With the future of cancer treatment at Limbo, Natalie Phelps doesn’t know how long she can wait.
Last month, months after sought treatment options for her colorectal cancer, the two 43-year-old mothers were accepted into ongoing research at the National Institutes of Health. She believed that the study would allow her to receive experimental immunotherapy, but now faces an unbearable choice equally unbearable waiting.
First of all, her tumor must grow to at least 1 centimeter to receive treatment, she said. But even after she meets that standard, a sharp decline in the NIH workforce means that her treatment will take much longer than initially expected. She worries that the extra time may make a huge difference to her health.
The Trump administration is conducting a US Department of Health and Human Services funding and restructuring review, resulting in massive job cuts in federal health agencies under the HHS, including the NIH.
According to the Trump administration, some of the HHS transformations include “reducing the NIH workforce by centralizing procurement, personnel and communications across 27 labs and centers. The administration announced in late March that taxpayers will save $1.8 billion a year through an overall cut in around 10,000 full-time employees through the HHS restructuring.
Phelps said some of the scientists working on her NIH trial were one of the cuts.
Phelps was diagnosed with stage IV colorectal cancer in 2020 at the age of 38. She was pregnant for nearly eight months at the time, so the symptoms originally – abdominal pain, irregular intestinal movements, mucus was probably due to pregnancy or hemo bone. However, as her symptoms worsened, she underwent a colonoscopy to detect tumors in her rectum. Further testing confirmed that it was cancer and spread to the liver.
Phelps underwent surgery to remove early tumors, radiation therapy, three liver surgeries and 48 rounds of chemotherapy. But cancer continues to spread, she said. That’s why she wants to try immunotherapy through the NIH trial and is worried about waiting.
Immunotherapy is a type of cancer treatment that uses a person’s own immune cells to target and fight diseases. The NIH trials included T-cell receptor-based therapies in particular, including Phelps’ immune cells collected by blood collection, she said. Once her tumor grows and meets criteria, the cells are designed to target her cancer, she said.
However, as more researchers aren’t working on the test as much as before NIH staff cut, the time it took to design the cell for that next step has increased from four to eight weeks, Phelps said.
“So here’s the tricky part. Do you want to continue with chemotherapy and hope that the tumor will grow and meet the 1cm threshold, or will you give up on clinical trials for now?” Phelps said. Giving up the trial means returning to traditional chemotherapy and radiation to treat her cancer.
She was told that the NIH team works to design cells at a faster rate than the other teams under examination, so it doesn’t take eight weeks, but the process still takes a few weeks.
Overall, “It’s a big deal for people with metastatic cancer to be four to eight weeks,” Phelps said, adding that it could lead to more complications or even life-threatening.
“To give you a personal example, at the end of March, my scan showed I had a stable illness and my blood test showed my tumor antigen coming down. This cancer embryo embryo antigen test measurement measures the levels of CEA protein in the blood, as certain cancers, such as the colorectal, can cause high levels.
“A month later, my illness was my bones, all my lymph nodes, and my CEA marker was 203. That’s a month in four weeks,” she said. “For some patients, that may not be a big deal. For others like me, it could potentially take their lives.”
Cuts in NIH funding and staff are occurring at an increasing number of cases of colorectal cancer among young adults. According to a report published by the American Cancer Society in 2023, the proportion of cases of colon cancer among adults under the age of 55 increased from 11% in 1995 to 20% in 2019.
“The rate of cancer in people under the age of 50 is on the rise, and they tend to be aggressive and late stage cancer,” Phelps said. “So if you’re concerned about maintaining America’s health, it makes sense to reduce medical research when cancer rates are rising with young populations working and driving the economy.”
Phelps added that if she could swing the magic wand, “I hope that all cancer research before this administration began will recover to where it was.”
HHS is “continuedly committed” to advances in cancer research, spokesman Andrew Nixon said in an email.
“HHS has a deep appreciation of cancer research and remains committed to advances in life-saving scientific research that improves patient care and outcomes and brings America back to health,” he said.
When plans for a restructuring of HHS were announced in late March, HHS executive director Robert F. Kennedy Jr. described it as an effort to enable taxpayers to do more at a lower cost.
“This overhaul is advantageous for both taxpayers and those whom HHS serves,” he said.
On Wednesday, Kennedy faces questions from senators on the Senate’s Health, Education, Labor and Pensions Committee, hearing about the budget proposed by the 2026 budget president of HHS.
A new Senate Aid Committee Minority Staff Report, released Tuesday and written by Senator Bernie Sanders of I-Vermont, found that the Trump administration cut $2.7 billion in NIH research funding in the first three months of the year.
In a response to X’s post, HHS called Sanders’s report “clearly false,” and a “political motivational distortion that undermines the thousands of dedicated public health professionals across HHS who remain in their commitment to providing results for Americans.” In this post, HHS added that it is “rationalizing programs, eliminating redundancy, and above all prioritizing gold standard science.”
It is estimated that at least one in five people with cancer in the United States participates in some form of medical research.
“Clinical trials are an important part of delivering care to patients. At all large academic centers, such as large cancer centres, clinical trials are deeply ingrained in patient care. Without clinical trials, advances in patient care are not made. Deaconess Medical Center follows changes at NIH.
“With already there was a huge investment in the project, we can say that the end of Multyear Research Projects will lead to a waste of taxpayers’ dollars,” he said. “Therefore, if you finish the study when it’s done in the middle or three-quarters of the method is completed, then there is no profit for the science or the patient after already having a significant investment.”