This piece was originally published on Bill of Health, the blog of Petrie-Flom Center at Harvard Law School.
The Biden administration plans to greatly increase funding for the National Institutes of Health (NIH) in 2022, presenting the agency with new opportunities to better align research funding with public health needs.
The NIH has long been criticized for disproportionately devoting its research dollars to the study of conditions that affect a small and advantaged portion of the global population. For instance, three times as many people have sickle cell disease — which disproportionately affects Black people — than cystic fibrosis — which disproportionately affects white people. Despite this, the NIH devotes comparable research funding to both diseases. These disparities are further compounded by differences in research funding from non-governmental organizations, with philanthropies spending seventy-five times more per patient on cystic fibrosis research than on sickle cell disease research.
Diseases that disproportionately affect men also receive more NIH funding than those that primarily affect women. This disparity can be seen in the lagging funding for research on gynecologic cancers. The NIH presently spends eighteen times as much on prostate cancer than ovarian cancer per person-years of life lost for every case, and although this difference is partly explained by the fact that prostate cancer is far more prevalent than ovarian cancer, this disparity persists even after prevalence is accounted for. Making matters even worse, funding for research on gynecological cancers has fallen, even as overall NIH funding has increased.
Disparities in what research is funded are further compounded by disparities in who gets funded. Black scientists are also about half as likely to receive NIH funding than white scientists, and this discrepancy holds constant across academic ranks (e.g., between Black and white scientists who are full professors). This disparity is partly driven by topic choice, with grant applications from Black scientists focusing more frequently on “health disparities and patient-focused interventions,” which are topics that are less likely to be funded. Recent calls to address structural racism in research funding have led the NIH to commit $90 million to combatting health disparities and researching the health effects of discrimination, although this would represent less than two percent of the Biden administration’s proposed NIH budget.
The disconnect between research funding and public health needs is also driven by the fact that the NIH tends to fund relatively little social science research. For instance, police violence is a pressing public health problem: in 2019, more American men were killed by police violence than by Hodgkin lymphoma or testicular cancer. But unlike Hodgkin lymphoma and testicular cancer, which receive tens of millions of dollars of research funding from the NIH every year and additional funding from non-governmental organizations and private companies, the NIH funds little research on police violence. For instance, in 2021, only six NIH funded projects mentioned “police violence,” “police shooting,” or “police force” in their title, abstract, or project terms, while 119 mentioned “Hodgkin lymphoma” and 24 mentioned “testicular cancer.”
While many view the NIH as an organization focused exclusively on basic science research, its mandate is much broader. Indeed, the NIH’s mission is “to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability.” Epidemiologists, health economists, and other social science researchers studying how societies promote or undermine health should thus receive NIH funding that is more proportionate to the magnitude of the health problems they research.
Research funding disparities have multiple causes and warrant different solutions, from prioritizing work conducted by scientists from underrepresented backgrounds, to ensuring that there is gender parity in the size of NIH grants awarded to first-time Principal Investigators. To address the broader problem of scientific priorities not reflecting the size of health problems, the NIH should instruct grant reviewers to consider how many people are affected by a health problem, how serious that health problem is for each person affected by it, and whether a disease primarily affects marginalized populations. In addition, the NIH should commit to funding more research on public health problems — like police violence — that cause substantial harm but receive relatively little attention from the health research enterprise.
As the NIH prepares for a massive influx of funding, it must follow through on its commitment to address health research funding disparities.