Harms of terminating NIH grants for kidney disease

Abstract

In early 2025, nearly 2,100 research projects funded by the US National Institutes of Health (NIH) were terminated. Numerous calls for depoliticization of the NIH’s scientific mission culminated in the Bethesda declaration, which has now been signed by over 32,000 individuals. However, little attention has been given to the effect of these terminations on people who stand to benefit most from scientific discoveries: the patients, care partners and community leaders.

We write this Comment as members of the stakeholder advisory board and study team for an NIH-funded study, “Structural racism as a 3rd hit among Black individuals with APOL1 risk alleles.” As an advisory board, we were engaged to help characterize and measure the effects of community and environmental factors — emblematic of structural racism — on people with APOL1 risk variants. The findings from this work were intended to inform patient-centred clinical interventions to mitigate the effects of these exposures on adverse kidney health outcomes. Despite a successful progress report submission in December 2024 and receipt of a government contract for continuation of this study on 19 February 2025, by 4 March 2025 our team received a notice of a freeze on all funds, and on 20 March 2025, the grant was terminated. That evening, several members of our board gathered to discuss the implications and impact of this and read aloud the termination note. “This award is related to DEI [diversity, equity, and inclusion]: research programs based primarily on artificial non-scientific categories including amorphous equity objectives, are antithetical to scientific inquiry, do nothing to expand our knowledge of living systems, provide low returns on investment and do not enhance or lengthen life or reduce illness.” The majority of the patients on our board interpreted this message to mean: ‘Your life does not matter to us’.

As we reflect on the past few months, we are immensely grateful for the tireless advocacy of those who have defended the rigor of the scientific awards process in the American Public Health Association (APHA) v. NIH lawsuit, which has resulted, for now, in the restoration of some grant funding for our study and others. However, our fears remain that this funding will be subject to further loss and subjective, politicized scrutiny. Moreover, the work of innumerable scientists, patients and advocates who sought to improve the nation’s health should never have been disrupted or jeopardized. Some key issues in the original NIH termination letters require attention and serve as a cautionary tale.

First, the decision to terminate our study and similar studies is fundamentally antithetical to what the NIH study seeks to achieve. As noted in the Bethesda Declaration¹, according to US law (42 U.S.C. § 282), the “NIH shall utilize diverse study populations, with special consideration to biological, social, and other determinants of health that contribute to health disparities.” Our study seeks to do just that. Numerous studies have highlighted that structural racism (resulting, for example, from policies and practices such as redlining and implicitly or explicitly enforced restrictions on resources and opportunities) has a multi-generational adverse effect on health. Structural racism has been associated with an increased neighbourhood-level prevalence of chronic diseases, including diabetes, hypertension, and chronic kidney disease², and with incident kidney failure³.

Second, there is nothing unscientific about studying the effects of community and environmental factors on the risk of genetic disease progression. Like other gene variants, the unique geographic distribution of APOL1 risk variants relates to its geo-evolutionary protective mechanisms⁴. An abundance of studies have shown that genetic risk variants can interact with environmental risk to increase disease risk for a range of conditions, including asthma, multiple sclerosis and systemic lupus erythematosus⁵. The benefits of studying gene–environment interactions are expansive and include the identification of relevant biologic pathways that contribute to disease acceleration, the identification and mitigation of key exposures to exacerbate disease, and the design of preventive and therapeutic strategies⁵.

The suggestion that studies such as ours “do nothing to expand of our knowledge of living systems or provide low returns on investment and do not … reduce illness” is fraught with harmful distortions and falsehoods. Environmental and contextual factors have been implicated in the onset, progression and outcomes of prevalent chronic diseases⁶. For example, a 2017 study that demonstrated significant county-level disparities in pulmonary disease-associated mortality (that is, greater chronic obstructive pulmonary disease and pneumoconiosis-related mortality in the Central Appalachian versus other US regions) clarified targets for intervention including tobacco and occupational exposures such as coal dust⁷. Similarly, the identification of clear links between silica exposure and lung cancer spurred interventions to curb the disproportionate burden of lung disease among coal workers and informed the development of critical regulatory protective standards⁸. As another example, a National Academies of Sciences, Engineering, and Medicine report that highlighted that the disproportionate burden of the opioid epidemic in rural America stemmed from structural factors — including poverty, poor working conditions and limited opportunity — led to recommendations, including expanded access to addiction services, and efforts to curb economic hardships in heavily affected regions⁹.

The defunding of science and social infrastructure will harm individuals and communities. Insights into the extent to which contextual factors such as structural racism affect APOL1-mediated kidney diseases could have policy implications, such as greater investment in upstream interventions to curb the burden of dialysis and kidney failure in individuals at high risk. The long-term savings arising from such strategies could be transformational not only in terms of the Medicare budget (of which dialysis currently accounts for 7% of spending) but also in terms of the ability of affected individuals to avoid kidney failure, thrive in their communities and continue to work.

Cuts to science, innovation and discovery and dismantling of the critical infrastructure that underpins public health also damage hard-earned public trust in science. As scientists, patients, care partners and advocates, we know that trust is sacred and foundational to public health¹⁰. Trust has been the foundation upon which key scientific discoveries including transplantation and new disease-slowing therapies such as the SGLT2 inhibitors were founded. Yet repeated historic and current-day policies and practices — including the current funding cuts to health-promoting policies such as Medicaid and food programmes and the rollbacks of educational opportunities — continue to erode trust. Whether trust can be restored will be contingent on present and future efforts towards repair, which will require careful attention to patient and care partner voices.

“Advocacy will be essential to protect the future of science”

What is our path forward?

Advocacy will be essential to protect the future of science. Shortly after the termination of our grant, for instance, members of our board met with staff from the Senate Health, Education, Labor and Pensions Committee and shared our view of the personal impact of the termination on our lives and those of millions of others who live with kidney disease. Just as we courageously shared our stories, clear, unfettered, truthful messaging from professional and advocacy organizations regarding the harm of eroded funding will be essential to propel our endeavours forward. For example, a joint statement from the leaders of flagship infectious disease journals affirmed their commitment to “remain vigilant and vocal in defending the principles of scientific integrity and global health equity” while remaining active in “challenging policies that suppress knowledge, politicize science, obstruct health, and impede democratized dissemination of rigorous evidence based science¹¹.” Others have called for broadening funding opportunities and expanding the breadth of individuals who advocate for science, recognizing the role of community-partnered advocacy throughout research life cycles as a means of ensuring inclusivity, relevance, equitable implementation and sustainability¹². Finally, countering restrictive policies and combatting falsehoods that undermine scientific rigor will require a concerted effort to explicitly connect the dots between emerging policies or actions and their short- and long-term outcomes. As a society, we must recognize and respect the delicate interdependency that connects public health, economic prosperity and national security to investments in rigorous science, democracy and the broad expanse of local and national policies around housing, education and a range of other health-influencing sectors. Through effective framing and discourse, the broader scientific and health advocacy community can showcase how scientific discoveries and community-engaged research has saved lives, enhanced population health, improved economic opportunities and improved national security. As the APHA’s president, Georges Benjamin, has inspired his organization to do, we too “must collectively speak truth to power and lead the way to building the capacity of the field to make optimal health a top national priority¹³.”