said in an interview with NBC on Sunday that he alone can solve this. Francis, you have the tape.
Donald Trump: We are going to agree to a number of weeks or months or however you want to define it, and both sides are going to come together, and both sides, and this is a big statement, both sides will come together and for the first time in 52 years, you’ll have an issue that we can put behind us.
Rovner: OK. Well, Trump — who actually seemed all over the place about where he is on the issue in a fairly bald attempt to both placate anti-abortion hardliners in the party’s base and those who support abortion rights, whose votes he might need if he wants to win another election — criticized his fellow Republicans, who he called, “inarticulate on the subject.” I imagine that’s not going over very well among all of the other Republican candidates, right?
Ollstein: We have a piece up on this this morning. One, Trump is clearly acting like he has already won the primary, so he is trying to speak to a general audience, as you noted, and go after those votes in the middle that he may need and so he’s pitching this compromise. And we have a piece that the anti-abortion groups are furious about this, but they don’t really know what to do about it because he probably is going to be the nominee and they’re probably going to spend tens of millions to help elect him if he is, even though they’re furious with these comments he’s making. And so it’s a really interesting moment for their influence. Of course, Trump is trying to have it both ways, he also is calling himself the most pro-life president of all time. He is continually taking credit for appointing the justices to the Supreme Court who overturned Roe v. Wade.
Rovner: Which he did.
Ollstein: Exactly.
Rovner: Which is true.
Ollstein: Which he definitely did. But he is not toeing the line anymore that these groups want. These groups want him to endorse some sort of federal ban on abortion and they want him to praise states like Florida that have passed even stricter bans. He is not doing that. And so there’s an interesting dynamic there. And now his primary opponents see this as an opening, they’re trailing him in the polls, and so they’re trying to capitalize on this. [Gov. Ron] DeSantis and a bunch of others came out blasting him for these abortion remarks. But again, he’s acting like he’s already won the primary, he’s brushing it off and ignoring them.
Rovner: I love how confident he is though, that there’s a way to settle this — really, that there is a compromise, it’s just nobody’s been smart enough to get to it.
Ollstein: Well, he also, in the same interview, he said he’ll solve the Ukraine-Russia war in a day. So I mean, I think we should consider it in that context. It was interesting when I talked to all these different anti-abortion groups, they all said the idea of cutting some sort of deal is ludicrous. There is no magic deal that everybody would be happy about. If anything …
Rovner: And those on the other side will say the same thing.
Ollstein: Exactly. How could you watch what’s happened over the past year or 30 years and think that’s remotely possible? However, they did acknowledge that him saying that does appeal to a certain kind of voter, who is like, “Yeah, let’s just compromise. Let’s just get past this. I’m sick of all the fighting.” So it’s another interesting tension.
Rovner: Yeah. And I love how Trump always says the quiet part out loud, which is that this is not a great issue for Republicans and they’re not talking about it right. It’s like Republicans know this is a not-great issue for Republicans, but they don’t usually say that in an interview on national television. That is Trump, and this will continue. Well, finally this week I wanted to talk about what I am calling the dark underbelly of the new weight loss drugs. This is my extra credit this week. It’s a Washington Post story by Daniel Gilbert called “Inside the Gold Rush to Sell Cheaper Imitations of Ozempic.” It’s about the huge swell of sometimes not-so-legitimate websites and wellness spas selling unapproved formulations of semaglutide and tirzepatide — better known by their brand names Ozempic, Wegovy, and Mounjaro — to unsuspecting consumers because the demand for these diabetes drugs is so high for people who want to lose weight. The FDA has declared semaglutide at least to be in shortage for the people it was originally approved for, those with Type 2 diabetes. But that designation legally allows compounding pharmacies to manufacture their own versions, at least in some cases, except to quote the piece, “Since then, a parallel marketplace with no modern precedent has sprung up attracting both licensed medical professionals and entrepreneurs with histories ranging from regulatory violations to armed robbery.” Meanwhile, and this is coming from a separate story, both Eli Lilly and Novo Nordisk, the manufacturers of the approved versions of the drugs, are suing companies they say are selling unapproved versions of their drug, including, in some cases, drugs that actually pretend to be the brand name drug that aren’t. This is becoming really a big messy buyer-beware market, right? Rachel, you guys have written about this.
Cohrs: It has. Yeah, my colleagues have done great coverage, including I think the lawsuit by manufacturers of these drugs who are seeing their profits slipping through their fingers as patients are turning to these alternatives that aren’t necessarily approved by the FDA. And I think there are also risks because we have seen some side effects from these medications; they range from some very serious GI symptoms to strange dreams. There’s just a whole lot going on there. And I think it is concerning that some patients are getting ahold of these medications, which are expensive if you’re buying them the traditional way. And again, for weight loss, I think some of these medications are still off-label, they’re not FDA-approved. So if they’re getting these without any supervision from a medical provider or somebody who they can ask when they have questions that come up and are monitoring for some of these other side effects, then I think it is a very dangerous game for these patients. And I think it’s just a symptom of this outpouring of interest and the regulators’, I think, failure to keep up with it. And there’s also some supply concerns. So I think it’s just this perfect storm of desperation from patients and the bureaucracy struggling to keep up.
Rovner: Yeah. One of the reasons I chose the story is I really feel like this is unprecedented. I mean, I suppose it could have been predicted because these drugs do seem to be very good at what they do and they are very expensive and very hard to get, so not such a surprise that not-so-honest people might spring up to try and fill the void. But it’s still a little bit scary to see people selling heaven only knows what to people who are very anxious to take things.
Luhby: And in related news, there are more doctors who are interested in obesity medicine now, so everyone is trying to cash in.
Rovner: Yeah, I mean, eventually I imagine this will sort itself out. It’s just that at the beginning when it’s so popular, although I will still … I keep thinking this, is the solution to really throw this much money at it or to try to figure out how to make these drugs cheaper? If it’s going to be such a societal good, maybe we should do something about the price. Anyway, that is my extra credit in this week’s news. Now we will take a quick break and then we’ll come back with the rest of our extra credits.
Hey, “What the Health?” listeners, you already know that few things in health care are ever simple. So, if you like our show, I recommend you also listen to “Tradeoffs,” a podcast that goes even deeper into our costly, complicated, and often counterintuitive health care system. Hosted by longtime health care journalist and friend Dan Gorenstein, “Tradeoffs” digs into the evidence and research data behind health care policies and tells the stories of real people impacted by decisions made in C-suites, doctors’ offices, and even Congress. Subscribe wherever you listen to your podcasts.
OK, we are back and 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. Tami, why don’t you go first this week?
Luhby: Sure. Well, this week I chose a good story by one of my colleagues, Brenda Goodman. It’s titled “Supply and Insurance Issues Snarl Fall Covid-19 Vaccine Campaign for Some.” And we’ve all been hearing this, I heard this from a friend of mine who’s a doctor, we know Cynthia Cox at KFF tweeted about this. And that even though the new vaccines are ready and the Biden administration has been pushing people to go get them, and many people are eager to get them, they’re not so easy to get. Either because drugstores are running out, that’s what happened to my friend. She went in and said there just wasn’t any supply available. Or for some other people, they’re supposed to be free for most Americans, but the insurance companies haven’t caught up with that yet. So they go in and either they’re denied or the pharmacy tells them that they have to pay potentially $200 for the vaccines. So the problem here is that there’s already an issue with getting vaccines and people getting vaccinated in this country and then putting up extra hurdles for them will only cause more problems and cause fewer people to get vaccinated because some people may not come back.
Rovner: Talk about something that should have been predictable. The distributors knew it was going to be available and pretty much when, and the insurance companies knew it was going to be available and pretty much when, and yet somehow they seem to have not gotten their act together when the predictable surge of people wanting to get the vaccine early came about. Alice, you wanted to add something?
Ollstein: Just anecdotally, the supply and the demand are completely out of whack. My partner is back home in Alabama right now and he was at a pharmacy where they were just wandering around asking random people, “Will you take the shot? Will you take the shot?” And a bunch of people were saying, “No.” And meanwhile, here in D.C., myself and everyone I know is just calling around wanting to get it and not able to. And so you think we’d have figured this out better after so many years of this.
Rovner: Well, I have an appointment for tomorrow. We’ll see if it happens. Rachel, why don’t you go next?
Cohrs: Sure. I chose a KFF Health News story by Arthur Allen, and the headline is “Save Billions or Stick With Humira? Drug Brokers Steer Americans to the Costly Choice.” And I just love a story where it’s off the news cycle a little bit and we see this big splashy announcement. And I think Arthur did a great job of following up here and seeing what actually was happening with formulary placement for Humira and the new biosimilars that just came on the market.
Rovner: Yep. Remind us what Humira is?
Cohrs: Oh, yeah. So it’s one of the most profitable drugs ever. The company that makes it, AbbVie, had created this big patent thicket to try to prevent it from competition for a very long time, but this year saw competition that had been on the market in Europe finally come online in the U.S. So again, a big change for AbbVie, for the market. But I think there was concern about whether people would actually switch to these new medications that have lower prices. But again, as it gets caught up and spit out of our drug supply chain, there are a whole lot of incentives that don’t necessarily result in the cheaper medication being prescribed. And Arthur found that Express Scripts and Optum, which are two of the three biggest pharmacy benefit managers, have the biosimilar versions of Humira at the same price as Humira. So that doesn’t really create a lot of incentive for people to switch. So I think it was just great follow-up reporting and we don’t really have a lot of visibility into these formularies sometimes. So I think it was a illuminating piece.
Rovner: Yeah. And the mess that is drug pricing. Alice.
Ollstein: So I also chose a great piece by my colleague Adam Cancryn and it’s called “The Anti-Vaccine Movement Is on the Rise. The White House Is at a Loss Over What to Do About It.” It’s part of a series we’re doing on anti-vax sentiment and its impacts. And this is just going into how the Biden administration really doesn’t have a plan for combating this, even as it’s posing a bigger and bigger public health threat. And some of their attempts to go after misinformation online were stymied in court and they also are struggling with not wanting to elevate it by debunking it — that that age-old tension of, is it better to just ignore it or is it better to combat it directly? A lot of this is also tying into RFK Jr.’s presidential bid and how much to acknowledge that or not. But the impact is that they’re not really taking this on, even as it’s getting worse and worse in the country.
Rovner: And I got a bunch of emails this week about the anti-vax movement spreading to pets — that people are now resisting getting their dogs and cats vaccinated. Seriously. I mean, it is a serious problem. Obviously, if people stop getting rabies vaccines, that could be a big deal. So something else to watch. All right. Well, I already did my extra credit. So that is it for this week. 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 indefatigable engineer, Francis Ying. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me; I’m still @jrovner on X and on Bluesky. Tami?
Luhby: You can tweet me at @Luhby. I sometimes check it still.
Rovner: Rachel.
Cohrs: I’m on X @rachelcohrs.
Rovner: Alice.
Ollstein: I’m @AliceOllstein.
Rovner: We will be back in your feed next week. Until then, be healthy.
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