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A Move to Cut Drug Prices Has Patients With Rare Diseases Worried

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by Markian Hawryluk
Wed, 30 Aug 2023 09:00:00 +0000

For people with cystic fibrosis, like Sabrina Walker, Trikafta has been a life-changer.

Before she started taking the drug, she would wind up in the hospital for weeks at a time until antibiotics could eliminate the infections in her lungs. Every day, she would wear a vest that shook her body to loosen the mucus buildup.

One particularly bad flare-up, known as a pulmonary exacerbation, had her coughing up blood in 2019, so she was put on the newly approved breakthrough medication.

Within a month, her lung function increased by 20%, she said, and her health improved. Before she started taking Trakafta, she could count on three to four hospitalizations a year. Over the four years on the medication, she has been hospitalized only once.

“I was spending hours a day doing airway clearance and breathing treatments, and that has been significantly reduced,” said the 37-year-old Erie, Colorado, mother. “I’ve gained hours back in my day.”

Now she runs and hikes in the thin Colorado air and works a full-time job. Other patients have seen similar gains with the drug therapy, allowing many to resume regular lives and even take themselves off waiting lists for a lung transplant. Yet Walker and scores of other Colorado patients with cystic fibrosis are worried they could lose access to that transformative medication.

A state board charged with addressing the affordability of the most expensive prescription drugs has chosen Trikafta among its first five drugs to review, and it could move to cut the medication’s average in-state annual price of approximately $200,000, accounting for both insurers’ contributions and patients’ out-of-pocket costs. Drugmakers, including Trikafta’s maker, Vertex Pharmaceuticals, have said payment limits could hurt innovation and limit access, stoking panic among patients that the drug might no longer be sold in Colorado.

Two of the drugs chosen by the state board, the rheumatoid arthritis treatment Enbrel and the psoriasis medication Stelara, also appear on the initial list of 10 drugs for which Medicare will negotiate prices. Any federally negotiated price reductions won’t go into effect until 2026, and it’s unclear how that effort will affect the Colorado board’s work in the interim.

The Colorado board’s choice of drugs to review elucidates one of the thorniest questions the board must wrangle with: Would lowering the price tag for rare-disease medications lead manufacturers to pull out of the state or limit their availability? State officials contend that the high cost of prescription drugs puts them out of reach for some patients, while patients worry that they’ll lose access to a life-changing therapy and that fewer dollars will be available to develop breakthrough medications. And with affordability boards in other states poised to undergo similar exercises, what happens in Colorado could have implications nationwide.

“It just puts Trikafta as a whole at risk,” Walker said. “It would start here, but it could create a ripple effect.”

Cystic fibrosis is a genetic condition that causes the body to produce thick, sticky mucus that clogs the lungs and digestive system, leading to lung damage, infections, and malnutrition. It is a progressive disease that results in irreversible lung damage and a median age of death of 34 years. There is no cure.

The rare disease affects fewer than 40,000 people in the U.S., including about 700 in Colorado. That means research and development costs are spread across a smaller number of patients than for more common conditions, such as the millions of people with heart disease or cancer.

Officials from Vertex Pharmaceuticals declined a request for an interview. But company spokesperson Sarah D’Souza emailed a statement saying that “the price of this medicine reflects its value to patients, the small number of people living with CF, the billions of dollars Vertex has invested to date to develop the first medicines to treat the underlying cause of CF, and the billions more we are investing in CF and other serious diseases.”

Setting an upper payment limit, the company said, could hinder access to drugs like Trikafta and curtail investment in scientific innovation and drug discovery.

State officials counter that Vertex and other drugmakers are resorting to fear-mongering to protect their profits.

Colorado Insurance Commissioner Michael Conway said that whenever the state talks about saving people money on health care, the affected entity — be it a hospital, insurance company, or drug manufacturer — cries foul and claims there will be an access problem.

“This is just, from my vantage point, the pharmaceutical industry trying to scare people,” he said.

Colorado’s Prescription Drug Affordability Board has been working for more than a year to sort through 604 drugs eligible for review, with 17 data points for each, to create a prioritized list. In the end, they decided to focus this year only on drugs that had no brand-name competition or generic alternatives that could lower costs.

Besides Trikafta, Enbrel, and Stelara, the board will review the affordability of the antiretroviral medication Genvoya, used to treat HIV, and another psoriasis treatment, Cosentyx.

Of those five, Trikafta had the highest average annual costs but the lowest five-year increase in price and the fewest patients taking it.

The board’s review of the five drugs will happen over its next three to four meetings this year and early next year, allowing all stakeholders — including patients, pharmacies, suppliers, and manufacturers — to provide feedback on whether the drugs are indeed unaffordable and what a reasonable price should be. Any cost limits wouldn’t take effect until next year at the earliest.

The board looked at what patients were paying out-of-pocket for their medicines, using a database that captures all the insurance claims in the state. But that data did not account for patient assistance programs, through which manufacturers reimburse patients for out-of-pocket costs. Such programs boost manufacturer sales of drugs because insurance covers most of the cost, and patients otherwise might not be able to afford them.

Through the first half of the year, Vertex reported profits of $1.6 billion, with 89% of its revenue coming from Trikafta (marketed as Kaftrio in Europe). At the beginning of the year, Vertex decreased copay assistance for people with cystic fibrosis, in what the company said was a response to insurers’ limiting patients’ ability to apply copay assistance to their deductibles.

Lila Cummings, director of the Colorado board, said its staff could not find any entity that collects data on patient assistance programs, so those figures were not available to the board. Once they begin reviewing the individual medications, board members will dig into what extra financial help patients are getting. Cummings also said the board is hoping manufacturers will convey in good faith what might prompt them to leave the Colorado market.

When Trikafta came up second on the Colorado board’s prioritized list of drugs eligible for review, patients and advocacy groups flooded the board with pleas to leave pricing for the medication and other drugs for rare diseases untouched.

“People are scared,” Walker said. “If you look at all the drugs out there, it’s one that has been so transformational that I think it will go down in history for how positively it’s impacted our population as a whole.”

According to the Cystic Fibrosis Foundation, lung exacerbations dropped 65% and lung transplants dropped 80% after the drug’s approval. More patients have been able to work, attend school, or start a family. Clinicians have reported a baby boom among patients who take Trikafta.

A study published this year showed that two-thirds of people with cystic fibrosis struggled with finances, experiencing debt, food insecurity, or trouble paying for household or health expenses. The survey was conducted in 2019, before the FDA approval of Trikafta.

Years ago, the Cystic Fibrosis Foundation invested in Aurora Biosciences, later acquired by Vertex Pharmaceuticals, to promote development of cystic fibrosis therapies. The foundation completed the sale of its royalty rights in 2020.

Mary Dwight, chief policy and advocacy officer for the Cystic Fibrosis Foundation, said the board should “ensure its review of Trikafta accounts for the overall value this drug has for someone with CF, including the impact on an individual’s long-term health and well-being.”

There is no guarantee that the Colorado board will take action on Trikafta. State officials have stressed that board members are solely focused on improving access and wouldn’t jeopardize the availability of the medication.

“We have a history of being able to save people money on health care that doesn’t lead to access problems,” Conway said. “We’re not talking about these companies losing money at all; we’re talking about making it more affordable so that more Coloradans can get access to the pharmaceutical needs that they have.”

But Walker remains unconvinced.

“They had so much testimony on their call and they still selected Trikafta,” she said. “Everyone was just saying how important this drug is, and it didn’t matter. It still got pushed through.”

By: Markian Hawryluk
Title: A Move to Cut Drug Prices Has Patients With Rare Diseases Worried
Sourced From: kffhealthnews.org/news/article/a-move-to-cut-drug-prices-has-patients-with-rare-diseases-worried/
Published Date: Wed, 30 Aug 2023 09:00:00 +0000

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US Judge Names Receiver To Take Over California Prisons’ Mental Health Program

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kffhealthnews.org – Don Thompson – 2025-03-20 12:46:00

SACRAMENTO, Calif. — A judge has initiated a federal court takeover of California’s troubled prison mental health system by naming the former head of the Federal Bureau of Prisons to serve as receiver, giving her four months to craft a plan to provide adequate care for tens of thousands of prisoners with serious mental illness.

Senior U.S. District Judge Kimberly Mueller issued her order March 19, identifying Colette Peters as the nominated receiver. Peters, who was Oregon’s first female corrections director and known as a reformer, ran the scandal-plagued federal prison system for 30 months until President Donald Trump took office in January. During her tenure, she closed a women’s prison in Dublin, east of Oakland, that had become known as the “rape club.”

Michael Bien, who represents prisoners with mental illness in the long-running prison lawsuit, said Peters is a good choice. Bien said Peters’ time in Oregon and Washington, D.C., showed that she “kind of buys into the fact that there are things we can do better in the American system.”

“We took strong objection to many things that happened under her tenure at the BOP, but I do think that this is a different job and she’s capable of doing it,” said Bien, whose firm also represents women who were housed at the shuttered federal women’s prison.

California corrections officials called Peters “highly qualified” in a statement, while Gov. Gavin Newsom’s office did not immediately comment. Mueller gave the parties until March 28 to show cause why Peters should not be appointed.

Peters is not talking to the media at this time, Bien said. The judge said Peters is to be paid $400,000 a year, prorated for the four-month period.

About 34,000 people incarcerated in California prisons have been diagnosed with serious mental illnesses, representing more than a third of California’s prison population, who face harm because of the state’s noncompliance, Mueller said.

Appointing a receiver is a rare step taken when federal judges feel they have exhausted other options. A receiver took control of Alabama’s correctional system in 1976, and they have otherwise been used to govern prisons and jails only about a dozen times, mostly to combat poor conditions caused by overcrowding. Attorneys representing inmates in Arizona have asked a judge to take over prison health care there.

Mueller’s appointment of a receiver comes nearly 20 years after a different federal judge seized control of California’s prison medical system and installed a receiver, currently J. Clark Kelso, with broad powers to hire, fire, and spend the state’s money.

California officials initially said in August that they would not oppose a receivership for the mental health program provided that the receiver was also Kelso, saying then that federal control “has successfully transformed medical care” in California prisons. But Kelso withdrew from consideration in September, as did two subsequent candidates. Kelso said he could not act “zealously and with fidelity as receiver in both cases.”

Both cases have been running for so long that they are now overseen by a second generation of judges. The original federal judges, in a legal battle that reached the U.S. Supreme Court, more than a decade ago forced California to significantly reduce prison crowding in a bid to improve medical and mental health care for incarcerated people.

State officials in court filings defended their improvements over the decades. Prisoners’ attorneys countered that treatment remains poor, as evidenced in part by the system’s record-high suicide rate, topping 31 suicides per 100,000 prisoners, nearly double that in federal prisons.

“More than a quarter of the 30 class-members who died by suicide in 2023 received inadequate care because of understaffing,” prisoners’ attorneys wrote in January, citing the prison system’s own analysis. One prisoner did not receive mental health appointments for seven months “before he hanged himself with a bedsheet.”

They argued that the November passage of a ballot measure increasing criminal penalties for some drug and theft crimes is likely to increase the prison population and worsen staffing shortages.

California officials argued in January that Mueller isn’t legally justified in appointing a receiver because “progress has been slow at times but it has not stalled.”

Mueller has countered that she had no choice but to appoint an outside professional to run the prisons’ mental health program, given officials’ intransigence even after she held top officials in contempt of court and levied fines topping $110 million in June. Those extreme actions, she said, only triggered more delays.

The 9th U.S. Circuit Court of Appeals on March 19 upheld Mueller’s contempt ruling but said she didn’t sufficiently justify calculating the fines by doubling the state’s monthly salary savings from understaffing prisons. It upheld the fines to the extent that they reflect the state’s actual salary savings but sent the case back to Mueller to justify any higher penalty.

Mueller had been set to begin additional civil contempt proceedings against state officials for their failure to meet two other court requirements: adequately staffing the prison system’s psychiatric inpatient program and improving suicide prevention measures. Those could bring additional fines topping tens of millions of dollars.

But she said her initial contempt order has not had the intended effect of compelling compliance. Mueller wrote as far back as July that additional contempt rulings would also be likely to be ineffective as state officials continued to appeal and seek delays, leading “to even more unending litigation, litigation, litigation.”

She went on to foreshadow her latest order naming a receiver in a preliminary order: “There is one step the court has taken great pains to avoid. But at this point,” Mueller wrote, “the court concludes the only way to achieve full compliance in this action is for the court to appoint its own receiver.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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Amid Plummeting Diversity at Medical Schools, a Warning of DEI Crackdown’s ‘Chilling Effect’

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kffhealthnews.org – Annie Sciacca – 2025-03-20 04:00:00

The Trump administration’s crackdown on DEI programs could exacerbate an unexpectedly steep drop in diversity among medical school students, even in states like California, where public universities have been navigating bans on affirmative action for decades. Education and health experts warn that, ultimately, this could harm patient care.

Since taking office, President Donald Trump has issued a handful of executive orders aimed at terminating all diversity, equity, and inclusion, or DEI, initiatives in federally funded programs. And in his March 4 address to Congress, he described the Supreme Court’s 2023 decision banning the consideration of race in college and university admissions as “brave and very powerful.”

Last month, the Education Department’s Office for Civil Rights — which lost about 50% of its staff in mid-March — directed schools, including postsecondary institutions, to end race-based programs or risk losing federal funding. The “Dear Colleague” letter cited the Supreme Court’s decision.

Paulette Granberry Russell, president and CEO of the National Association of Diversity Officers in Higher Education, said that “every utterance of ‘diversity’ is now being viewed as a violation or considered unlawful or illegal.” Her organization filed a lawsuit challenging Trump’s anti-DEI executive orders.

While California and eight other states — Arizona, Florida, Idaho, Michigan, Nebraska, New Hampshire, Oklahoma, and Washington — had already implemented bans of varying degrees on race-based admissions policies well before the Supreme Court decision, schools bolstered diversity in their ranks with equity initiatives such as targeted scholarships, trainings, and recruitment programs.

But the court’s decision and the subsequent state-level backlash — 29 states have since introduced bills to curb diversity initiatives, according to data published by the Chronicle of Higher Education — have tamped down these efforts and led to the recent declines in diversity numbers, education experts said.

After the Supreme Court’s ruling, the numbers of Black and Hispanic medical school enrollees fell by double-digit percentages in the 2024-25 school year compared with the previous year, according to the Association of American Medical Colleges. Black enrollees declined 11.6%, while the number of new students of Hispanic origin fell 10.8%. The decline in enrollment of American Indian or Alaska Native students was even more dramatic, at 22.1%. New Native Hawaiian or other Pacific Islander enrollment declined 4.3%.

“We knew this would happen,” said Norma Poll-Hunter, AAMC’s senior director of workforce diversity. “But it was double digits — much larger than what we anticipated.”

The fear among educators is the numbers will decline even more under the new administration.

At the end of February, the Education Department launched an online portal encouraging people to “report illegal discriminatory practices at institutions of learning,” stating that students should have “learning free of divisive ideologies and indoctrination.” The agency later issued a “Frequently Asked Questions” document about its new policies, clarifying that it was acceptable to observe events like Black History Month but warning schools that they “must consider whether any school programming discourages members of all races from attending.”

“It definitely has a chilling effect,” Poll-Hunter said. “There is a lot of fear that could cause institutions to limit their efforts.”

Numerous requests for comment from medical schools about the impact of the anti-DEI actions went unreturned. University presidents are staying mum on the issue to protect their institutions, according to reporting from The New York Times.

Utibe Essien, a physician and UCLA assistant professor, said he has heard from some students who fear they won’t be considered for admission under the new policies. Essien, who co-authored a study on the effect of affirmative action bans on medical schools, also said students are worried medical schools will not be as supportive toward students of color as in the past.

“Both of these fears have the risk of limiting the options of schools folks apply to and potentially those who consider medicine as an option at all,” Essien said, adding that the “lawsuits around equity policies and just the climate of anti-diversity have brought institutions to this place where they feel uncomfortable.”

In early February, the Pacific Legal Foundation filed a lawsuit against the University of California-San Francisco’s Benioff Children’s Hospital Oakland over an internship program designed to introduce “underrepresented minority high school students to health professions.”

Attorney Andrew Quinio filed the suit, which argues that its plaintiff, a white teenager, was not accepted to the program after disclosing in an interview that she identified as white.

“From a legal standpoint, the issue that comes about from all this is: How do you choose diversity without running afoul of the Constitution?” Quinio said. “For those who want diversity as a goal, it cannot be a goal that is achieved with discrimination.”

UC Health spokesperson Heather Harper declined to comment on the suit on behalf of the hospital system.

Another lawsuit filed in February accuses the University of California of favoring Black and Latino students over Asian American and white applicants in its undergraduate admissions. Specifically, the complaint states that UC officials pushed campuses to use a “holistic” approach to admissions and “move away from objective criteria towards more subjective assessments of the overall appeal of individual candidates.”

The scrutiny of that approach to admissions could threaten diversity at the UC-Davis School of Medicine, which for years has employed a “race-neutral, holistic admissions model” that reportedly tripled enrollment of Black, Latino, and Native American students.

“How do you define diversity? Does it now include the way we consider how someone’s lived experience may be influenced by how they grew up? The type of school, the income of their family? All of those are diversity,” said Granberry Russell, of the National Association of Diversity Officers in Higher Education. “What might they view as an unlawful proxy for diversity equity and inclusion? That’s what we’re confronted with.”

California Attorney General Rob Bonta, a Democrat, recently joined other state attorneys general to issue guidance urging that schools continue their DEI programs despite the federal messaging, saying that legal precedent allows for the activities. California is also among several states suing the administration over its deep cuts to the Education Department.

If the recent decline in diversity among newly enrolled students holds or gets worse, it could have long-term consequences for patient care, academic experts said, pointing toward the vast racial disparities in health outcomes in the U.S., particularly for Black people.

A higher proportion of Black primary care doctors is associated with longer life expectancy and lower mortality rates among Black people, according to a 2023 study published by the JAMA Network.

Physicians of color are also more likely to build their careers in medically underserved communities, studies have shown, which is increasingly important as the AAMC projects a shortage of up to 40,400 primary care doctors by 2036.

“The physician shortage persists, and it’s dire in rural communities,” Poll-Hunter said. “We know that diversity efforts are really about improving access for everyone. More diversity leads to greater access to care — everyone is benefiting from it.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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Tribal Health Leaders Say Medicaid Cuts Would Decimate Health Programs

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kffhealthnews.org – Jazmin Orozco Rodriguez – 2025-03-19 04:00:00

As Congress mulls potentially massive cuts to federal Medicaid funding, health centers that serve Native American communities, such as the Oneida Community Health Center near Green Bay, Wisconsin, are bracing for catastrophe.

That’s because more than 40% of the about 15,000 patients the center serves are enrolled in Medicaid. Cuts to the program would be detrimental to those patients and the facility, said Debra Danforth, the director of the Oneida Comprehensive Health Division and a citizen of the Oneida Nation.

“It would be a tremendous hit,” she said.

The facility provides a range of services to most of the Oneida Nation’s 17,000 people, including ambulatory care, internal medicine, family practice, and obstetrics. The tribe is one of two in Wisconsin that have an “open-door policy,” Danforth said, which means that the facility is open to members of any federally recognized tribe.

But Danforth and many other tribal health officials say Medicaid cuts would cause service reductions at health facilities that serve Native Americans.

Indian Country has a unique relationship to Medicaid, because the program helps tribes cover chronic funding shortfalls from the Indian Health Service, the federal agency responsible for providing health care to Native Americans.

Medicaid has accounted for about two-thirds of third-party revenue for tribal health providers, creating financial stability and helping facilities pay operational costs. More than a million Native Americans enrolled in Medicaid or the closely related Children’s Health Insurance Program also rely on the insurance to pay for care outside of tribal health facilities without going into significant medical debt. Tribal leaders are calling on Congress to exempt tribes from cuts and are preparing to fight to preserve their access.

“Medicaid is one of the ways in which the federal government meets its trust and treaty obligations to provide health care to us,” said Liz Malerba, director of policy and legislative affairs for the United South and Eastern Tribes Sovereignty Protection Fund, a nonprofit policy advocacy organization for 33 tribes spanning from Texas to Maine. Malerba is a citizen of the Mohegan Tribe.

“So we view any disruption or cut to Medicaid as an abrogation of that responsibility,” she said.

Tribes face an arduous task in providing care to a population that experiences severe health disparities, a high incidence of chronic illness, and, at least in western states, a life expectancy of 64 years — the lowest of any demographic group in the U.S. Yet, in recent years, some tribes have expanded access to care for their communities by adding health services and providers, enabled in part by Medicaid reimbursements.

During the last two fiscal years, five urban Indian organizations in Montana saw funding growth of nearly $3 million, said Lisa James, director of development for the Montana Consortium for Urban Indian Health, during a webinar in February organized by the Georgetown University Center for Children and Families and the National Council of Urban Indian Health.

The increased revenue was “instrumental,” James said, allowing clinics in the state to add services that previously had not been available unless referred out for, including behavioral health services. Clinics were also able to expand operating hours and staffing.

Montana’s five urban Indian clinics, in Missoula, Helena, Butte, Great Falls, and Billings, serve 30,000 people, including some who are not Native American or enrolled in a tribe. The clinics provide a wide range of services, including primary care, dental care, disease prevention, health education, and substance use prevention.

James said Medicaid cuts would require Montana’s urban Indian health organizations to cut services and limit their ability to address health disparities.

American Indian and Alaska Native people under age 65 are more likely to be uninsured than white people under 65, but 30% rely on Medicaid compared with 15% of their white counterparts, according to KFF data for 2017 to 2021. More than 40% of American Indian and Alaska Native children are enrolled in Medicaid or CHIP, which provides health insurance to kids whose families are not eligible for Medicaid. KFF is a health information nonprofit that includes KFF Health News.

A Georgetown Center for Children and Families report from January found the share of residents enrolled in Medicaid was higher in counties with a significant Native American presence. The proportion on Medicaid in small-town or rural counties that are mostly within tribal statistical areas, tribal subdivisions, reservations, and other Native-designated lands was 28.7%, compared with 22.7% in other small-town or rural counties. About 50% of children in those Native areas were enrolled in Medicaid.

The federal government has already exempted tribes from some of Trump’s executive orders. In late February, Department of Health and Human Services acting general counsel Sean Keveney clarified that tribal health programs would not be affected by an executive order that diversity, equity, and inclusion government programs be terminated, but that the Indian Health Service is expected to discontinue diversity and inclusion hiring efforts established under an Obama-era rule.

HHS Secretary Robert F. Kennedy Jr. also rescinded the layoffs of more than 900 IHS employees in February just hours after they’d received termination notices. During Kennedy’s Senate confirmation hearings, he said he would appoint a Native American as an assistant HHS secretary. The National Indian Health Board, a Washington, D.C.-based nonprofit that advocates for tribes, in December endorsed elevating the director of the Indian Health Service to assistant secretary of HHS.

Jessica Schubel, a senior health care official in Joe Biden’s White House, said exemptions won’t be enough.

“Just because Native Americans are exempt doesn’t mean that they won’t feel the impact of cuts that are made throughout the rest of the program,” she said.

State leaders are also calling for federal Medicaid spending to be spared because cuts to the program would shift costs onto their budgets. Without sustained federal funding, which can cover more than 70% of costs, state lawmakers face decisions such as whether to change eligibility requirements to slim Medicaid rolls, which could cause some Native Americans to lose their health coverage.

Tribal leaders noted that state governments do not have the same responsibility to them as the federal government, yet they face large variations in how they interact with Medicaid depending on their state programs.

President Donald Trump has made seemingly conflicting statements about Medicaid cuts, saying in an interview on Fox News in February that Medicaid and Medicare wouldn’t be touched. In a social media post the same week, Trump expressed strong support for a House budget resolution that would likely require Medicaid cuts.

The budget proposal, which the House approved in late February, requires lawmakers to cut spending to offset tax breaks. The House Committee on Energy and Commerce, which oversees spending on Medicaid and Medicare, is instructed to slash $880 billion over the next decade. The possibility of cuts to the program that, together with CHIP, provides insurance to 79 million people has drawn opposition from national and state organizations.

The federal government reimburses IHS and tribal health facilities 100% of billed costs for American Indian and Alaska Native patients, shielding state budgets from the costs.

Because Medicaid is already a stopgap fix for Native American health programs, tribal leaders said it won’t be a matter of replacing the money but operating with less.

“When you’re talking about somewhere between 30% to 60% of a facility’s budget is made up by Medicaid dollars, that’s a very difficult hole to try and backfill,” said Winn Davis, congressional relations director for the National Indian Health Board.

Congress isn’t required to consult tribes during the budget process, Davis added. Only after changes are made by the Centers for Medicare & Medicaid Services and state agencies are tribes able to engage with them on implementation.

The amount the federal government spends funding the Native American health system is a much smaller portion of its budget than Medicaid. The IHS projected billing Medicaid about $1.3 billion this fiscal year, which represents less than half of 1% of overall federal spending on Medicaid.

“We are saving more lives,” Malerba said of the additional services Medicaid covers in tribal health care. “It brings us closer to a level of 21st century care that we should all have access to but don’t always.”

This article was published with the support of the Journalism & Women Symposium (JAWS) Health Journalism Fellowship, assisted by grants from The Commonwealth Fund.

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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