This essay is part of a series exploring what is required for scientific progress to be made in our understanding of women’s health and our ability to treat the conditions that impact the lives of women everywhere. Learn more about why this is necessary and explore the other challenges and topics.
Why Scientists Struggle to Get Funding for Women’s Health
In 2020, only 10.7% of the basic scientific research funding provided by the United States government went towards women’s health research. Why?
Funding is required for any scientific research to move forward. It costs money to do research and most research will not generate any revenue for the scientist, the institute where they work, or the funders. This is especially true of basic research, which is required for greater understanding but does not result in treatments that can be sold to the public. There is also significant risk and failure in funding scientific research.
How is research funded?
Today, scientific research is funded by the government, private industry, nonprofit organizations, and private research institutes. Most basic research is funded by the National Institutes of Health (NIH). Translational research is funded by both the government and private industry, while clinical research is generally funded by private industry, both by pharma companies and by biotech venture investors.
In 2020, the NIH granted $41.6 billion to researchers to conduct basic research. This money is awarded to principal investigators (PIs) who write and submit grants outlining the scope of the work they plan to do and making the case for why it’s important. These grants are then reviewed by boards of scientists who score them and select which proposals to fund based on the merits of the research and the researchers conducting the work. The vast majority of funding is granted to researchers at universities; however, it is also given to private research institutes such as the Mayo Clinic and Sloan-Kettering Institute.
On average, 30% of the funding granted to PIs is given to the institute where they work as indirect costs. These are expenses that cannot be directly attributed to a project such as facilities, equipment, and materials that researchers need to conduct their research. The rest of the funding is used for the PI’s salary, the hiring of post-doctoral students and general scientists, the costs of conducting research, attending conferences, and materials such as laptops. They can also use the funding to procure data, samples, and models needed to conduct their research. NIH funding is strictly monitored and PIs must indicate their spending plans as part of their initial proposals, as well as report back on how the money was spent.
In 2020, the average size of an NIH grant was $624,931 and covered 6.25 years of work. The median grant was $376,250 and covered 3 years of work.³
When a researcher at an academic institution has identified something promising, they file for a patent with the federal government. The intellectual property (IP) they generate is owned by the institute where they work. If they received funding from the NIH, the government is granted an indefinite license to use the IP.
If research looks like it could lead to a novel therapeutic, the university will work with the researchers to license the IP to an existing company or raise funding to spin out a new company outside of the university. At this point, the translational work needs to point to something promising enough for investors to invest hundreds of millions of dollars into. The government is rarely the source of this funding and instead, this funding will generally come from biotech venture capitalists or the pharma industry. This phase of development almost always happens outside of academia.
Biotech investors that I have interviewed are generally open to investing in therapeutics and companies focused on women’s health conditions. However, reviewing the investments of the leading biotech venture firms showed that there are not many investments being made in the space. As I dug into why, multiple investors commented that there are not enough companies in the space, that those they do see are not solving a big enough problem to be interesting, or face challenges when bringing their therapeutic to market.
Why aren’t there more companies working on women’s health conditions? Based on everything I have learned so far, I believe it’s due to a lack of basic research into women’s health conditions.
Women’s Health and the NIH
In 1990, the NIH created the Office for Research on Women’s Health (ORWH) “in response to concerns about the lack of the inclusion of appropriate numbers of women in clinical research.” This office was the first office dedicated to women’s health and is mandated to promote “women’s health research within and beyond the NIH scientific community.”⁴ It works between NIH institutes to help guide their efforts towards more focus on women’s health. It does not allocate research dollars directly to researchers outside of career training grants.
The ORWH was a part of passing the NIH revitalization act in 1993 which required the inclusion of women and minorities in clinical research. They then also worked together with the NIH to pass the Policy on Sex as a Biological Variable (SABV) which required NIH grants to factor in sex in basic and translational research funded by the NIH.
These policies are both important in driving the inclusion of female models in early research and women in clinical trials. However, they do not themselves increase research being done into women’s health conditions. To improve that, the ORWH seems to have taken the view that we need more female researchers.
In 2000, the ORWH created BIRCH a “mentored career-development program designed to connect junior faculty….to senior faculty with a shared interest in women’s health and sex differences research.” Since 2000, “88 grants to 44 institutions supporting more than 700 junior faculty have been awarded.”⁵ This amounts to 31 grants per year.
More early career researchers studying women’s health is excellent, however once a researcher has decided they want to study women’s health, they then have to figure out how to get the funding to do so.
General Funding Challenges
There are many systematic challenges with how scientific research is funded today that extend beyond women’s health. In 2016, Vox surveyed 270 scientists to understand the biggest problems facing scientists. The result was a detailed explanation of the 7 biggest challenges facing science that covered everything from how stressful it is to be a young scientist to the perverse incentives that drive much of academic research. The number 1 challenge they wrote about was funding.
I will not try to rewrite their wonderful reporting. However, a few things are worth noting here. Academic scientists are driven by the need to publish papers to justify their work. The “publish or perish” mindset is deeply ingrained in the culture and the system encourages scientists to publish a significant quantity of papers over a limited number of high-quality papers.
Publishing drives their ability to get promotions, gain tenure and it also directly influences their ability to fund their research as researchers with more papers published are more likely to win grants in the future.⁶ As a result, researchers are driven to conduct “safe” science that will generate publishable results more quickly than risky science that might not turn up anything worth writing about.
Research grants are also short-lived, with many funding 3 or so years of work, even though it is well known that some of the biggest discoveries take decades of work. This means researchers have to continue to apply for more grants. Some estimate that PIs spend 30–50% of their time writing grants instead of conducting research.⁷
In addition, the amount of funding that the NIH has to grant to researchers has not increased with inflation and the number of PhDs graduating each year has grown. The result is that more people are applying for fewer grant dollars and the percentage of grant applications that are approved has declined from 30% to 20% in the last 10 years.
Lastly, more funding is going to older researchers. “The average age of first-time NIH grantees is 42 (and rising), and scientists younger than 35 receive less than 5 percent of federal funding.”⁸ New researchers struggle to get funding and while there is funding earmarked for early career researchers, it is more competitive due to the rising number of graduating PhDs each year.
Finding Support
If all that isn’t enough, researchers interested in studying women’s health conditions have additional challenges. One of the most basic is finding support within the NIH for the condition they want to study. There are 27 institutes within the NIH, each with its own funding and mandate. They are structured around specific conditions (National Cancer Institute, National Institute of Diabetes and Digestive and Kidney Disease, etc), areas of the body (National Eye Institute, National Heart, Lung and Blood Institute, etc), or areas of biological study (National Institute on Aging, Nation Human Genome Research Institute, etc). There is no institute focused on the uterus, ovaries, or any reproductive organs. Researchers interested in studying women’s health have to find an institute willing to fund their work. As a result, women’s health conditions are generally allocated small dollars from a budget focused on something else.
Most gynecological conditions fall under the National Institute of Child Health and Human Development (NICHD), which has a mandate to “understand human development, improve reproductive health, enhance the lives of children and adolescents, and optimize abilities for all.”¹⁰ This broad mandate resulted in women’s health conditions, including pregnancy and fertility, receiving only 9% of the NICHD’s $1.5 billion budget in 2020.
In 2020, the NIH granted $14 million to endometriosis research. Eighty percent of this funding came from the NICHD, but researchers were able to get grants from 7 other institutes as well.
In the same year, uterine fibroids received about $15 million in funding, but only 48% came from the NICHD. An additional 34% of the funding came from the National Institutes of Environmental Health Sciences whose mandate is to expand and accelerate “its contributions to scientific knowledge of human health and the environment, and to the health and well-being of people everywhere.”
Aversion to Risky Research
The National Bureau of Economic Research released a paper in June 2021 that reviewed the successful creation of the Covid-19 vaccines and reflected on the challenges the researchers faced in conducting their early research. They concluded that “funding is biased against risky research.” They go on to evaluate the grant selection process and come to the conclusion that the grant evaluation system is not equipped to evaluate risky proposals which leads to risk-averse selection. As a result, PIs who rely on the funding to continue conducting research, are not submitting risky proposals and instead are focused on conducting safe research that is more likely to get funded.
An aversion to risky research affects all research, however, due to the historical lack of research into women’s health conditions, many of the foundational elements needed to make progress do not exist. Building the foundation is inherently riskier and also further from being translated into treatments or cures, and as such grants for foundational research are more likely to be rejected.
Lacking the Foundation
Researchers need the basic building blocks of science to be able to make progress. Researchers I talked to all agreed that women’s health was understudied. When I asked why I would often hear about a lack of data or models being discouraging to researchers. Sufficient data, samples, and models allow researchers to ask questions and find answers. When these do not exist, researchers must first gather the data and samples and build the models. This work is generally considered “too basic” or “too risky” to get funding from the NIH.
This creates a catch-22 for researchers interested in studying women’s health. To get the funding for the work, they need enough preliminary data to show that the work is promising. However, without the funding, they cannot get this data.
For other conditions with a longer history of research, data is often generated as the byproduct of other research previously done. This data then leads to further questions and funding opportunities. When a condition, affecting women or otherwise, lacks significant historical research, finding the early data to start these funding cycles is difficult.
In 2020, the amount the NIH invested in researching women’s health conditions by the number of affected patients shows that unless you are studying women’s cancers, the funding per patient is very low when compared to other conditions.
The funding of academic research is difficult. Scientists must continually justify their work and existence and doing so forces them to focus on short-term publishable results and grant writing. Additionally, bias against risky research and a lack of a scientific foundation makes garnering funding more difficult for researchers interested in studying women’s health conditions.
Next in the series:
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Footnotes:
- https://www.researchamerica.org/sites/default/files/Publications/Research%21America-Investment%20Report.Final.January%202022.pdf
- https://reporter.nih.gov/search/L84z3iP0Bk6OM3h6vOiuXw/projects/charts
- https://reporter.nih.gov/search/vvPFMRpzUUORJCb4b_VKIg/projects
- https://orwh.od.nih.gov/about/mission-history
- https://orwh.od.nih.gov/career-development-education/building-interdisciplinary-research-careers-in-womens-health-bircwh
- https://www.nber.org/books-and-chapters/entrepreneurship-and-innovation-policy-and-economy-volume-1/funding-risky-research
- https://web.archive.org/web/20140113220343/http://www.scientificamerican.com/article.cfm?id=dr-no-money
- https://www.theatlantic.com/ideas/archive/2022/01/scientific-funding-is-broken-can-silicon-valley-fix-it/621295/
- https://nexus.od.nih.gov/all/2012/02/13/age-distribution-of-nih-principal-investigators-and-medical-school-faculty/
- https://www.nih.gov/institutes-nih/list-nih-institutes-centers-offices
- https://reporter.nih.gov/search/RpGVOYcPwkeJfJJ7Rm3Rmg/projects/charts
- https://reporter.nih.gov/search/qj5andEWeUexr9MmtyWM5g/projects/charts
