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Notes -
I am kindly asking this knowledgable community to check my data and my argument.
Fact 1
In the 2024 state of the union address Biden said:
Biden used this argument to call for more funding for women's health research:
https://www.whitehouse.gov/state-of-the-union-2024/
Fact 2
The NIH 2017, 2018 and 2019 research budget breakdown is:
Gender neutral research: 80% of funding.
Women's health research: 14% of funding.
Men's health research: 6% of funding.
Source: Report of the Advisory Committee on Research on Women’s Health: 2017–2019, table 8, page 117. https://orwh.od.nih.gov/sites/orwh/files/docs/ORWH_BiennialReport2019_20_508.pdf
In other words, Biden was not saying the truth because at least in 2017, 2018 and 2019 women's health research received more than double the funding compared to man's health research.
Note 2.1
83% of all medical research in the US is funded via NIH. The other 17% may be funded via private foundations and organizations, pharmaceutical companies and other for-profit entities, or via state and local governments.
Source: https://www.nih.gov/about-nih/what-we-do/budget
Note 2.2
Funding of the reproductive & maternal care is certainly justified and will be always reported as women's specific research funding - but only about 7%-10% of the women's health research was in the "Reproductive & Maternal/Child/Adolescent Health" category.
Source: Report of the Advisory Committee on Research on Women’s Health: 2017–2019, table 9, page 117. https://orwh.od.nih.gov/sites/orwh/files/docs/ORWH_BiennialReport2019_20_508.pdf
Note 2.3
NIH defines “Women’s health conditions,” as...
Source: Report of the Advisory Committee on Research on Women’s Health: 2021–2022 https://orwh.od.nih.gov/sites/orwh/files/docs/ORWH_Biennial%20Report_121823_1516_F_508c_Optimized.pdf
Note 2.4
After 2019, the NIH has decided to stop calculating data on men's health research funding. This means that it will no longer be possible to show that men's health research is grossly underfunded compared to women's health research. I wonder what the motivation was for this decision.
Source: Report of the Advisory Committee on Research on Women’s Health: 2021–2022 https://orwh.od.nih.gov/sites/orwh/files/docs/ORWH_Biennial%20Report_121823_1516_F_508c_Optimized.pdf
Fact 3
Globally men suffer 53.4% of all Burden of Disease.
Global Burden of Disease: https://ghdx.healthdata.org/gbd-2019
Note 3.1
In the US specifically:
https://www.congress.gov/bill/117th-congress/house-bill/5986/text?r=16
PS: I do not consider the argument "research on women’s health is underfunded because all health research is underfunded" a good faith argument.
Is the claim not, and I have no knowledge of whether the claim is true, that a lot of historic medical research upon which eg. current diagnoses and treatment plans are based was conducted primarily upon men?
Yes, this is the claim that I also encounter most often in medical science, i.e. that the majority of the so-called gender neutral research is actually biased towards men because the majority of consenting subjects is male. And this makes me furious. Yes, medical researchers generally prefer male subjects because having to consider the period, which unfortunately can have a major influence on many medications, is an absolute pain in the ass. But if there was a huge number of female subjects desperately wishing to be included in early phase trials, they'd take them; But women are by and large very risk averse, and in particular when it comes to untested substances that give them no expected benefit. This is well reflected in the data for different phases: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5867082/
Phase I is for testing the safety and distribution of medication. There is no benefit for the subject, and hence the percentage of women in these trials is small, only around 22% in this particular review (but this is pretty consistent).
Phase II and later is for testing whether a drug works for humans, and hence most subject actually have a specific disease that they hope the medication will help with. Hence, the percentage of women suddenly reflects the population very well, usually around 45+%.
So somehow if women refuse to sign up for medical research that doesn't benefit them personally so men take up the slack, who is the primary victim? Obviously, the poor women.
And, just to be clear here, kudos to the minority of women who do sign up for early research. I agree this is an issue, but critically it is an issue that can only be solved by women willingly signing up more. And it also is a somewhat minor issue, since a lack of efficacy or the presence of female-specific side effects will still be caught in the later phases when women are well represented.
How does one actually sign up for these types of trials? I've long admired the conscientious objectors who got injected with infectious disease to help medical research instead of fighting in the army, but I have no idea what I should do to do something similar. Something like donating a kidney is more obvious how to do, but also seems like there's a lot more hurdles since it seems to happen so much less.
Depends a lot on the country you're in, I'd honestly have to look it up myself for most of them. I'm not really directly involved with patients nor drug development, pretty much strictly lab experiments on one side and data analysis for existing data sets on the other.
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