Dr. Sterling Johnson of the University of Wisconsin-Madison speaks at a forum on NIH funding cuts conducted by U.S. Senate Democrats on Wednesday. (Photo courtesy of Sen. Tammy Baldwin's office)

Drastic funding cuts at the National Institutes of Health (NIH) have disrupted biomedical research, potentially setting back projects that could advance treatment and prevention efforts for cancer, Alzheimer’s disease and other major causes of illness and death, researchers and patients told Democratic Senators Wednesday.

“We are hearing from researchers, research institutions, and patients about the ongoing attacks on NIH,” said Sen. Tammy Baldwin (D-Wisconsin), at the start of a  two-and-a-half hour forum she chaired as the ranking Democrat on a Senate subcommittee that oversees NIH.

“Understandably, most are reluctant to publicly speak out because the Trump administration is actively extorting institutions of all types, including major research universities,” Baldwin said. “This administration is seeking to dismantle the NIH and destroy the hopes of millions of Americans who are counting on life-saving treatments and cures.”

Witnesses who testified Wednesday warned that with projects being canceled in midstream, years of research data would likely be wasted and the role of the NIH as the world’s leading funder of biomedical research was at risk of being displaced.

NIH-funded advances have contributed to reductions in death rates from cancer, heart attacks and stroke in the U.S., said Dr. Monica Bertagnolli, who was director of NIH in the Biden administration and stepped down in January.

“This progress would not have happened without taxpayer support,” Bertagnolli said.

But in the first two months of the Trump administration, she said, more than 300 grants have been terminated and $1.5 billion in funding has been delayed.

In the last year, Bertagnolli told Sen. Patty Murray (D-Washington), NIH identified women’s health as “a high priority area” and “launched many new programs to really begin to address the deficiencies that we’ve had in women’s health.” Since the change in administration, however, “nothing new has moved forward.”

Dr. Sterling Johnson, the associate director of the Wisconsin Alzheimer’s Disease Research Center and a professor at the University of Wisconsin, said NIH funding over the last two decades helped make it possible to diagnose Alzheimer’s disease through blood tests and brain imaging scans rather than having to wait until after the patient’s death to be certain.

The NIH also funded clinical trials on surgical procedures involving the brain that can slow symptoms of the condition, he said, as well as trials on potential preventive therapies.

“These discoveries are changing the way we diagnose and treat Alzheimer’s and related causes of dementia,” Johnson said, but there is growing concern about how to sustain those gains.

In the last few months, he said, there have been delays in peer review and funding approvals for some projects.

“There are proposed cuts that threaten major ongoing studies, including treatment trials, risking the loss of millions of dollars already invested and setting our patients back,” Johnson said. With cuts threatening to slow down studies, “we will lose ground on hard-won progress.”

Senators as well as witnesses recounted stories of research that was cut off that involved investigations of health disparities.

Poorer counties across the country have “a persistent problem with poorer outcomes for all kinds of health issues,” Bertagnolli said, with maternal and fetal health among the most visible. “And without targeting those particular populations to understand the reasons behind the disparities, how can we ever even begin to overcome them?”

Research that considered members of the LGBTQ+ community and how illness affects racial and ethnic groups differently have been recurring targets in the Trump administration NIH, several said.

Dr. Whitney Wharton, an Alzheimer’s researcher at Emory University, said the Trump administration’s NIH has canceled research projects that she and other colleagues were conducting on Alzheimer’s in racial and ethnic minority groups, including LGBTQ+ people.

Previous research by her lab found Black Americans were 64% more likely than non-Hispanic whites to get Alzheimer’s disease and are living with the disease longer, she said.

“The systematic elimination of these high-risk” groups of patients from research “will only serve to increase the total number of [Alzheimer’s] patients every year,” Wharton said. Understanding those disparities is especially important, she added, because with shifting demographics racial and ethnic minority groups will represent the majority of the population.

“These terminations will have very grave consequences for patients, for families, for communities, and for taxpayers,” Wharton said.

Wharton read from a letter she received Feb. 28 that canceled another project she was in the midst of.

“It cites transgender issues,” Wharton said. “And it says, ‘Research programs based on gender identity are often unscientific, have little identifiable return on investment and do nothing to enhance the health of many Americans. Many such studies ignore rather than seriously examine biological realities. It is a policy of NIH not to prioritize these research programs.’”

Sen. Sheldon Whitehouse (D-Rhode Island) said the cancelation of grants, such as one on mental health therapies for LGBTQ people and other on LGBTQ cancer survivors, appear to violate a federal court order blocking the NIH from withholding grants that were already in progress.

He urged panelists to let the senators know if funds aren’t released when they’re supposed to be. “We need to know when they’re jammed because you can’t believe anything that the Trump administration tells you about the progress of the funds unless the funds are actually flowing,” Whitehouse said.

Wharton and Johnson both said the turmoil for NIH-funded research was at risk of driving away a generation of researchers.

“These cuts are very, very devastating and they’re very scary for young investigators, for students, whether they’ve been affected or not,” Wharton said. “These young scientists may leave research altogether because they’re nervous.”

Oneida Community Health Center in Hobart, Wisconsin. | Photo by Jason Kerzinski for Wisconsin Examiner

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.

This article first appeared on KFF Health News and is republished here under a Creative Commons license.