Jim Higgins , 2025-04-25 08:30:00
I was born with an inherited cancer syndrome, Li-Fraumeni syndrome (LFS). A mutation on my Tp53 cancer suppressor gene makes me susceptible to a host of cancers. Two of my daughters died of LFS-related cancers, as did my father and sister. People with LFS have an approximately 50% chance of developing some type of cancer by age 40, and up to a 90% chance by age 60. There is no cure. Our best hope right now is to try to catch any malignancies in the early stages.
Why am I telling you this? One of the most important institutions under the DOGE chainsaw is the National Institutes of Health, the global jewel of science and health care that exports cures and discoveries to benefit people around the world. Cuts to this revered institution have cost people their livelihoods — but it will also literally cost people their lives. People like my family members and me.
NIH is the single largest public funder of biomedical research in the world, with an annual budget of some $47 billion, awarding over 60,000 research grants a year. U.S. biomedical research leads the world in discoveries. A recent study showed that NIH-funded research contributed to nearly all drugs approved by the FDA during the period of 2010-2019. These drugs are providing cures, mediating illness, and providing hope to men, women, and children throughout the world. The NIH’s National Cancer Institute (NCI) received $7.2 billion in fiscal year 2024, which went to basic research, clinical trials, and genomics.
Of the over 7,000 rare diseases currently identified, 95% do not have an FDA-approved treatment or cure. This is where I come in. Dana-Farber Cancer Institute in Boston, where I am treated, is an NCI-designated Comprehensive Cancer Center. It is world-renowned for its cutting-edge research, including at its Li-Fraumeni Syndrome and TP53 Center. It receives significant funding from NIH for its many and varied projects. Every day, I expect to hear about research being put on hold.
The mutation of the Tp53 gene not only causes LFS but is a catalyst for a vast number of cancers, including breast, lung, colorectal, ovarian, and brain tumors. The NIH has been a leader in Tp53 research since its identification in 1979. LFS itself was discovered in 1969 by Frederick Li and Joseph Fraumeni, physicians who were working at the NCI. Today, studies are underway to better understand the gene’s role in repairing DNA damage and why cells die. More exciting research involves targeted therapies and new diagnostic tools, such as liquid biopsies. Breakthroughs will have a significant impact on cancer diagnosis, treatment, and cures worldwide.
The cobalt-60 therapy my father received in 1965, with its intense gamma radiation, was notorious for serious side effects, both localized and systemic. Years of research and development have led to modern therapies, with more precise tumor targeting, fewer side effects, and improved treatment outcomes.
Likewise, the highly toxic and debilitating chemotherapy my 12-year-old daughter was forced to endure in the 1990s has evolved, again through ongoing research, into a much less severe and more manageable experience for patients today. LFS research has greatly expanded our understanding of the syndrome, resulting in better screening, early detection, and treatment protocols.
The Trump administration’s drastic funding cuts will seriously hamper research programs, completely shut down others, end clinical trials that for many are a last hope, and freeze promising drugs in the pipeline, potentially setting research and treatment programs for LFS back years or even decades.
Since the death of our second daughter, my wife, Kathy and I have volunteered for the Li-Fraumeni Syndrome Association, an international patient advocacy community of Li-Fraumeni Syndrome families, clinicians and researchers, formed in 2010, following the first LFS symposium, which took place at, yes, the National Institutes of Health in Bethesda, Maryland. At that time, only a few hundred affected families had been identified worldwide. Today, estimates suggest that as many as 1 in 3,000 to 1 in 5,000 people have LFS. If true, that would mean 69,000 Americans with the condition, and although our individual journeys may be different, in some ways we’re all the same, living in a constant state of unease, wondering when the next cancer will strike. That means feeling for lumps and bumps daily, always mindful of new aches and pains, always walking that fine line between vigilance and paranoia, waiting for the other shoe to drop.
The NIH budget cuts feel a bit like a shoe dropping. Reactions to the cuts within the community have ranged from bewilderment to anger to dread. Big Pharma interest in the rare disease space has historically been lukewarm, and federal dollars have been crucial in the advancement of research and developing treatments.
I, and so many like me, would not be here today were it not for NIH-funded research that led to our condition being diagnosed, and the development of detection strategies that enable doctors to find and treat our cancers before they have a chance to spread any further. Continued funding of this vital work will help ensure that other families won’t have to suffer the pain and loss mine already has.
Jim Higgins, a self-employed real estate appraiser, and his wife, Kathy, volunteer for LFS-related causes and charities to honor the memory of their daughters.
