Natalie Phelps, who has stage 4 colorectal cancer, has raised the alarm over how patients in the agency\u2019s clinical trials are facing setbacks in treatment<\/p>\n\n\n\n
A 43-year-old woman and mother of two with advanced cancer says she is experiencing life-or-death delays in treatment because of the Trump administration\u2019s cuts to the National Institutes of Health (NIH).<\/p>\n\n\n\n
Natalie Phelps, who has stage 4 colorectal cancer, has spoken publicly, raising the alarm about a setback in care for herself and others who are part of clinical trials run by the agency. Her story has made it into congressional hearings and spurred a spat between a Democratic senator and the US health secretary, Robert F Kennedy Jr<\/a>. Behind the scenes, she and others are advocating to get her treatment started sooner.<\/p>\n\n\n\n So far, Phelps has been told that her treatment, which should have started around mid-June, will not begin until after mid-July.<\/p>\n\n\n\n \u201cI\u2019ve done everything I can do,\u201d Phelps, who lives in Washington state, told the Guardian. \u201cThere\u2019s nothing else I can do. I\u2019m really just out of options. There\u2019s very limited treatments approved for colorectal cancer.\u201d<\/p>\n\n\n\n Phelps is one of many Americans whose lives have been disrupted or altered by the ongoing cuts to government services made by the Trump administration\u2019s so-called \u201cdepartment of government efficiency\u201d, or Doge. Some NIH scientists have lost their jobs, and others have seen their grants ended. Researchers told the Associated Press<\/a> that cuts to the agency and its programs would end treatment for cancer patients and delay cures and treatment discoveries.<\/p>\n\n\n\n Phelps was diagnosed in 2020, soon after giving birth to her second child, and after her symptoms were dismissed<\/a> by doctors for months. Since then, she\u2019s gone through 48 rounds of chemotherapy. She had an 18-hour surgery to remove her primary tumor, plus two follow-up liver surgeries. She\u2019s had radiation therapy to her brain, leg and pelvis.<\/p>\n\n\n\n Dr Steven Rosenberg\u2019s cell-based immunotherapy trial at the NIH offered hope. The treatment uses a person\u2019s own cells to fight cancer and has seen some promise for patients with colon, rectal and GI cancers. This was deemed an exciting step by the medical community because the process had previously worked on blood cancers, but not solid cancers, the Washington Post reported<\/a>.<\/p>\n\n\n\n But these promising developments are coming alongside cuts to federal agencies, including ones that have affected these trials, Rosenberg has publicly confirmed. The trial itself was not cut, but it is experiencing delays because of staff reductions, Rosenberg has said<\/strong>.<\/p>\n\n\n\n Phelps passed the initial medical steps to enter the trial in March, then flew to Bethesda, Maryland, at the end of April this year. There, they drew her blood to use to engineer T-cells for her treatment, which she previously was told takes about four weeks. Instead, she was told it would now take eight weeks, which the doctors said was because of funding cuts imposed by Doge.<\/p>\n\n\n\n \u201cThat got me motivated enough to start to really panic, because my cancer between March and April really exploded and progressed to my lymph nodes and my bones,\u201d she said. \u201cMy oncologist was very anxious about the difference between four and eight weeks could make, waiting for those treatment products.\u201d<\/p>\n\n\n\n One month can make a huge difference in late-stage cancer treatment, but the delay also brought up major decisions for Phelps. She wouldn\u2019t be able to do chemo for a month before the treatment began. With a delay, she could maybe do chemo for a bit, then stop a month before.<\/p>\n\n\n\n Then there was the size of her tumors \u2013 which would become the subject of the spat in a congressional hearing. She needed a tumor of at least one centimeter in size to start the trial, or an exemption \u2013 her disease was spreading in the number of tumors, not in one large tumor. The tumor would help scientists track how the treatment was working.<\/p>\n\n\n\n If she underwent chemo before doing a final scan needed to start the trial, tumors could shrink, affecting her eligibility. But if she waited for two months and did nothing, the disease could keep spreading. Her oncologist thought maybe the trial would have to be placed on the back burner, given the extended timeline.<\/p>\n\n\n\n Phelps posted on social media, explaining her predicament. After seeing her videos, friends suggested she reach out to her members of Congress, who could intervene with the agency and help her get treated sooner.<\/p>\n\n\n\n The office of Patty Murray, a Washington Democratic senator, got involved. On 14 May, Murray questioned Kennedy during a Senate health, education, labor and pensions committee hearing<\/a>, sharing Phelps\u2019 story and asking how many staff have been cut from the NIH\u2019s clinical center. Kennedy said to reach out to his office for specifics on Phelps and claimed no cuts had been made to clinical trials. \u201cI don\u2019t think that should happen to anybody,\u201d he said.<\/p>\n\n\n\n Later in the hearing, though, Kennedy said his office had looked into the case and claimed that Phelps was \u201cmedically ineligible\u201d for the trial, so her case had nothing to do with staff reductions. \u201cThat was a canard,\u201d he told the committee, and he told Murray: \u201cYou don\u2019t care. You don\u2019t care about Natalie.\u201d The exchange became<\/a> a Fox News headline.<\/p>\n\n\n\n It was a \u201cspurious statement\u201d to say she was medically ineligible, Phelps said \u2013 she was waiting for one final scan to see if her tumor was one centimeter, but had met all other criteria. She had a scan the day after the hearing, which showed her tumor had now grown large enough to qualify.<\/p>\n\n\n\n \u201cIt\u2019s been so much extra stress. The night after the hearing, I threw up all night. I barely made it to my scan because I was so stressed out,\u201d she said. \u201cIt\u2019s been very intense emotionally and an extreme added stress that nobody needs. Cancer<\/a> just shouldn\u2019t be political.\u201d<\/p>\n\n\n\n In a Senate appropriations hearing the next week<\/a>, Kennedy again argued with Murray, saying it was \u201cuntrue\u201d that Phelps\u2019 care was delayed. In statements after the second exchange, Murray said her staff has been in \u201cconstant touch\u201d with career staff at the NIH and the FDA to get help on Phelps\u2019 case.<\/p>\n\n\n\n \u201cI still have no answer about how many NIH clinical staff have been fired,\u201d Murray\u2019s 20 May statement says. \u201cI still have no answer why Natalie was told by her NIH doctor that her care was being delayed due to staffing cuts. For weeks, my staff has been demanding answers about agency staffing cuts.\u201d<\/p>\n\n\n\n In a statement, a spokesperson for the Department of Health<\/a> and Human Services (HHS) said cancer research is a \u201chigh priority\u201d for the NIH and HHS.<\/p>\n\n\n\n \u201cOngoing investments reflect our dedication to addressing both urgent and long-term health challenges,\u201d the agency said. \u201cThere have been no cuts to clinical trials.\u201d<\/p>\n\n\n\n In another statement sent after publication, the agency said the claim that patients were seeing treatment delays because of reductions in force was \u201cfalse\u201d.<\/p>\n\n\n\n \u201cNo clinical trials have been cut. No personnel involved in direct patient care were affected by the RIF,\u201d the agency said.<\/p>\n\n\n\n \u201cClinical trials continue to be conducted in accordance with established protocols and patient safety standards. NIH investigators are responsible for ensuring trials are appropriately staffed, that patient enrollment aligns with trial capacity, and that participants are fully informed of timelines and potential risks of experimental treatments. We do not comment on individual patient cases in accordance with the Privacy Act and to protect patient confidentiality.\u201d<\/p>\n\n\n\n But Rosenberg, the doctor leading the trial Phelps is in, confirmed to the Washington Post<\/a> in April that two patients were delayed care because of staff cuts and \u201cpurchasing slowdowns\u201d, and these delays were confirmed before big layoffs hit the agency.<\/p>\n\n\n\n