After NIH staffing cuts, cancer patient in clinical trial worries she may lose crucial time

With the future of her cancer treatment in limbo, Natalie Phelps doesn’t know how much longer she can wait. Last month, after months of seeking treatment options for her colorectal cancer, the 43-year-old mother of two was accepted into an ongoing study at the National Institutes of Health. She thought the research would allow her to receive an experimental immunotherapy – but she now faces an excruciating wait and an equally excruciating choice. First, her tumor must grow to at least 1 centimeter in size in order to receive treatment, she said. But even after she meets that criteria, an abrupt reduction in the NIH workforce means her treatment will take much longer to develop than initially expected. She’s worried that that extra time may make a huge difference in her health. The Trump administration has been conducting a review of funding and a restructuring of the US Department of Health and Human Services, resulting in massive waves of job cuts across federal health agencies under HHS, including the NIH, the nation’s medical research agency. Part of the HHS transformation involves decreasing the NIH workforce by about 1,200 “by centralizing procurement, human resources, and communications across its 27 institutes and centers,” according to the Trump administration. The administration announced in late March that the HHS restructuring would save taxpayers $1.8 billion per year through an overall reduction of about 10,000 full-time employees. Phelps said that some of the scientists working on her NIH trial were among the cuts. Phelps was diagnosed with stage IV colorectal cancer in 2020, at age 38. She was nearly eight months pregnant at the time and originally thought her symptoms – abdominal pain, irregular bowel movements and mucus in her stool – were probably due to pregnancy or hemorrhoids. But as her symptoms worsened, she had a colonoscopy that found a tumor in her rectum. Further testing confirmed that it was cancer and that it had spread to her liver. Phelps has had surgery to remove the initial tumor, radiation therapy, three liver surgeries and 48 rounds of chemotherapy. Yet the cancer has continued to spread, she said, which is why she has been eager to try immunotherapy through the NIH trial – and is worried about the wait. Trial delay ‘could cost them their life’ Immunotherapy is a form of cancer treatment that harnesses a person’s own immune cells to target and fight the disease. The NIH trial specifically involves a T-cell receptor-based therapy in which Phelps’ immune cells were collected through a blood draw, she said. Once her tumor grows to meet the criteria, the cells will be engineered to target her cancer, she said. But the time it may take to engineer the cells for that next step has expanded from four to eight weeks because there are not as many researchers working on the trial as before the NIH staff cuts, Phelps said. “So here’s the tricky part: Should I continue staying off chemo and hope a tumor grows to meet the 1-centimeter threshold, or give up on clinical trials for now?” Phelps said. Giving up on the trials would mean a return to traditional chemotherapy and radiation to treat her cancer. She was told that the NIH team will work to engineer her cells at a faster rate than others in the trial so it won’t take eight weeks, but the process will still take weeks. Overall, “going from four to eight weeks is a huge deal for people with metastatic cancer,” Phelps said, adding that it could lead to further complications or even be life-threatening. “Just to give you a personal example, at the end of March, my scan showed I had disease that was stable, and my blood work showed that my tumor antigens were coming down. It was at a number of 43 for something called a CEA,” Phelps said. This carcinoembryonic antigen test measures levels of the CEA protein in the blood, as certain cancers like colorectal may cause high levels. “One month later, my disease had spread to my bones, all of my lymph nodes, and my CEA marker was 203. That’s in one month, in four weeks,” she said. “For some patients, it might not be a huge deal. For other patients, like me, it is, and it could cost them their life.” The reductions in NIH funding and staff are happening at a time when colorectal cancer cases have been rising among younger adults. A report released in 2023 by the American Cancer Society said that the proportion of colorectal cancer cases among adults younger than 55 increased from 11% in 1995 to 20% in 2019. “The rates of cancer amongst people younger than 50 are on the rise, and they tend to be aggressive and later-stage cancers,” Phelps said. “So it makes zero sense, if you care about keeping America healthy, to reduce your medical research at a time when you have cancer rates rising in your younger population that are the ones working and driving the economy.” Phelps added that if she could wave a magic wand, she would wish for “all the cancer research to be restored to where it was before this administration started.” Federal health overhaul HHS “remains committed” to advancing cancer research, spokesperson Andrew Nixon said in an email. “HHS deeply values cancer research and remains committed to advancing life-saving scientific studies that improve patient care and outcomes to Make America Healthy Again,” he said. When plans for the restructuring of HHS were announced in late March, HHS Secretary Robert F. Kennedy Jr. described them as an effort to allow the department to do more at a lower cost to taxpayers. “This overhaul will be a win-win for taxpayers and for those that HHS serves,” he said. On Wednesday, Kennedy will face senators’ questions in a Senate Health, Education, Labor and Pensions Committee hearing about President Donald Trump’s proposed budget for HHS for fiscal year 2026. A new Senate HELP Committee minority staff report, released Tuesday and authored by Sen. Bernie Sanders, I-Vermont, found that the Trump administration cut $2.7 billion in NIH research funding in the first three months of this year – including a 31% reduction in cancer research funding from January through March compared with the same timeframe last year. In a post on X in response, HHS called Sanders’ report “unequivocally false” and “a politically motivated distortion that undermines the thousands of dedicated public health professionals across HHS, who remain steadfast in their commitment to delivering results for the American people.” The post added that HHS is “streamlining programs, eliminating redundancies, and – above all else – prioritizing gold standard science.” It’s estimated that at least 1 in 5 people with cancer in the US participate in some form of medical research. “Clinical trials are a key part of delivery of care to patients. At a large academic center, such as all the large cancer centers, clinical trials are deeply ingrained into patient care – and without clinical trials, advances in delivery of care to patients will not be made. It’s only through clinical trials that high-quality data about new treatments and cures can be developed,” said Dr. Dan Barouch, director of the Center for Virology and Vaccine Research at Beth Israel Deaconess Medical Center, who has been following the changes at the NIH. “I can also say that terminating multiyear research projects midway leads to a lot of waste of taxpayers’ dollars, because there has already been substantial investment in a project,” he said. “So if you end a study when it’s halfway done or three-quarters of the way done, then there’s no benefit to either science or to patients after there has already been substantial investment.”