Watch: Why the US Has Made Little Progress Improving Black Americans’ Health

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The United States has made almost no progress in closing racial health disparities despite promises, research shows. The government, some critics argue, is often the underlying culprit.

KFF Health News undertook a yearlong examination of how government decisions undermine Black health — reviewing court and inspection records and government reports, and interviewing dozens of academic researchers, doctors, politicians, community leaders, grieving moms, and patients. 

During the past two decades there have been 1.63 million excess deaths among Black Americans relative to white Americans. That represents a loss of more than 80 million years of life, according to a 2023 JAMA study.

The video features senior correspondents Fred Clasen-Kelly and Renuka Rayasam, along with Morris Brown, a family care physician in Kingstree, South Carolina.

Learn more about the “Systemic Sickness” series here.

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

Pay First, Deliver Later: Some Women Are Being Asked To Prepay for Their Baby

In April, just 12 weeks into her pregnancy, Kathleen Clark was standing at the receptionist window of her OB-GYN’s office when she was asked to pay $960, the total the office estimated she would owe after she delivered.

Clark, 39, was shocked that she was asked to pay that amount during this second prenatal visit. Normally, patients receive the bill after insurance has paid its part, and for pregnant women that’s usually only when the pregnancy ends. It would be months before the office filed the claim with her health insurer.

Clark said she felt stuck. The Cleveland, Tennessee, obstetrics practice was affiliated with a birthing center where she wanted to deliver. Plus, she and her husband had been wanting to have a baby for a long time. And Clark was emotional, because just weeks earlier her mother had died.

“You’re standing there at the window, and there’s people all around, and you’re trying to be really nice,” recalled Clark, through tears. “So, I paid it.”

On online baby message boards and other social media forums, pregnant women say they are being asked by their providers to pay out-of-pocket fees earlier than expected. The practice is legal, but patient advocacy groups call it unethical. Medical providers argue that asking for payment up front ensures they get compensated for their services.

How frequently this happens is hard to track because it is considered a private transaction between the provider and the patient. Therefore, the payments are not recorded in insurance claims data and are not studied by researchers.

Patients, medical billing experts, and patient advocates say the billing practice causes unexpected anxiety at a time of already heightened stress and financial pressure. Estimates can sometimes be higher than what a patient might ultimately owe and force people to fight for refunds if they miscarry or the amount paid was higher than the final bill.

Up-front payments also create hurdles for women who may want to switch providers if they are unhappy with their care. In some cases, they may cause women to forgo prenatal care altogether, especially in places where few other maternity care options exist.

It’s “holding their treatment hostage,” said Caitlin Donovan, a senior director at the Patient Advocate Foundation.

Medical billing and women’s health experts believe OB-GYN offices adopted the practice to manage the high cost of maternity care and the way it is billed for in the U.S.

When a pregnancy ends, OB-GYNs typically file a single insurance claim for routine prenatal care, labor, delivery, and, often, postpartum care. That practice of bundling all maternity care into one billing code began three decades ago, said Lisa Satterfield, senior director of health and payment policy at the American College of Obstetricians and Gynecologists. But such bundled billing has become outdated, she said.

Previously, pregnant patients had been subject to copayments for each prenatal visit, which might lead them to skip crucial appointments to save money. But the Affordable Care Act now requires all commercial insurers to fully cover certain prenatal services. Plus, it’s become more common for pregnant women to switch providers, or have different providers handle prenatal care, labor, and delivery — especially in rural areas where patient transfers are common.

Some providers say prepayments allow them to spread out one-time payments over the course of the pregnancy to ensure that they are compensated for the care they do provide, even if they don’t ultimately deliver the baby.

“You have people who, unfortunately, are not getting paid for the work that they do,” said Pamela Boatner, who works as a midwife in a Georgia hospital.

While she believes women should receive pregnancy care regardless of their ability to pay, she also understands that some providers want to make sure their bill isn’t ignored after the baby is delivered. New parents might be overloaded with hospital bills and the costs of caring for a new child, and they may lack income if a parent isn’t working, Boatner said.

In the U.S., having a baby can be expensive. People who obtain health insurance through large employers pay an average of nearly $3,000 out-of-pocket for pregnancy, childbirth, and postpartum care, according to the Peterson-KFF Health System Tracker. In addition, many people are opting for high-deductible health insurance plans, leaving them to shoulder a larger share of the costs. Of the 100 million U.S. people with health care debt, 12% attribute at least some of it to maternity care, according to a 2022 KFF poll.

Families need time to save money for the high costs of pregnancy, childbirth, and child care, especially if they lack paid maternity leave, said Joy Burkhard, CEO of the Policy Center for Maternal Mental Health, a Los Angeles-based policy think tank. Asking them to prepay “is another gut punch,” she said. “What if you don’t have the money? Do you put it on credit cards and hope your credit card goes through?”

Calculating the final costs of childbirth depends on multiple factors, such as the timing of the pregnancy, plan benefits, and health complications, said Erin Duffy, a health policy researcher at the University of Southern California’s Schaeffer Center for Health Policy and Economics. The final bill for the patient is unclear until a health plan decides how much of the claim it will cover, she said.

But sometimes the option to wait for the insurer is taken away.

During Jamie Daw’s first pregnancy in 2020, her OB-GYN accepted her refusal to pay in advance because Daw wanted to see the final bill. But in 2023, during her second pregnancy, a private midwifery practice in New York told her that since she had a high-deductible plan, it was mandatory to pay $2,000 spread out with monthly payments.

Daw, a health policy researcher at Columbia University, delivered in September 2023 and got a refund check that November for $640 to cover the difference between the estimate and the final bill.

“I study health insurance,” she said. “But, as most of us know, it’s so complicated when you’re really living it.”

While the Affordable Care Act requires insurers to cover some prenatal services, it doesn’t prohibit providers from sending their final bill to patients early. It would be a challenge politically and practically for state and federal governments to attempt to regulate the timing of the payment request, said Sabrina Corlette, a co-director of the Center on Health Insurance Reforms at Georgetown University. Medical lobbying groups are powerful and contracts between insurers and medical providers are proprietary.

Because of the legal gray area, Lacy Marshall, an insurance broker at Rapha Health and Life in Texas, advises clients to ask their insurer if they can refuse to prepay their deductible. Some insurance plans prohibit providers in their network from requiring payment up front.

If the insurer says they can refuse to pay up front, Marshall said, she tells clients to get established with a practice before declining to pay, so that the provider can’t refuse treatment.

Clark said she met her insurance deductible after paying for genetic testing, extra ultrasounds, and other services out of her health care flexible spending account. Then she called her OB-GYN’s office and asked for a refund.

“I got my spine back,” said Clark, who had previously worked at a health insurer and a medical office. She got an initial check for about half the $960 she originally paid.

In August, Clark was sent to the hospital after her blood pressure spiked. A high-risk pregnancy specialist — not her original OB-GYN practice — delivered her son, Peter, prematurely via emergency cesarean section at 30 weeks.

It was only after she resolved most of the bills from the delivery that she received the rest of her refund from the other OB-GYN practice.

This final check came in October, just days after Clark brought Peter home from the hospital, and after multiple calls to the office. She said it all added stress to an already stressful period.

“Why am I having to pay the price as a patient?” she said. “I’m just trying to have a baby.”

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

KFF Health News’ ‘What the Health?’: Readying for Republican Rule

The Host

Come January, Republicans will control the House of Representatives, Senate, and White House, regaining full power for the first time since 2018. That will give them significant clout to dramatically change health policy. But slim margins in Congress will leave little room for dissent.

Meanwhile, President-elect Donald Trump has vowed not to touch Medicare, though there are Medicare-related issues — including drug price negotiations and physician pay — that will soon demand attention.

This week’s panelists are Julie Rovner of KFF Health News, Anna Edney of Bloomberg News, Rachel Roubein of The Washington Post, and Lauren Weber of The Washington Post.

Among the takeaways from this week’s episode:

  • Republicans will control the House and the Senate beginning next year, potentially offering Trump crucial votes in support of his nominees and agenda. However, the party will govern with only a narrow majority in both chambers, which could hamper its ability to make sweeping or controversial changes. Regardless, the GOP will steer legislative efforts, such as setting government spending levels and limits, and control committees that decide what to prioritize and oversee.
  • Trump this week named several people he intends to nominate to his Cabinet. Yet many of his picks lack relevant experience or have staked out controversial policy positions — or both — raising the question: Can they clear the Senate confirmation process? Trump has suggested using recess appointments to get around that, a method that would largely bypass the Senate and limit his Cabinet secretaries’ authority.
  • Meanwhile, among the issues on Robert F. Kennedy Jr.’s health agenda are some that resonate with Democrats, such as cracking down on ultra-processed foods and food dyes. Notably, those sorts of initiatives — which could tighten rules for businesses, for instance — have not been part of the traditional conservative playbook.
  • And, looking ahead, there’s a lot the Trump administration could do to further erode abortion rights, and the GOP is likely to see this as a moment for trying things.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: KFF Health News’ “In Vermont, Where Almost Everyone Has Insurance, Many Can’t Find or Afford Care,” by Phil Galewitz.

Anna Edney: The Atlantic’s “Throw Out Your Black Plastic Spatula,” by Zoë Schlanger.

Rachel Roubein: Politico’s “‘Been a Long Time Since I Felt That Way’: Sexually Transmitted Infection Numbers Provide New Hope,” by Alice Miranda Ollstein.

Lauren Weber: JAMA Network Open’s “Medical Board Discipline of Physicians for Spreading Medical Misinformation,” by Richard S. Saver.

Also mentioned in this week’s podcast:


To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on SpotifyApple PodcastsPocket Casts, or wherever you listen to podcasts.

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

Scientists Fear What’s Next for Public Health if RFK Jr. Is Allowed To ‘Go Wild’

Many scientists at the federal health agencies await the second Donald Trump administration with dread as well as uncertainty over how the president-elect will reconcile starkly different philosophies among the leaders of his team.

Trump has promised he would allow Robert F. Kennedy Jr. to “go wild” on medicines, food, and health. With that, a radical antiestablishment medical movement with roots in past centuries could threaten the achievements of a science-based public health order painstakingly built since World War II, some of these scientists fear.

If Kennedy makes good on his vision for transforming public health, childhood vaccine mandates could wither. New vaccines might never win approval, even as the FDA allows dangerous or inefficient therapies onto the market. Agency websites could trumpet unproven or debunked health ideas. And if Trump’s plan to weaken civil service rights goes through, anyone who questions these decisions could be summarily fired.

“Never has anybody like RFK Jr. gotten anywhere close to the position he may be in to actually shape policy,” said Lewis Grossman, a law professor at American University and the author of “Choose Your Medicine,” a history of U.S. public health.

Kennedy and entrepreneur Calley Means say dramatic changes are needed because of the high levels of chronic disease in the United States. Government agencies have corruptly tolerated or promoted unhealthy diets and dangerous drugs and vaccines, they say.

Means and Kennedy did not respond to requests for comment. Four conservative members of the first Trump health bureaucracy spoke on condition of anonymity. They eagerly welcomed the former president’s return but voiced few opinions about specific policies. Days after last week’s election, RFK Jr. announced that the Trump administration would immediately fire and replace 600 National Institutes of Health officials. He set up a website seeking crowdsourced nominees for federal appointments, with a host of vaccination foes and chiropractors among the early favorites.

At meetings last week at Mar-a-Lago involving Elon Musk, Tucker Carlson, Donald Trump Jr., Kennedy, and Means, according to Politico, some candidates for leading health posts included Jay Bhattacharya, a Stanford University scientist who opposed covid lockdowns; Florida Surgeon General Joseph Ladapo, who opposes mRNA covid vaccines and rejected well-established disease control practices during a measles outbreak; Johns Hopkins University surgeon Marty Makary; and Means’ sister, health guru Casey Means.

All are mavericks of a sort, though their ideas are not uniform. Yet the notion that they could elbow aside a century of science-based health policy is profoundly troubling to many health professionals. They see Kennedy’s presence at the heart of the Trump transition as a triumph of the “medical freedom” movement, which arose in opposition to the Progressive Era idea that experts should guide health care policy and practices.

It could represent a turning away from the expectation that mainstream doctors be respected for their specialized knowledge, said Howard Markel, an emeritus professor of pediatrics and history at the University of Michigan, who began his clinical career treating AIDS patients and ended it after suffering a yearlong bout of long covid.

“We’ve gone back to the idea of ‘every man his own doctor,’” he said, referring to a phrase that gained currency in the 19th century. It was a bad idea then and it’s even worse now, he said.

“What does that do to the morale of scientists?” Markel asked. The public health agencies, largely a post-WWII legacy, are “remarkable institutions, but you can screw up these systems, not just by defunding them but by deflating the true patriots who work in them.”

FDA Commissioner Robert Califf told a conference on Nov. 12 that he worried about mass firings at the FDA. “I’m biased, but I feel like the FDA is sort of at peak performance right now,” he said. At a conference the next day, CDC Director Mandy Cohen reminded listeners of the horrors of vaccine-preventable diseases like measles and polio. “I don’t want to have to see us go backward in order to remind ourselves that vaccines work,” she said.

Exodus From the Agencies?

With uncertainty over the direction of their agencies, many older scientists at the NIH, FDA, and Centers for Disease Control and Prevention are considering retirement, said a senior NIH scientist who spoke on the condition of anonymity for fear of losing his job.

“Everybody I talk to sort of takes a deep breath and says, ‘It doesn’t look good,’” the official said.

“I hear of many people getting CVs ready,” said Arthur Caplan, a professor of bioethics at New York University. They include two of his former students who now work at the FDA, Caplan said.

Others, such as Georges Benjamin, executive director of the American Public Health Association, have voiced wait-and-see attitudes. “We worked with the Trump administration last time. There were times things worked reasonably well,” he said, “and times when things were chaotic, particularly during covid.” Any wholesale deregulation efforts in public health would be politically risky for Trump, he said, because when administrations “screw things up, people get sick and die.”

At the FDA, at least, “it’s very hard to make seismic changes,” former FDA chief counsel Dan Troy said.

But the administration could score easy libertarian-tinged wins by, for example, telling its new FDA chief to reverse the agency’s refusal to approve the psychedelic drug MDMA from the company Lykos. Access to psychedelics to treat post-traumatic stress disorder has grabbed the interest of many veterans. Vitamins and supplements, already only lightly regulated, will probably get even more of a free pass from the next Trump FDA.

Medical Freedom’ or ‘Nanny State

Trump’s health influencers are not monolithic. Analysts see potential clashes among Kennedy, Musk, and more traditional GOP voices. Casey Means, a “holistic” MD at the center of Kennedy’s “Make America Healthy Again” team, calls for the government to cut ties with industry and remove sugar, processed food, and toxic substances from American diets. Republicans lampooned such policies as exemplifying a “nanny state” when Mike Bloomberg promoted them as mayor of New York City.

Both the libertarian and “medical freedom” wings oppose aspects of regulation, but Silicon Valley biotech supporters of Trump, like Samuel Hammond of the Foundation for American Innovation, have pressed the agency to speed drug and device approvals, while Kennedy’s team says the FDA and other agencies have been “captured” by industry, resulting in dangerous and unnecessary drugs, vaccines, and devices on the market.

Kennedy and Casey Means want to end industry user fees that pay for drug and device rules and support nearly half the FDA’s $7.2 billion budget. It’s unclear whether Congress would make up the shortfall at a time when Trump and Musk have vowed to slash government programs. User fees are set by laws Congress passes every five years, most recently in 2022.

The industry supports the user-fee system, which bolsters FDA staffing and speeds product approvals. Writing new rules “requires an enormous amount of time, effort, energy, and collaboration” by FDA staff, Troy said. Policy changes made through informal “guidance” alone are not binding, he added.

Kennedy and the Means siblings have suggested overhauling agricultural policies so that they incentivize the cultivation of organic vegetables instead of industrial corn and soy, but “I don’t think they’ll be very influential in that area,” Caplan said. “Big Ag is a powerful entrenched industry, and they aren’t interested in changing.”

“There’s a fine line between the libertarian impulse of the ‘medical freedom’ types and advocating a reformation of American bodies, which is definitely ‘nanny state’ territory,” said historian Robert Johnston of the University of Illinois-Chicago.

Specific federal agencies are likely to face major changes. Republicans want to trim the NIH’s 27 research institutes and centers to 15, slashing Anthony Fauci’s legacy by splitting the National Institute of Allergy and Infectious Diseases, which he led for 38 years, into two or three pieces.

Numerous past attempts to slim down the NIH have failed in the face of campaigns by patients, researchers, and doctors. GOP lawmakers have advocated substantial cuts to the CDC budget in recent years, including an end to funding gun violence, climate change, and health equity research. If carried out, Project 2025, a policy blueprint from the conservative Heritage Foundation, would divide the agency into data-collecting and health-promoting arms. The CDC has limited clout in Washington, although former CDC directors and public health officials are defending its value.

“It would be surprising if CDC wasn’t on the radar” for potential change, said Anne Schuchat, a former principal deputy director of the agency, who retired in 2021.

The CDC’s workforce is “very employable” and might start to look for other work if “their area of focus is going to be either cut or changed,” she said.

Kennedy’s attacks on HHS and its agencies as corrupted tools of the drug industry, and his demands that the FDA allow access to scientifically controversial drugs, are closely reminiscent of the 1970s campaign by conservative champions of Laetrile, a dangerous and ineffective apricot-pit derivative touted as a cancer treatment. Just as Kennedy championed off-patent drugs like ivermectin and hydroxychloroquine to treat covid, Laetrile’s defenders claimed that the FDA and a profit-seeking industry were conspiring to suppress a cheaper alternative.

The public and industry have often been skeptical of health regulatory agencies over the decades, Grossman said. The agencies succeed best when they are called in to fix things — particularly after bad medicine kills or damages children, he said.

The 1902 Biologics Control Act, which created the NIH’s forerunner, was enacted in response to smallpox vaccine contamination that killed at least nine children in Camden, New Jersey. Child poisonings linked to the antifreeze solvent for a sulfa drug prompted the modern FDA’s creation in 1938. The agency, in 1962, acquired the power to demand evidence of safety and efficacy before the marketing of drugs after the thalidomide disaster, in which children of pregnant women taking the anti-nausea drug were born with terribly malformed limbs.

If vaccination rates plummet and measles and whooping cough outbreaks proliferate, babies could die or suffer brain damage. “It won’t be harmless for the administration to broadly attack public health,” said Alfredo Morabia, a professor of epidemiology at Columbia University and the editor-in-chief of the American Journal of Public Health. “It would be like taking away your house insurance.”

Sam Whitehead, Stephanie Armour, and David Hilzenrath contributed to this report.

Healthbeat is a nonprofit newsroom covering public health published by Civic News Company and KFF Health News. Sign up for its newsletters here.

After Congress Ended Extra Cash Aid for Families, Communities Tackle Child Poverty Alone

If you bring a baby into the Hurley Children’s Center clinic in downtown Flint, Michigan, Mona Hanna will find you. The pediatrician, who gained national prominence for helping uncover the city’s water crisis in 2015, strode across the waiting room in her white lab coat, eyes laser-focused on the chubby baby in the lap of an unsuspecting parent.

“Hi! I’m Dr. Mona!” she said warmly. “Any chance you guys live in Flint?” She learned the family is from neighboring Grand Blanc.

“That’s so sad!” Hanna said. “You should move to Flint! And have another baby! And you could be part of the Rx Kids program!” The parents chuckled politely. But the doctor was not kidding.

Billed as the first-ever citywide cash aid program for pregnant moms and babies, Rx Kids gives Flint residents $1,500 mid-pregnancy, and $500 each month for the baby’s first year. There are no strings attached. No income limits. And it’s universal; nearly every baby born since the program launched in January is enrolled.

Parents who bring their babies in for checkups at this clinic rattle off the ways the money has helped, from the cribs, diapers, clothes, and wipes they’ve bought to how it’s “kept them afloat” during maternity leave or provided crucial income when a spouse died.

But the true goal of Rx Kids goes far beyond Flint, as Hanna acknowledged, scooping up one of the Rx Kids babies in an exam room. “Do you think we should do this for babies everywhere? What do you think?” she asked, cooing. The baby gurgled happily, smiling. “That was an affirmative yes.”

Cash Payments as a Tool To Reduce Child Poverty

Many other countries, including Austria, Belgium, Canada, France, Germany, Ireland, Norway, Sweden, and the United Kingdom, already offer a child cash benefit. The U.S. essentially did, too, during the coronavirus pandemic: The 2021 expanded child tax credit gave low- and middle-income families (including those previously excluded because of insufficient income) hundreds of dollars per kid in direct, monthly payments for six months.

The child poverty rate fell to a historic low. But the expanded program expired at the end of 2021 and Congress did not renew it. The child poverty rate went back up.

For Luke Shaefer, director of the Poverty Solutions initiative at the University of Michigan’s Ford School of Public Policy and a longtime advocate of child cash benefits, it was “the most brutal day” of his career.

Soon after, he got an email from Hanna asking if he wanted to collaborate on the program that would become Rx Kids. The program’s goals go beyond cash aid for Michigan families: It is also aimed at getting donors, lawmakers, and voters excited about how child cash benefits could help their communities.

The list of the recently converted includes Republican state Sen. John Damoose, who has become an outspoken advocate for expanding Rx Kids. Referring to himself as “a pro-life person,” Damoose said, “I sure as heck better be concerned about making it easier for mothers to make the decision to have their children.” He said the Republican Party needs to get serious about supporting programs like Rx Kids. “We’ve been accused for years about being pro-birth, not pro-life. And I think that’s not without merit. We need to put our money where our mouth is and support these children and support their mothers.”

Already, what once seemed like a moon shot is gaining traction: Shaefer and Hanna say their communications with Vice President Kamala Harris’ presidential campaign helped shape Harris’ “baby bonus” proposal. President-elect Donald Trump’s campaign also supported expanding the child tax credit.

Meanwhile, Michigan has budgeted some $20 million in state Temporary Assistance for Needy Families cash to partially fund an expansion of Rx Kids to a short list of communities, if those areas can raise local matching funds. Those areas include rural communities like Michigan’s remote eastern Upper Peninsula, part of which is in Damoose’s district. “We want to make the tent as big as possible,” Hanna said.

But some Upper Peninsula health officials were initially wary. Each new Rx Kids community will need to raise millions of dollars in private donations to start and sustain the program in their community. “It could be a good thing,” Leann Espinoza, maternal-infant health program manager for the eastern Upper Peninsula, said in August. “But I’m not getting my hopes up. I know that sounds terrible.”

A woman wearing a black shirt and denim jacket leans against a white post and smiles at the camera
Leann Espinoza is the maternal-infant health program manager for the LMAS District Health Department, which covers four counties in the eastern Upper Peninsula of Michigan. As Rx Kids looks to expand to the remote, rural area, Espinoza is trying to balance her hope with pragmatism. For one, the area will need millions of dollars a year in matching funding to support the program.(Kate Wells/Michigan Public)

Upper Peninsula Families ‘Fall Through the Cracks’

In the wood-paneled rec room of the Clark Township Community Center, Espinoza broke the news to her team this summer: Rx Kids is not a program the eastern Upper Peninsula will be able to fund on its own.

It’s about “$3 million that we would need to raise,” she said, looking at three other LMAS District Health Department staff members.

Tonya Winberg, the public health nurse for Mackinac County, looked stunned. “It’s just, where does that $3 million come from?” Winberg asked. Other potential Rx Kids expansion sites, like Kalamazoo, have wealthy private foundations that can fund the program. The eastern Upper Peninsula does not.

“And how do we sustain it?” Espinoza added. “We hate to start programs, and then the funding is gone and we have to tell people, ‘It’s not here anymore; we can’t do it anymore.’”

The ruggedly beautiful and densely forested Upper Peninsula is used to feeling forgotten. There’s a running joke about how often it’s mislabeled as Canada or Wisconsin on maps. It has about a third of Michigan’s land mass, but just 3% of its residents. The sheer scale and sparse population mean options for food, housing, and child care are limited. Poverty rates are higher than the state average in much of Espinoza’s territory, and the region has some of the highest rates of newborns suffering from prebirth drug exposure in the state, according to the state health department.

A green sign with yellow writing says "Welcome to historic Manistique"
Manistique, Michigan, in the eastern Upper Peninsula, is one of the communities that would be included in the Rx Kids expansion if organizers can raise enough money. (Kate Wells/Michigan Public)

The view from the Clark Township Community Center in Cedarville, Michigan, where several members of the LMAS District Health Department met in August to discuss a possible Rx Kids expansion to the eastern Upper Peninsula. (Kate Wells/Michigan Public)

At the community center, Espinoza and her colleagues start listing all the ways Rx Kids would be a lifesaver for families in the Upper Peninsula, many of whom have some income and some resources but “don’t make enough to make it,” Espinoza said. “The fall-through-the-cracks families. And those are the ones that I really, really, really think this program would benefit, especially up here.”

Espinoza’s next meeting was with one of those families. Jessica Kline and her 18-month-old daughter, Aurora, live in Munising, a tourist town on Lake Superior. “She’s got a big personality, and her hair is red, so she came with a warning label,” Kline said of her daughter, laughing.

Aurora is a tiny force, speeding around the family’s apartment, unfazed by the nasal tube that connects her to an oxygen machine. She was born early, at just 24 weeks gestation, weighing less than 2 pounds. No hospital in the Upper Peninsula was equipped to care for a preemie that young. So Aurora and her parents spent seven months at a hospital in Ann Arbor, five hours south of their home. “We didn’t have a reliable vehicle,” Kline said. “We didn’t have a source of income.” Hospital social services provided $19 a day for food, which Kline would save up to buy supplies for Aurora.

When they finally got Aurora home to the Upper Peninsula, their house had been vandalized, the copper pipes stripped out. Espinoza’s team helped them find housing, and drove them to get groceries. Every day is a series of small battles, from finding the medical supplies Aurora needs to figuring out how to get to a revolving door of specialists hundreds of miles away. Still, Aurora’s dad has a job in town. They’ve got family nearby. They’re making it work, Kline said.

But having a program like Rx Kids could have made a huge difference in her daughter’s first year. “Five hundred dollars a month would have been enough to actually be able to get ourselves on our feet,” she said.

A woman wearing glasses and a blue tank top smiles at the baby she's holding, who has red hair and is wearing a pink outfit
Jessica Kline and daughter Aurora Wright live in Munising, Michigan, but had to spend the first seven months of Aurora’s life at a neonatal intensive care unit in Ann Arbor, about five hours south. Aurora was born at 24 weeks gestation, and none of Michigan’s Upper Peninsula hospitals were equipped to handle a preemie that young, Kline says. (Kate Wells/Michigan Public)

After Espinoza left Kline’s apartment, she drove south to her office in Manistique. It was late. Everyone else had gone home. Espinoza sat at her desk, trying to be pragmatic. She knows Rx Kids would not magically solve the lack of child care and housing and all the other things you need to break the cycle of poverty. But it would fix Kline’s car. It would help.

There will undoubtedly be critics, Espinoza said — people who believe parents will just use this money to buy drugs. “‘What did they do to earn it?’” she imagined them saying. “‘You’re just giving them free money, and they didn’t do anything to get it?’ Because they don’t understand. They don’t understand the barriers. They don’t understand that sometimes the choice isn’t always yours. Like, I’ve talked to moms who desperately want to go to work, and they want to support their family, but there’s no child care. And so they have no other choice.”

Espinoza recently got an update from Rx Kids’ Hanna: Largely because of private foundations outside the Upper Peninsula, the program has raised enough money to fund a “perinatal” version of Rx Kids for five counties in the eastern Upper Peninsula. The perinatal program would provide the $1,500 payment mid-pregnancy, plus $500 a month for a baby’s first three months, rather than the full year. “But the goal really is the full program, so we are still raising money,” Hanna said via email.

“I think it’s fantastic if we even just get the perinatal version to start,” Espinoza said. “That’s more than we had before.”

This article is from a partnership that includes Michigan Public, NPR, and KFF Health News.

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

Exposure to Marijuana in the Womb May Increase Risk of Addiction to Opioids Later in Life, Study Finds

Newswise — University of Maryland School of Medicine Researchers Identify Neurobiological Changes Leading to Increase Release of the Brain Chemical Dopamine and Its Target Neurons Linked to Addiction-Like Behavior 

With the increased legalization of recreational cannabis, as many as 1 in 5 pregnant women in the U.S. are now using the drug to help with morning sickness, lower back pain or anxiety. Evidence has been growing, however, to suggest that tetrahydrocannabinol (THC), the main psychoactive ingredient in cannabis, poses risks to the developing fetus by impacting brain development. Now a new study finds that this could increase the risk of addiction to opioids later in life.  

The preclinical animal study, led by researchers at the University of Maryland School of Medicine, was published in the journal Science Advances. It found that prenatal exposure to THC causes a rewiring of the fetal brain.  THC caused certain brain cells, called dopamine neurons, to respond in a hyperactive way, causing a heightened increase in dopamine release.  This was accompanied by heightened neuronal responsiveness to cues associated with rewards like a light turning on to indicate that food or an opioid drug was available.

“Doctors are contending with an explosion of cannabis use, and the THC content has quadrupled from what it was a generation ago,” said study corresponding author Joseph Cheer, PhD, a Professor of Neurobiology and Psychiatry at the University of Maryland School of Medicine. “It demonstrates the enduring consequences that prenatal cannabis exposure exerts on the brain’s reward system, which ultimately results in a neurobiological vulnerability to opioid drugs.”

The American College of Obstetricians and Gynecologists recommends that doctors counsel patients on concerns about potential adverse health consequences of continued use of cannabis during pregnancy. Dr. Cheer and others doing research on THC exposure during pregnancy are racing to learn more about the health consequences on developing fetuses to help doctors better counsel their patients on the drug’s effects.

To conduct this new study, he and his colleagues found that fetuses exposed to a moderately low dose of THC (equivalent to their mothers smoking one to two joints per day) developed changes in how their reward system functioned, causing them to develop an at-risk phenotype for opioid seeking. Animals previously exposed to THC in utero display a dramatically increased motivation to press a lever that would deliver a dose of opioid drugs compared to those that were not previously exposed to THC. 

When THC-exposed animals reached early adulthood, they were more likely to show enhanced opioid-seeking and were more likely to relapse upon opioid-associated environmental cues compared to those animals who were not exposed to THC in the womb. They were also more likely to develop persistent addiction-like behaviors.

In a follow-up experiment, the researchers implanted tiny sensors in the animals’ brains and measured heightened dopamine release, accompanied by activity in neurons that over-represented opioid-related cues, in the rats exhibiting strong addiction-like behaviors.

“These observations support the hypothesis of a hypersensitized ‘wanting’ system that develops in the brain after exposure to THC during prenatal development,“  said Dr. Cheer. “Interestingly, we found that this opioid-seeking phenotype occurs significantly more in males compared to females, and we are currently performing research with our colleagues at UMSOM, to determine why this is the case.” 

Dr. Cheer’s previous work published in the journal Nature Neuroscience found prenatal exposure to THC makes the brain’s dopamine neurons hyperactive, which may contribute to an increased risk of psychiatric disorders like schizophrenia. His work has been independently verified by three independent laboratories throughout the world.

Along with his colleague Mary Kay Lobo, PhD, Professor of Neurobiology at UMSOM, Dr. Cheer serves as the co-director of the Center for Substance Use in Pregnancy, which is part of UMSOM’s Kahlert Institute for Addiction Medicine. The two are working with a team of researchers to investigate the enduring effects of drug and alcohol exposure in the womb.

“We need to more fully understand the enduring effects of THC exposure in the womb and whether we can reverse some of the deleterious effects through CRISPR-based gene therapies or repurposed drugs,” said UMSOM Dean Mark T. Gladwin, MD, who is the John Z. and Akiko K. Bowers Distinguished Professor and vice president for medical affairs at the University of Maryland, Baltimore. “We also need to provide better advice to pregnant patients, many of whom are using cannabis to help control anxiety because they think this drug is safer for their baby than traditional anti-anxiety medications.”  

The study was funded by the National Institute on Drug Abuse (Grant: R01 DA022340)  (Grant: K99 DA060209).  UMSOM faculty member Miguel A. Lujan, PhD, a research associate in Neurobiology, was the first author of the paper. 

About the University of Maryland School of Medicine

Now in its third century, the University of Maryland School of Medicine was chartered in 1807 as the first public medical school in the United States. It continues today as one of the fastest growing, top-tier biomedical research enterprises in the world — with 46 academic departments, centers, institutes, and programs, and a faculty of more than 3,000 physicians, scientists, and allied health professionals, including members of the National Academy of Medicine and the National Academy of Sciences, and a distinguished two-time winner of the Albert E. Lasker Award in Medical Research. With an operating budget of more than $1.2 billion, the School of Medicine works closely in partnership with the University of Maryland Medical Center and Medical System to provide research-intensive, academic, and clinically based care for nearly 2 million patients each year. The School of Medicine has more than $500 million in extramural funding, with most of its academic departments highly ranked among all medical schools in the nation in research funding. As one of the seven professional schools that make up the University of Maryland, Baltimore campus, the School of Medicine has a total population of nearly 9,000 faculty and staff, including 2,500 students, trainees, residents, and fellows. The School of Medicine, which ranks as the 8th highest among public medical schools in research productivity (according to the Association of American Medical Colleges profile) is an innovator in translational medicine, with 606 active patents and 52 start-up companies. In the latest U.S. News & World Report ranking of the Best Medical Schools, published in 2023, the UM School of Medicine is ranked #10 among the 92 public medical schools in the U.S., and in the top 16 percent (#32) of all 192 public and private U.S. medical schools. The School of Medicine works locally, nationally, and globally, with research and treatment facilities in 36 countries around the world. Visit medschool.umaryland.edu

Pennsylvania Legislators to Address Xylazine Crisis at Free Medical Symposium

Newswise — Pennsylvania legislators and top medical experts will come together to address the growing xylazine crisis at an upcoming free symposium. The event, titled “The Next Chapter of the Opioid Epidemic in Pennsylvania: The Xylazine Crisis,” will be held on November 23, 2024, at the Bluemle Life Science Building at Jefferson Med in Philadelphia.

State Representative Rick Krajewski (D, Philadelphia), Subcommittee Chair on Health Care for the House Health Committee (Majority), and State Representative Mary Jo Daley (D, Montgomery), House Democratic Chair of the Women’s Health Caucus, will be among the key speakers at the symposium. Their participation underscores the importance of this issue at the state level and the need for collaborative efforts between policymakers and healthcare professionals.

The symposium, organized by the Rothman Orthopaedic Institute Foundation for Opioid Research & Education, will run from 8:30 am to 12:30 pm and is open to all medical professionals and students across Pennsylvania. This no-cost event offers a unique opportunity to gain critical insights into the xylazine crisis from legislative and medical perspectives.

In addition to the legislators, the symposium will feature presentations from a diverse group of medical experts. Daniel (Danny) Teixeira da Silva, MD, MSHP, Medical Director of the Division of Substance Use Prevention and Harm Reduction at the Philadelphia Health Department, will bring valuable insights from the public health sector.

The event comes at a crucial time as Pennsylvania grapples with the increasing impact of xylazine, a veterinary tranquilizer that has infiltrated the state’s illicit drug supply. Xylazine, commonly known as “tranq,” is a veterinary tranquilizer that has been found in illicit drug supplies, often mixed with fentanyl without users’ knowledge. The drug can cause dangerous decreases in breathing, heart rate, and blood pressure and is not affected by traditional overdose reversal medications.  Repeated xylazine use is associated with skin wounds, including open sores and abscesses.

The symposium will cover topics such as understanding the xylazine crisis, public policy related to xylazine, and medical and surgical management of xylazine-related issues. Sessions include Bioethical Considerations of Surgical Management, Harm Reduction Strategies for Xylazine Exposure, Surgical Management Strategies (Debridement), Surgical Management Strategies (Flap), Surgical Management Strategies (Wound Care), and an Inpatient Addiction Medicine Strategy. Several sessions on public policy and Xylazine will also be held.

The event’s chairpersons are Dr. Asif Ilyas, President of the Rothman Opioid Foundation and Professor of Orthopaedic Surgery at Drexel University College of Medicine, and Dr. Katherine Woozely, Head of Orthopaedic Hand and Nerve Surgery and Associate Professor of Orthopaedic Surgery at Cooper Medical School of Rowan University.

The program will feature presentations from experts in various fields, including toxicology, addiction medicine, orthopaedic surgery, plastic surgery, and family medicine.  Speakers include Rachel Haroz, MD, Head of Toxicology and Addiction Medicine and Associate Professor of Emergency Medicine at Cooper Medical School of Rowan University; Andrew Miller, Assistant Professor of Orthopaedic Surgery at Thomas Jefferson University; Lisa Rae, MD, Associate Professor of Surgery at Temple University School of Medicine; Mark Solarz, MD, Associate Professor of Orthopaedic Surgery at Thomas Jefferson University;  Rick Tosti, MD, Assistant Program Director of Hand Surgery and Associate Professor of Orthopaedic Surgery at Thomas Jefferson University; Lara Weinstein, MD; Program Director of Addiction Medicine and Professor of Family Medicine at Thomas Jefferson University; and Jason Wink, MD, Assistant Professor of Plastic Surgery at the University of Pennsylvania School of Medicine; and Erum Ilyas, MD, Associate Professor and the interim academic chair of the provisional Department of Dermatology at Drexel University. Jonathan Bigley of the government relations firm Bigley & Blikle will lead a panel discussion Q&A. 

Interested participants can register for the symposium at https://www.rothmanopioid.org/. While the symposium will not grant CME credit, it offers a valuable opportunity for medical professionals and students to gain insights into the emerging xylazine crisis and its impact on public health in Pennsylvania.

About the Rothman Institute Foundation for Opioid Research and Education.

The Rothman Orthopaedic Foundation, for short, is a non-profit 501c3 organization dedicated to raising awareness of the ongoing opioid crisis, educating physicians and patients on safe opioid prescribing and use – respectively, and advising policymakers on sound opioid and pain management policy. Most importantly, the Rothman Opioid Foundation performs and supports the highest quality research on opioids and alternative pain modalities to yield findings that can better inform patients, physicians, and the greater healthcare community in the most evidenced-based pain management strategies while working to mitigate opioid abuse and addiction. https://www.rothmanopioid.org/

New Evidence-Based Information from NCCN Offers Tangible and Moral Support for People Trying to Quit Smoking

Newswise — PLYMOUTH MEETING, PA [November 13, 2024] — The National Comprehensive Cancer Network® (NCCN®)—an alliance of leading cancer centers—today announced the publication of a new patient guideline designed to provide critical support and guidance for individuals with cancer who are seeking to quit smoking. Continued smoking elevates the risk of developing additional cancers, reduces the effectiveness of treatment, exacerbates treatment side effects, and is associated with shorter survival. The new NCCN Guidelines for Patients®: Quitting Smoking explains how to best use the tools that exist to help anyone quit for good. While focused on smoking cessation strategies in people with cancer, the information is also useful for smokers who do not have a cancer diagnosis.

“For every patient with cancer who is smoking at diagnosis or anytime during their cancer journey, quitting is absolutely possible. Quitting earlier is better, but any time helps,” said Peter G. Shields, MD, of The Ohio State University Comprehensive Cancer Center – James Cancer Hospital and Solove Research Institute. Dr. Shields serves as Chair of the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) Panel for Smoking Cessation, which develops evidence-based, expert consensus-driven recommendations intended for care providers. “By empowering patients with the same information that doctors use, we aim to make quitting smoking a more achievable goal, even for those who have struggled in the past. Smoking cessation requires the active work of both the patient and the health care provider. These patient guidelines are so critical for closing that loop for best success.”

The NCCN Guidelines for Patients: Quitting Smoking offers a fresh perspective and renewed hope for those who have previously tried to quit smoking without success and those who want to quit but haven’t yet taken initial steps. The book takes an encouraging, judgement-free approach, recognizing that slips and lapses are common and that a combination of therapies, rather than a one-size-fits-all solution, is often the key to success. It features multiple evidence-based options, including details on nicotine replacement therapy (NRTs), behavior therapy, and non-nicotine medicines.

The NCCN Guidelines for Patients: Quitting Smoking are available to view or download for free online at NCCN.org/patientguidelines or via the NCCN Patient Guides for Cancer App, thanks to funding from the NCCN Foundation®. Printed versions are available for a nominal fee at Amazon.com. A Spanish version will also be publishing soon.

“People with cancer understand the critical importance of quitting smoking, but the addiction is powerful. These NCCN Guidelines for Patients are designed to engage patients actively in their own care, turning smoking cessation into a collaborative, two-way conversation between patient and caregivers and their care team,” added Dr. Shields. “They offer easy-to-understand tools and support needed to make this challenging journey a success.”

“People with cancer have more than enough stress in their lives,” noted Patrick Delaney, Executive Director of the NCCN Foundation. “They and their doctors are engaged first and foremost with addressing the cancer itself. We hope this new patient guideline can be an added resource that empowers people to recognize they have options when it comes to quitting smoking, even while they may be focused on other medical treatments.”

The full library of NCCN Guidelines for Patients includes more than 70 free books providing people with cancer and their loved ones with easy-to-understand information about prevention, screening, diagnosis, treatment, and supportive care for nearly every type of cancer. They have received numerous awards over the years and are widely recognized as a trustworthy source for free health information online.

Other supportive care topics covered by the NCCN Guidelines for Patients include how to manage fatigue, distress, or nausea and vomiting during cancer treatment. Visit NCCN.org/patients to view all of the books and other informational offerings in multiple languages.

To help support NCCN patient guidelines, patient webinars, and other free resources for people with cancer and their caregivers, visit NCCN.org/foundation.

# # #

About the National Comprehensive Cancer Network

The National Comprehensive Cancer Network® (NCCN®) is a not-for-profit alliance of leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, equitable, and accessible cancer care so all patients can live better lives. The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) provide transparent, evidence-based, expert consensus recommendations for cancer treatment, prevention, and supportive services; they are the recognized standard for clinical direction and policy in cancer management and the most thorough and frequently-updated clinical practice guidelines available in any area of medicine. The NCCN Guidelines for Patients® provide expert cancer treatment information to inform and empower patients and caregivers, through support from the NCCN Foundation®. NCCN also advances continuing education, global initiatives, policy, and research collaboration and publication in oncology. Visit NCCN.org for more information.

About the NCCN Foundation

The NCCN Foundation empowers people with cancer and their caregivers by delivering unbiased expert guidance from the world’s leading cancer experts through the library of NCCN Guidelines for Patients® and other patient education resources. The NCCN Foundation is also committed to advancing cancer treatment by funding the nation’s promising young investigators at the forefront of cancer research. For more information about the NCCN Foundation, visit nccnfoundation.org.

An Arm and a Leg: Fight Health Insurance — With Help From AI

Meet Holden Karau: a San Francisco Bay Area software engineer who created an AI tool to help appeal insurance denials. 

Her project, Fight Health Insurance, is a labor of love. It draws on her tech expertise and years of experience fighting health insurance: for gender-affirming care, for rehab after getting hit by a car, and even for her dog, Professor Timbit. 

An Arm and a Leg host Dan Weissmann talked with Karau about what it took to build the tool, how it works, and what she hopes comes next.

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–

Let’s start with introductions.

Carolyn: My name is Carolyn DeSimone, and I have a super cute dog. His name is Professor Timbit. He’s a professor because he’s always researching something.

Holden Karau: My name is Holden Caro, and I’m trying to make health insurance suck a little bit less

Dan: Carolyn and Holden are married, and I talked with them in September because listeners had been sending me links to a story in the San Francisco Standard, with the headline “‘Make your health insurance company cry’: One woman’s fight to turn the tables on insurers.”

That woman was Holden. She works in tech, and the story was about a tool she’d built, to help people fight health insurance: It writes appeal letters, using AI of course.

She’s made it available at a web site, “fight health insurance dot com” 

I lose count of how many of you sent me that link, but thank you, SO much. 

Holden and Carolyn live in San Francisco. I talked to them on Zoom. A local reporter, Lee Romney, helped set up mics for the two of them in their living room. 

The bookshelves in the background had — along with books –lots little stuffed creatures. When I squinted, I could see a pikachu.

Holden Karau: So there’s a few Pikachu’s actually. Um, and we have a, we have a stuffed poop. Um, it’s a wombat poop. That’s why it’s square. Here. 

Dan: And Lee can’t help commenting when she sees the wombat poop because it’s a brown, plushie cube with a face. 

Carolyn: Let me go grab it. I’ll show you. 

Dan: Lee can’t help commenting when she sees the wombat poop: it’s a brown, plushy cube, with a face. 

Lee Romney: That’s a very regular looking turd.

Carolyn: Wombats have square poops so they don’t roll away. 

Lee Romney: Oh, I didn’t know that. 

Carolyn: Yeah, they have like special muscles in their buttholes to make square poops.

Dan: This is the most fun zoom I’ve ever been on, actually.

Dan: And we were just getting started. 

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 the job we’ve chosen here is to take one of the most enraging, terrifying, depressing parts of American life, and bring you a show that’s entertaining, empowering, and useful.

As you might imagine, Holden’s decision to create Fight Health Insurance draws on both her significant professional expertise — she’s worked for Google, IBM, Apple, and now Netflix, and has written several technical books about programming — 

and her personal experience fighting health insurance– also significant. 

And the reserves of anger and cussedness she got from those experiences.

Holden Karau: I try and be a nice person, but health insurance does not bring out the best in me. 

Carolyn: I don’t think it brings out the best in anyone. 

Holden Karau: Certainly, certainly no one that I know.

Dan: Holden’s gender transition provided lots of experience. 

Holden Karau: Being a trans person in America, you have to navigate health insurance.

Dan: For instance, early on, Holden says she learned something that I didn’t understand until I’d been working on this show for a while: 

If you get health insurance from your employer, it’s pretty likely that your state’s insurance laws don’t apply to your plan. 

Instead, your plan gets regulated by the federal department of Labor, under a federal law called ERISA. Holden knows a LOT about ERISA and had to think for a minute about when she picked it up. 

Holden Karau: When did I learn about ERISA? I think I knew what an ERISA plan was from IBM. 

Carolyn: Oh yeah, cause IBM got you boobs.

Holden Karau: Yeah. IBM paid for my boobs. Originally I was going to get a tattoo saying like sponsored by, but – I – no. 

Dan: Holden says her fighting-insurance game — and those reserves of anger– leveled up in 2019. 

Holden Karau: Yeah. When I got hit by a car is when I like started reading health insurance regulations because I didn’t have a lot else to do and it was also really important that I figure it out.

Dan: Holden had been riding a brand-new Vespa. She was on 16th Street in San Francisco’s Mission District. Carolyn picks up the story here…

Carolyn: A woman pulled out of the parking lot of the Safeway to turn left without looking. 

Holden Karau: Yeah, across four lanes of traffic.

Dan: Holden says she had two broken wrists, and some broken bones in her legs. It didn’t take long for her to start thinking about medical bills. Even though she was on very strong painkillers.

Holden Karau: I think while I was still on fentanyl, I was thinking about insurance. 

Dan: She was thinking, this is gonna be… a lot.

Carolyn: Out of the trauma bay, but possibly not when you were out of the ER, was the first time we thought about, what’s this gonna cost? 

Dan: But they say the actual haggling with insurance didn’t start for a few days, when it was time for Holden to leave the hospital. And head to rehab. Her insurance, she says, had a place in mind.

Holden Karau: They really wanted to send me somewhere really, really shitty.

Carolyn: We looked at the reviews of them. 

Holden Karau: Yeah. And it’s like, they’re actively being investigated by the state… 

Carolyn: …for like hitting their patients with things. 

Holden Karau: Yeah. It was like, no, I don’t want to go there.

Dan: Carolyn said she pitched in to help get Holden to a better rehab, but then they say there were battles over how much treatment she’d actually get. By that time, Carolyn says, Holden was ready to go right at it. 

Carolyn: Once you got to the rehab, I think you started reading the forms for fun. 

Holden Karau: I didn’t have a lot going on at that point, and I was still on opiates, but the opiates were less strong, so my brain was starting to work again. 

Carolyn: You got bored.

Holden Karau: Yeah.

Dan: Holden says her brain was working, but not her body. She couldn’t hold a laptop, or really type. Or get out of bed to pick up her phone if it fell to the floor. But even with broken wrists, she was ready to fight for the rehab treatment she needed.

Holden Karau: it ended up working out okay, and part of that was my willingness to just, like, take things to an unreasonable length. I was like, really, I have nothing to lose here, so I will sue you. I am bored.

Dan: Holden says it helped that she could afford a good lawyer. 

Especially because there were more fights ahead. She says she had to fight for special crutches – cause she couldn’t use regular ones with broken wrists — and for more physical therapy when she got home. 

And there was an epic fight to make sure medical bills didn’t completely devour any settlement from the driver’s car insurance. This was a next-level legal education.

Holden says it took three years to get all the legal issues resolved. And, Meanwhile, she discovered that she’d developed a super-power — or call it a special interest. 

She noticed: If someone at a party, say, started talking about a problem they were having with health insurance, she was ready — eager– to take them down the rabbit hole. 

Holden Karau: they’d be like, complaining about a thing, and it’s like, oh no, like, yeah, yeah, yeah, this sucks, and they totally do that, but like, there’s actually a thing that you can do, it was like, okay, like, this is a thing that I know how to do. I like helping people

Dan: But conversations at parties weren’t much of an outlet.

Holden Karau: Like, I don’t get invited to a lot of parties, because not a lot of people are like, I would love to hang out with that lady that keeps talking about ERISA regulations or the Affordable Care Act.

Dan: And then, in January of 2023, Holden was talking with a friend at a tech conference.

Holden Karau: He has family that also has perhaps a non standard level of experience with insurance, and so like we were talking about generative AI… 

Dan: Generative AI. Chat GPT had been released less than two months before.. Holden and her friend ended up thinking.. .

Holden Karau: You know what, we could use this to actually, like, make the world suck a little less.

Dan: Could use these new generative-AI tools to fight health insurance. Like by having it write appeal letters when claims got denied. An idea was one thing. Making something would take more. Holden used what she knew about herself to make that happen.

Holden Karau: There’s, there’s different kinds of motivation, right? There’s like, uh, deadline driven, uh, programming, which is like when you agree to give a talk at a conference, you’re like, okay, I need to do this by this date. Otherwise I’m going to look really bad in front of a bunch of people. Uh, so I’ll do that a lot, but the other equally strong motivation, I think, is hate. And I hate insurance companies. Because they’ve just like, they’ve been so mean to me and my friends. 

Dan: Then, a few months later, another conference provided an opportunity to combine those motivations: A hackathon — a competition where engineers and developers  get a limited amount of time to put a project together. . 

Holden Karau: I was like, okay, I’m gonna work on this for the hackathon. 

Dan: That gave her a deadline: 30 days. Her project came in third. 

Holden Karau: which, not fantastic, but, like, not terrible, you know.

Dan: Third out of more than 50. Plus, it worked! Kind of. 

Holden Karau: So like it would say things like, this procedure should be covered because of the llama llama virus, and it’s just like, oh, well that, that’s not a real thing, but like, good try, good try, right? And it was like, you know, like, it’s interesting, and like, it kind of sort of works, but it’s also, it’s not great, right?

Dan: Getting to the next stage would require a new approach, and some motivation — more rage — which came from a surprising source.. That’s next… 

This episode of An Arm and a Leg is a co-production with KFF Health News. That’s a national nonprofit newsroom producing in-depth journalism about health issues. Their reporters do amazing work — and win all kinds of awards every year. We’re honored to work with them.

So Holden came out of that hackathon with something that kind of worked. Kind of. 

Then she says she found herself in a fight on behalf of someone else in her household.  

Holden Karau: Timbit, our dog, who’s amazing, I love him, had a bunch of dental work done and the pet health insurance people were jerks about that.

Carolyn: They said he didn’t need anesthesia to have teeth pulled. They rejected the anesthesia. He’s 11 pounds. He can’t be awake during…

Holden Karau: I don’t even know if like, don’t, I don’t know anyone can be awake for that. And so I was like, okay, cool, how can I put the screws to them? Because you were mean to my dog. I’m used to health insurance companies being mean to me to the extent that I’m almost numb to it at this point. But like, my dog is precious and perfect. I read the plan documents because I’m a nerd. And like, this is not, Your obligation, like, you are obligated to do more. You would have to prove that this is not necessary, and I don’t think you can do that.

Dan: Holden says she also read up on state regulations for pet insurance, and let the company know she’d found grounds for some potentially-serious challenges.

Holden Karau: and that, along with, uh, some other, perhaps less than polite words, did result in them changing their opinion about whether or not he should be awake for getting his teeth pulled out. 

Dan: Well done. Well done. 

Holden Karau: And then it s was like, okay, you know what? Yeah, I should put in the time to finish this, right?

Dan: Finish the tool to fight insurance companies.

Holden Karau: Like, I’ve got this thing that’s like kind of half baked, but I should, I should take this over the finish line. Like, screw these insurance companies.

Dan: To do that, she was going to need some data to train her AI — the technical term is “large language model” — or “model” for short. 

Holden Karau: Because the big problem, and part of why we got this like, llama llama virus thing, is like when you don’t have data to train a model, it’s bad, right? It’s like garbage in, garbage out. And this is also part of why like, a lot of large models on the internet are bad, they’re like trained on Reddit.. 

Dan: Yeah, so they learn HOW people use language. But they don’t learn facts. They’re like a really smart 18 year old who hasn’t done the reading but is good at bullshitting. Because they know what “an answer” sounds like in this context.

Holden needed to train her model on a bunch of factual data for health insurance appeals and denials. And she found it. Thanks to the California Department of Insurance. If your insurance denies a claim, and it’s regulated by the state of California, you can request an independent medical review from the Department of Insurance. 

Which decides whether your procedure was medically necessary. Every decision gets published online. Describing the facts. The diagnosis. The procedure. And the reasoning behind the decision.

Holden Karau: And, like, that’s the information that you want, right? You want to know, like, for a diagnosis and procedure, why is this necessary? Why should the insurance company have to cover this?

Dan: And all that information was in this data — for many thousands of appeals, many thousands of decisions.

Holden Karau: I found the independent medical review data. And I was like, okay, cool. I can use this to make the model better.

Dan: Holden started whipping the model into shape. After about six months, she paid a developer to work up a web version — something that you don’t have to be a tech person to actually use. She bought hardware — servers. All told, she thinks she spent maybe ten thousand dollars, plus a year of nights and weekends. 

In August of this year, she had something ready to show the world.

She emailed a local reporter who had been writing about health insurance.

Holden Karau: I’m like, this local kid who’s been working on this thing. It seems like it might be, like, kinda on your beat. If not, like, absolutely no stress, but, like, let me know. And if you wanna chat about it, like, I’m happy to jump on my Vespa and like, swing over and I can talk with you about it and show it to you. And, um, and she emailed me back and was like, yeah, that sounds cool.

Dan: What Holden showed that reporter — pretty much what you see now at fight health insurance dot com — isn’t a magic wand. It doesn’t do EVERYTHING for you.

You’ve gotta make a scan of the denial letter from your insurance company, and run it through “optical character recognition” — turn it from an image of text into actual text. Oh, and zap personally-identifiable information — like your name and address — from the document. So none of that gets captured by any machines.

You can also write up a narrative with any details — that’s optional, but seems like a good idea. And you can upload your documents from your insurance company that describe your benefits. That also seems smart. 

You feed it everything, and it gives you back a draft of an appeal letter — actually, more than one, so you can pick and choose, and make edits. 

So, there’s some homework. And it all still looks kinda early-stage. The site isn’t super-pretty. And you know how early, not-quite-officially-released software gets called a “beta” release?  This one says “alpha” — earlier than that. 

So, no guarantees. But it’s something. 

Holden showed it to that reporter, and the result was the article that a bunch of listeners started sending me.

By the time I talked with Holden and Carolyn, about three weeks later, Holden said about three hundred people had used it. She’d been keeping an eye on how it performed.

Holden Karau: It seems to generate things that look good, right? Which, this is important to me. Um, I also get emails from people saying like, cool, thank you, thanks for doing this, um, so that’s pretty rad. 

But like, I assume that you get some of the same stories there’s some people where they reach out, they’re like, Hey, this is my specific situation. Like, what can I do? And it’s often just like, I wish I could help you. But like, this is just completely fucked.

Dan: I do get those, of course. It never gets easier. [And, I should say: If you’ve written me and I haven’t responded, don’t assume it’s because your situation is completely fucked. It’s just as likely that I can’t keep up with my email, but I REALLY APPRECIATE you writing to me, no matter what. I learn so much. Including things that don’t suck, like when a bunch of you wrote to me about Holden and her project.]

When we talked, Holden said she hadn’t gotten much information about whether these appeals were working. Insurance companies generally give themselves a month to respond to appeals. And it hadn’t been that long.

Meanwhile, there was the question of where this project could go next. 

Holden Karau: Do I do it for like, more than evenings and weekends?Or do I do it for evenings and weekends? And I don’t, I don’t know what the answer to that is yet.

Dan: Holden had ideas about ways it could earn income — maybe by charging doctors and other providers, but keeping the service free for patients? 

When I asked how much it would cost to take Fight Health Insurance to the next level, make it available and useful to — you know, everybody who might need it– and keep it up to date, and keep it reliable and stable — she started thinking, and the numbers kept going up: a hundred thousand, two, four, five, more.

A few weeks later, Holden came to Chicago, where I live, for a conference. I went to meet her! And I got an update from her. 

Holden Karau: there’s some people who, who like sent in their appeals and, and things got approved, and that’s pretty awesome. I’m, I’m pretty stoked with that. I guess the, the other thing is like, people seem generally positive and happy. So yeah…

Dan: Thank you for this thing that didn’t exist before.

Holden Karau: when the alternative is just giving up hope, like, this is so much better than just going, like, God damn it.

Dan: She was still puzzling over how Fight Health Insurance could grow. She said when she asked a friend with experience in the startup world for advice about talking with business or venture capital folks, the friend’s response was pretty immediate.

Holden Karau: What are you doing? No, no. They are gonna like, they’re, hm… they’re gonna lead you down the path that you are trying really hard to avoid.

Dan: Charge patients money, maybe harvest their data for who-knows-what icky purposes. Basically turn into another shark. 

Holden Karau: This is probably just my naivety, but I really I have this belief that the consumer version should be free always. And so one of the tricks is finding someone that agrees with that, who’s willing to give us money. Because, otherwise, It’s like, nah, it’s cool. But then the second question is, like, is there a way to shift the economics of denials, such that, like, insurance companies, like, it just costs them more to be dicks, right?

Dan: Assuming she finds the right kind of partner, there’s a question of how Fight Health Insurance would earn income to keep itself going. 

She’s still interested in the idea of selling a paid version to doctors and other practitioners, and when we talked she’d heard from some folks in that world. 

Holden Karau: Of the professionals reaching out, a lot of them were from the mental health field. That’s something where, that’s an area that I feel strongly about. Like, I would not be here if it was not for access to mental health. 

Dan: Meanwhile, she says she’s squeezing in about a day a week for the project, in between her full-time job and the rest of her life.

Holden Karau: It’s probably not super healthy. Um, yeah. There’s this whole trading sleep thing, which is, in the long run, not a great bargain.

Dan: So you’ve been thinking, at some point, there’ll be some choices to make.

Holden Karau: Yeah, I mean realistically probably January will be when I know if I can like work on this more full time or not. Otherwise it’ll continue to exist as the thing that I do when I have free time and no one’s looking too closely.

Dan: For now, Holden’s taking things one step at a time.

Holden Karau: One of the other things that I’m reminded of what one of my therapists reminds me of so frequently is that we are not responsible for fixing the world, but we must participate in the world’s healing.  

Dan: Yep.

I think that for some of us, our existence is enough, but when we can, I think it’s good to find the small things we can do because otherwise we would do nothing.

Dan: Can I please say, Amen.

If you give Holden’s tool a try, I am SUPER curious to hear how it turns out. 

If you do, I should mention:  The privacy policy on Holden’s site says that if the enterprise ever, say, gets sold, then whoever buys it could end up with any data you give it.  

So Holden actually suggests: maybe create a temporary email address for working with her site. Just in case some shark ends up with this stuff. (It needs AN email to send you its results. The site asks for a name too. You could consider using a fake one.)

We’ll have links to fight health insurance — and to instructions for creating a temporary email address — wherever you’re listening to this.

And we’ll be back in a few weeks with a brand-new episode.

Till then, take care of yourself.

This episode of An Arm and a Leg was produced by me, Dan Weissmann, with help from Emily Pisacreta — and edited by Ellen Weiss. 

Adam Raymonda is our audio wizard. Our music is by Dave Weiner and Blue Dot Sessions. Gabrielle Healy is our managing editor for audience. 

Lynne Johnson is our operations manager. Bea Bosco is our consulting director of operations. 

An Arm and a Leg is produced in partnership with KFF Health News. That’s a national newsroom producing in-depth journalism about health issues in America and a core program at KFF, an independent source of health policy research, polling, and journalism. 

Zach Dyer is senior audio producer at KFF Health News. He’s editorial liaison to this show. 

And thanks to the Institute for Nonprofit News for serving as our fiscal sponsor. They allow us to accept tax-exempt donations. You can learn more about INN at INN.org. 

Finally, thank you to everybody who supports this show financially. You can join in any time at arm and a leg show, dot com, slash: support. Thank you so much for pitching in if you can — and, thanks for listening.


“An Arm and a Leg” is a co-production of KFF Health News and Public Road Productions.

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

As California Taps Pandemic Stockpile for Bird Flu, Officials Keep Close Eye on Spending

SACRAMENTO — California public health officials are dipping into state and federal stockpiles to equip up to 10,000 farmworkers with masks, gloves, goggles, and other safety gear as the state confirms at least 21 human cases of bird flu as of early November. It’s the latest reminder of the state’s struggle to remain prepared amid multibillion-dollar deficits.

Officials said they began distributing more than 2 million pieces of personal protective equipment in late May, four months before the first human case was confirmed in the state. They said they began ramping up coordination with local health officials in April after bird flu was first detected in cattle in the U.S. Bird flu has now been confirmed at more than 270 dairies in central California, and traces were recently detected at a wastewater sampling site in Los Angeles County. Bird flu was also recently detected in a flock of commercial turkeys in Sacramento County.

California is putting a number of lessons from the covid-19 pandemic to use, such as coordinating emergency response with local health officials and tracking infectious diseases through wastewater surveillance, as the state tries to limit the spread of bird flu to humans. It’s striving to maintain an adequate emergency stockpile to withstand the first wave of any new public health disaster without hemorrhaging the state budget.

“We are far better prepared to respond to a pandemic than we were in 2020,” said Amy Palmer, a spokesperson for the Governor’s Office of Emergency Services.

For instance, before the coronavirus struck in 2020, the state’s emergency supplies stockpile was barely big enough to crowd two basketball courts.

By the time California ramped up its pandemic response, it had enough personal protective equipment and other disaster supplies to fill 52 football fields. California spent $15.6 billion on direct pandemic response during the covid crisis years, much of it provided by the federal government.

Today, the stockpile fits into about 12½ football fields, though it can seesaw from month to month.

According to the state, the current stockpile includes 101 million face masks, 26 million more than the 90-day supply recommended by the state’s pandemic preparedness guideline.

That includes 88 million N95 masks, more than the emergency services agency said was needed last year. The high-efficiency masks are considered crucial to protect against airborne viruses such as covid-19.

Although the state is building up its stockpile, Palmer could not say if the additional masks are related to fears of bird flu, only that planners are always working “to keep pace with the current risk environment.”

The state’s goal, Palmer said, is to have “an initial supply during emergencies to allow us the time to secure resources,” whether through the federal government or by buying more.

There is no indication of spread between humans in the recent California bird flu cases, and health officials say public risk remains low. Human transmission of bird flu is among several worst-case scenarios for a new pandemic, alongside the possibility of a resurgent mutant coronavirus; wider international spread of mpox, Marburg virus, or Ebola; or an entirely new virus for which there initially is no immunity or vaccine.

Yet, health officials nationwide have struggled to track bird flu transmission. And California has a history of swinging back and forth on preparedness.

Republican Gov. Arnold Schwarzenegger ordered an increase in California’s pandemic preparedness in 2006 in response to an earlier threat from bird flu. That included three mobile hospitals that could immediately be deployed during disasters.

Gov. Jerry Brown, a Democrat, ended the program in 2011 as state finances went bust. By the time covid struck, the state released 21 million N95 masks, some so old they were past their expiration date.

Now hospitals are required to maintain their own three-month supply of masks, gowns, and other personal protective equipment under a state law passed in 2020. California’s aerosol transmissible disease standard also uniquely requires hospitals and other high-risk workplaces to follow precautions such as using negative pressure isolation rooms and the highest level of protective equipment until more is known about a new pathogen.

“It is difficult to overstate the level of unpreparedness exhibited by hospitals both in and outside of California in dealing with the 2020 outbreak of COVID-19,” according to a legislative analysis. “Harrowing images of nurses walking the corridors of hospitals in makeshift masks and garbage bags became commonplace.”

California Hospital Association spokesperson Jan Emerson-Shea said hospitals “continuously prepare to respond to all types of disasters, including outbreaks of transmissible viruses.”

In addition, Palmer said California has five mobile hospitals acquired from the federal government, though they got little use during the pandemic. She said they have to be maintained, such as making sure pulse oximeters have working batteries.

But, once again, the current deficit has the state trying to strike a balance.

While lawmakers rejected most of Democratic Gov. Gavin Newsom’s $300 million proposed cut to public health funding, the state slashed funding for its stockpile of personal protective equipment by one-third a year ago after it determined that no additional covid-related purchases were necessary, according to the Department of Finance. California eliminated funding this year for eight 53-foot-long trailers that would have moved stockpiled items between warehouses. It’s also cutting nearly $40 million over the next four years from its $175 million disaster stockpile budget.

The state’s preparedness wasn’t good enough for Californians Against Pandemics, which gathered more than 1 million signatures to put a ballot measure before voters in November. The measure would have increased taxes on people with incomes over $5 million and used that money for pandemic prevention and response.

But that effort collapsed after one of its key financial supporters, former cryptocurrency executive Sam Bankman-Fried, was convicted of defrauding customers and investors. In exchange for initiative backers dropping the measure, state officials agreed to broaden the scope of the California Initiative to Advance Precision Medicine, which was created in 2015 to focus on developing new medicines and therapies, to include technologies for preventing another pandemic.

“By harnessing the power of precision medicine, California is moving to the forefront of pandemic preparedness and prevention,” Newsom said at the time.

Rodger Butler, a spokesperson for the state Health and Human Services Agency, said it’s unclear if the precision medicine initiative will receive additional funding.