[Photo: Litt,T. L, 1989. ACT UP protests healthcare discrimination at Kings County Hospital in June of 1989. In New York, N.Y. June 1989, ACT UP demonstration in front of Kings Country Hospital.]
[Photo: NPR.1990. Katrina Haslip and Terry McGovern protesting at Health and Human Services in Washington D.C., on the day of Katrina's release from prison in October 2nd, 1990.]
[Photo: Portrait of Ruth L. Kirschstein, Deputy Director of NIH in 1993, and previous Acting Associate Director of the NIH for research on women’s health. She was the acting Director from 2000 to 2002.]
[Photo: Litt,T. L, 1989. ACT UP protests healthcare discrimination at Kings County Hospital in June of 1989. In New York, N.Y. June 1989, ACT UP demonstration in front of Kings Country Hospital.]
DETRIMENTAL EFFECTS OF OVERPROTECTION
The absence of women from research and drug trials is a new phenomena. It developed due to incidents of drugs affecting unborn infants, causing the Institutional Review Board to produced an act in 1977. The act recommended that women of child baring potential be excluded from Phase I and early Phase II drug trials.
The scientific community first discovered Acquired Immune Deficiency Syndrome (AIDS) in 1981, and the first women were infected the same year. In the following year, activists worked to promote access to experimental AIDS therapies and other potentially lifesaving medicine they were restricted from.
After years of protesting for their right to participate in trials, the NIH, in 1993, revised the Memorandum on Inclusion after there was proven gender inequity in research for HIV and AIDS.
But the damage has already been done. The delay in research resulted in the women’s symptoms of AIDS not being in the list the Center of Disease Control (CDC) provided, denying women access to benefit and treatment programs. Women were not represented at AIDS Clinical Unit trials compared to their reported incidents of AIDS.
The same occurred in HIV trials for women. In both cases the trials for AIDS/HIV research overly recruited white males, underrepresenting women, older people and non-white ethnicities.
Today, there is still a wide gap between male and female representation in research. But gender disparities are more influenced by attitudes towards health, sexual intimacy, and relationships with healthcare providers than legislation.
Sources:
Litt, T. L. (1989). Act Up protests healthcare discrimination at Kings County Hospital in June of 1989. t. l. litt photography. t.l. litt. Retrieved April 2, 2023, from https://www.tllittphotography.com/gallery-image/Civil-Disobedients/G0000glBJ3jurhgw/I00007hsH9kW7ogg.
Mastroianni, Anna C, ect al. Medicine Women and Health Research ethical and legal issues including woman in clinical trials, Vol. I. National Academy Press, 1994. https://pubmed.ncbi.nlm.nih.gov/25144026/
Namiba, A., Kwardem, L., Dhairyawan, R., Hale, F., McGregor Read, J., Anderson, J., & Welbourn, A. (2022). From presumptive exclusion towards fair inclusion: perspectives on the involvement of women living with HIV in clinical trials, including stakeholders' views. Therapeutic advances in infectious disease, 9, 20499361221075454. https://doi.org/10.1177/20499361221075454
Nwokolo, N., Ruiter, A. (2022). The underrepresentation of women in studies. The underrepresentation of women in studies| ViiV Healthcare. Retrieved from https://viivhealthcare.com/ending-hiv/stories/science-and-innovation/understanding-hiv-in-women-with-gender-gap-research/
Sanders, S., West, J., Gutierrez, A., Douglis, S., McBrain, L., Restrepo, M. L., Hochman, J. (2021). ACT UP: A History of AIDS/HIV Activism. npr. https://www.npr.org/2021/06/16/1007361916/act-up-a-history-of-aids-hiv-activism