For a decade, Linda Jacobs has fought breast cancer, gritting through radiation and immunotherapy treatments to keep her disease under control.
But two years ago, she took a turn for the worse, when on vacation in Florida, she suddenly started breaking out in blisters all over her chest.
“I couldn't have my arms down to my sides. I couldn't cross my arms over my chest. The pain was just so intense,” she said.
Jacobs' doctor diagnosed her with an aggressive form of angiosarcoma. Her prognosis was very poor, but she did have one promising option: a clinical trial going on at University of Iowa Health Care.
For 10 months, Jacobs travelled from her home in DeWitt to Iowa City to endure painful injections that led to side effects so severe that she decided to quit early.
“I had blistering, and I had dry mouth, and it affected my right eye, my vision. And I just didn't feel well, more than I could handle,” she said.
But the treatment paid off. More than a year later, Jacobs is still cancer free. She’s grateful for every moment she gets to spend with her husband, kids, grandchildren and dogs.
“Without the research program and having God in your life, I wouldn't be here today. And I know that because I'm living on borrowed time, and every day is a gift,” she said.
The Trump administration is making major cuts to federal agencies like the National Institutes of Health (NIH) as part of a broad government restructuring aimed at saving taxpayer dollars. But some worry these cuts could have drastic effects on the research and outreach programs aimed at lowering Iowa’s high cancer rates.
Iowa has one of the highest cancer rates in the country. While rates are falling overall in the U.S., Iowa is one of just a few states where the disease is on the rise. Experts don't know exactly why.
A disruption in the pipeline
Oncologists like George Weiner at the University of Iowa are trying to help. Weiner has spent his decades-long career researching cancer and running trials similar to the one Jacobs was on.
After 23 years, he stepped down as director of UI’s Holden Comprehensive Cancer Center in 2023 to go back to research full time. He said it’s a really exciting time in the field.
“We now are able to do amazing things with cancer immunotherapy that we couldn't have imagined when I started my career,” he said.
But Weiner’s worried because the federal government is trying to cut funding to the NIH and has laid off thousands of federal health and human services employees.
He said this is already disrupting the research pipeline, creating chaos and causing irreversible damage by delaying research and trials.
“When we can't predict the future and have an idea of what kind of funding we're going to have, what kind of studies are going to be permitted? It makes it very hard to do the work we need to do.”George Weiner, former director of the University of Iowa Holden Comprehensive Cancer Center
Weiner’s on the National Cancer Institute’s Board of Scientific Advisors, which helps direct where funding should go. He said several of the board’s meetings have been cancelled.
“When we can't predict the future and have an idea of what kind of funding we're going to have, what kind of studies are going to be permitted? It makes it very hard to do the work we need to do,” he said.
Richard Deming, the medical director of the MercyOne Cancer Center in Des Moines, fears cancer deaths could increase with funding delays and cuts, the way they did during the pandemic when many people missed routine screenings.
“We think that even a disruption of a year to four years could have a significant impact,” he said.
One of MercyOne’s federally-funded clinical trials focusing on the LGBTQ community was abruptly canceled earlier this year, which Deming said was very unusual.
“There was no statement, and the next day, you can't even find any evidence that that trial ever existed,” he said.
'We need young people'
Public health experts say they are also preparing for cuts.
Mary Charlton, the director of the Iowa Cancer Registry, which collects and analyzes data, said the registry has long been under pressure to cut costs from the NIH, where it gets most of its funding.
"We have reduced the size of the staff at the registry sizably over the last several years. As people retire, we don't replace them. We're trying to do more and more electronically,” she said.
Charlton worries any additional cuts now could mean she has to ask the state for funding or start charging hospitals for the data.
The progress of cancer research and data collection is one concern, but others worry the uncertainty makes it harder to find young people who want to do this work in Iowa.
One of the Iowa Cancer Consortium’s employees, a recent graduate who was part of a competitive Centers for Disease Control and Prevention public health fellowship program, was abruptly laid off earlier this year.
Though her termination was reversed, she had already moved on to another job out of state.
Kelly Wells Sittig, the executive director of the Iowa Cancer Consortium, said it was a loss for the whole state, noting one of the organization’s previous fellows chose to stay in Iowa to pursue a graduate degree.
“We need young people who are interested in health care and public health and cancer control to be coming into Iowa to work here,” she said. “And so that, to me, it represents a loss of that, or a signal of backwards movement.”
Some young people interested in cancer work say they’re considering leaving not only Iowa, but the country.
Ellen Voigt is studying to get a dual MD and Ph.D. at the University of Iowa with dreams of working in a large academic research center. She said she’s now debating doing her residency in Europe, where she sees more opportunity and investment in cancer research.
“I have to go to where I can be supported to do the career that I've been trained for. So it's just really disheartening,” she said.
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This story was updated at 6:15 p.m. on April 24, 2025. An earlier version misrepresented George Weiner's title in a pull quote. Weiner spoke to IPR as a university oncologist and not on behalf of the National Cancer Institute’s Board of Scientific Advisors.
