Since President Donald Trump took office a mere three weeks ago, he has sent out an extreme array of executive orders, proclamations, memoranda and pardons, doing nearly everything in his power to reverse the progress former President Joe Biden made during his term. Among Trump’s most alarming shifts is his administration’s approach to health and science, especially his decision to cut billions of dollars of funding from the National Institutes of Health (NIH). These cuts are not just numbers on a sheet — they are devastating blows to essential medical research, halting much-needed initiatives into rare disorders like the one my sister has: neurofibromatosis (NF).
For some background, the National Institute of Neurological Disorders and Stroke states, “Neurofibromatosis is not a single medical disorder. It refers to three different conditions involving the development of tumors that may affect the brain, spinal cord, and the nerves that send signals between the brain and spinal cord and all other parts of the body. Most tumors are non-cancerous (benign), although some may become cancerous (malignant).”
NIH has played a pivotal role in advancing research for NF, offering hope for a cure to my sister and our family, as well as many others like ours. NIH spearheaded one of the most monumental research projects into NF, resulting in the Food and Drug Administration (FDA) approval of a treatment for type one of the disorder called selumetinib (Koselugo). This milestone directly resulted from the hard work of scientists and medical efforts at the institute using significant federal funding. With Trump cutting billions of dollars from NIH, the future of breakthrough research like this is under attack.
Without necessary funding, life-changing treatments like selumetinib might not be possible for patients suffering from NF, leaving countless families like mine with diminishing hope for future cures. In an effort to do as much damage control as possible, NIH is focusing on cutting indirect costs related to research like buildings, utilities and equipment.
In an announcement NIH put out Feb. 7, they stated, “The United States should have the best medical research in the world. It is accordingly vital to ensure that as many funds as possible go towards direct scientific research costs rather than administrative overhead.” With this announcement, the NIH proposes dropping the current average rates grants pay for indirect research from 30% to 15%.
According to National Public Radio (NPR), these cuts will be especially detrimental to medical research at universities, medical schools, research hospitals and other scientific institutions, bringing about a drastic change in facilities. To put it into perspective, Harvard currently receives 68% and Yale 67% of their NIH grant funding to cover indirect costs. Slashing this support in half leaves medical researchers desperate to find additional funding from other organizations to cover operational expenses, deflecting crucial attention and resources away from actual research.
For people with rare disorders and diseases, like my sister, these cuts are not just an inconvenience — the reality is delayed progress, limited clinical trials and fewer treatment options. We cannot afford to have these severe budget cuts in a world that already prioritizes funding for common disorders that companies can make more profits off of than for rare diseases and disorders with smaller market potential. The NIH has long been a safe haven for people with rare disorders, filling in the gaps where private companies fail to.
However, Trump seems to prioritize the needs of capitalist, profit-hungry companies over helping families and patients in-need. “This is a surefire way to cripple lifesaving research and innovation,” Matt Owens, president of the Council on Governmental Relations, which represents research institutes and university medical centers, said in a statement. He continued, “We urge NIH leaders to rescind this dangerous policy before its harms are felt by Americans.”
If the Trump administration does not reverse this detrimental funding cut, Congress needs to step in and pass emergency funding legislation, specifically allocating funding to protect ongoing research for rare disorders at NIH. One of the biggest advocates to Congress is the Association of American Medical Colleges (AAMC), which regularly meets with congressional representatives to discuss the importance of NIH-funded research. The type of funding that the AAMC advocates for supported over 300,000 researchers at more than 2,500 institutions in all 50 states and Washington, D.C., in 2024.
Chief Scientific Officer at the AAMC, Elena Fuentes-Afflick, MD, MPH stated, “Patients everywhere benefit from the extraordinary medical research made possible through NIH — research that is taking place at academic medical centers across the country.” If you feel strongly about supporting patients and families dealing with rare disorders, I urge you to reach out to your representative and demand that they take action to restore NIH funding. While there will always be time for companies to make more profit, families like mine cannot and should not have to wait for a cure.
Hailey Baker, FCRH’27, is a political science major from Gaithersburg, Md.
