Hookworm is a parasite that primarily affects people in tropical and developing regions. Diffuse Intrinsic Pontine Glioma (DIPG) is a rare brain tumor with a sparse prevalence of about 350 cases in the U.S. These diseases succumb to scant research funding, squandering progress toward a prevention method or cure. Simply put, pharmaceutical companies just can’t take on the financial risk of funding research for these diseases. That’s where the National Institutes of Health (NIH) comes in to fill the gap.
Though the NIH conducts some medical research in its own laboratories, 83% of its budget is used for extramural grants given to academic researchers at universities and medical institutions across the country. It’s through this extramural program that researchers like Peter Hotez and John Prensner are able to pursue critical research for these niche diseases.
Peter Hotez is a physician-scientist and Dean of the National School of Tropical Medicine at the Baylor College of Medicine. His early career can best be described as obscure — a consequence of his specialization in the prevention and treatment of Neglected Tropical Diseases (NTDs). NTD is an umbrella term for infectious diseases that most heavily impact poor countries with diminished visibility in the world health agenda.
Case in point, Hotez made progress toward vaccines for the first identified strains of coronavirus known as SARS and MERS years before the emergence of COVID-19, both of which were bundled with the rest of his studied diseases as a load of nonissues. The public health community at large shunned him as the boy who cried wolf when he raised concerns over coronavirus’ pandemic potential back in 2014. Neither the NIH nor the pharmaceutical industry heeded his warning. The sequence of coronavirus outbreaks beginning with SARS in 2002 and MERS in 2012 established a pattern writ large that should have made the emergence of a third in 2019 less of a shock than it was. Perhaps if research funders noticed the signs and gave more priority to underfunded projects, we would have been better-equipped to fend off what would go down as the deadliest disease in American history.
John Prensner can relate to many of Hotez’s lived experiences in academic disease research. A physician-scientist like Hotez, Prensner is involved in biological chemistry and pediatric cancer research at the University of Michigan, while also providing care for patients at C.S. Mott Children’s Hospital in Ann Arbor. A type of brain tumor called DIPG is one of many types of pediatric cancers he studies and treats. Unfortunately for Prensner, the insufficiency of federal funds for rare pediatric cancers has made his work more difficult, leading to creative side hustles like initiating partnerships with nonprofit organizations dedicated to accumulating funds for researchers like himself. The work that nonprofits do for cancer research is undoubtedly invaluable. But should we really be so dependent on philanthropy instead of the fundamental systems we have in place to fund this type of research?
President Trump had alluded to the urgency of pediatric cancer research in a speech to Congress earlier this year, stating that “since 1975, rates of child cancer have increased by more than 40 percent.” While this acknowledgment to a national audience is appreciated, his administration’s actions have not aligned with his purported concern. The administration has proposed an $18 billion NIH budget cut to Congress in its discretionary budget request for 2026, describing the agency as “too big and unfocused.” One cited reason for the drastic funding reduction stems from the NIH’s associations with a Wuhan lab claimed to have accidentally leaked the SARS-CoV-2 virus from its facilities, a hypothesis that has long been debunked by the scientific community.
This severance of funds, which are the lifeline of cancer researchers like Prensner, just doesn’t make sense in light of Trump’s promise to tackle the increased prevalence of pediatric cancers. Prensner uses funds from NIH grants for new and ongoing clinical trials testing innovative therapeutics for his young patients. The proposed funding cut “means fewer new treatments, slower time to realizing some of the benefits of medical research, and probably, ultimately, an inability to advance innovative health care in the way that we have in the past,” Prensner said in an interview I conducted with him in April. Though Prensner hasn’t reported experiencing disruptions to ongoing clinical trials in his own lab thus far, cancer treatment plans have already been suspended for a number of patients across the country.
The disparity in research funding between pediatric and adult patients is hardly a new phenomenon. In 2012, funds for pediatric cancer research constituted a mere 4% of the National Cancer Institute’s total budget, according to its annual report. It was only recently that pediatric disease research has enjoyed substantial NIH budgetary increases after decades of neglect. Despite the dismal funding scene, children with cancer rely on public funds for the advancement of new treatments. From 2015 to 2020, NIH-sponsored clinical trials testing novel treatments for terminal pediatric diseases, including cancer, proportionally outweighed those facilitated by industry, presumably due to the absence of profit incentives.
Children aren’t exclusive to this funding dilemma. Other traditionally marginalized groups, comprising women and people of color bear the brunt of sparse research funding. For instance, sickle cell disease, which mostly afflicts Black and Hispanic populations, received 3.5 times less funding per affected individual from the NIH in 2010 than cystic fibrosis, a similar genetic disorder that is more commonly inherited among white populations but three times less prevalent. Further, an analysis of NIH funding trends found that the least funded diseases in 2019 were largely female-dominant afflictions, regardless of the burden of disease, measured in number of years of life lost due to disease.
Senator Joseph E. Ransdell, regarded as one of the founding fathers of the modern NIH, believed in its potential to do extraordinary things at its inception in 1930, affirming in the subsequent year that the agency would play a key role in “preventing and curing disease with its awful train of suffering and colossal economic losses to the world.” Yet, recent events already bear witness to the consequences of a deficient NIH. It has failed to adequately prepare us for the COVID-19 pandemic. It fails to fund research for diseases that are disparately prevalent among disempowered groups. And, if we were to extrapolate, the NIH is bound to fail again in the coming years.