OP-ED: How Exclusion Of Black Women Living With HIV From Medication Trials Negatively Impacts Health

NOVEMBER 22, 2021 - The exclusion of Black women, femmes, and girls from HIV prevention trials is part of a culture of anti-Blackness and misogyny that forces the women I work with every day to face deadly -- and preventable -- health outcomes.

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WATCH: African Americans and HIV by the Numbers

Roughly 38 million people are living with HIV/AIDS worldwide. Of that number, more than half are women. More than 260,000 women, femmes, and girls live with HIV/AIDs in the United States, and a majority are Black or Latinx. Ahead of National Black HIV/AIDS Awareness Day, we must center the needs of those most impacted. So when companies developing HIV prevention medications choose to exclude women from their trials, it negatively affects women’s health outcomes and does particular harm to Black women who are at heightened risk of contracting HIV.

Black women are vulnerable for a myriad of reasons: poverty, lack of access to health care, lack of knowledge about sexually transmitted diseases, and stigma, to name a few. HIV/AIDS related illness is one of the leading causes of death for Black women aged 25-34 and Black women accounted for six out of ten of the new HIV infections among women in 2016.

READ: 3 Ways to Support Black Women Living With HIV

As a Black woman working in reproductive justice and a lawyer, my job operates at the intersection of HIV policy and the law. I communicate with legislators and try to influence legislation by writing policy briefs to ensure that Black women living with HIV/AIDS are able to be the final arbiters in their lives-- that they are able to live lives free from stigma and shame. But my work can only go so far. The current state of drug medication trials hurts Black women, femmes, and girls.

One example of this erasure can be found in the roll-out of the HIV prevention drug, PreP. Descovy, a PreP medication, was tested almost exclusively on cisgender men. The company argued that it would require “too many resources” to enroll cisgender women in the trials. The FDA then proceeded to approve the use of Descovy to reduce the risk of contracting HIV through sex, excluding cisgender women, trans men, gender non-conforming and non-binary and agender people, and indeed anyone who may contract HIV while engaging in vaginal sex.

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While this medication’s approval for cisgender men and transgender women is a feat in the race to defeat HIV/AIDs and end the epidemic, it is disappointing that the studies conducted completely excluded cisgender women, particularly in light of the fact that Black women already face discrimination at the doctor’s office -- our pain is not taken seriously, our mortality rates during pregnancy are disproportionately high, and we are more likely than any other race to die of cervical cancer. Black women are among those most at risk of contracting HIV/AIDs, and yet we are under, and sometimes not at all, represented in the production, development, and marketing of the medication so many of us need.

Clinical trials largely ignore Black women living with HIV. This is unacceptable. The social safety nets and support for those diagnosed with HIV should be accessible to everyone, but that is not always the case.

That is where SisterLove comes in. I am proud to work for an organization that operates at the intersection of reproductive justice and HIV policy. In our work, we center those who are living with HIV. We destigmatize the illness by talking publicly and openly about the experiences of those living with HIV while engaging in prevention work. We provide free testing and counseling for those who are diagnosed with HIV. In order to prevent the spread, we host Healthy Love workshops where we find people where they are at and teach them about sex education and ways to prevent the spread, and we center youth living with HIV.

LGBTQ legislators in Georgia have pledged to pass legislation that would repeal and reform many of Georgia’s HIV criminalization laws that currently make it a crime for a person living with HIV to not disclose their status to their sexual partners. While this would make some necessary changes to existing HIV criminalization laws, there is still work to be done. While we wait for decriminalization bills to make their way through the legislature and be approved by Governor Kemp, SisterLove will continue to fight for people living with HIV/AIDS. While there is an end in sight for the HIV epidemic, that cannot be achieved if we do not bring Black women, femmes, and girls into the fold.

About the Author

Aimee Registe, J.D., was an If/When/How Reproductive Justice Fellow at Sisterlove, Inc. during 2020-2021. Currently, she is the Policy and Advocacy Program Manager at SisterLove Inc. She focuses on all things policy and advocacy concerning sexual health and reproductive justice. She graduated from the George Washington University Law School in 2019 with her Juris Doctorate and from Florida Agricultural and Mechanical University with her Bachelor’s of Science in Political Science and a minor in pre-law.

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