Home Truths
A New Testing Initiative Helps Black Women to Know Their Status & Stay on Top of Their Sexual Health
by Chael Needle

A new partnership seeks to improve HIV testing, counseling and care for Black women. Molecular Testing Labs is providing free HIV self-testing kits to Black Women’s Health Imperative (BWHI), a nonprofit created by Black women and dedicated to ensuring the health and wellness of Black women and girls in a holistic way. The kits are part of the array of resources found within On Our Own Terms (OOOT), a BWHI initiative that provides to Black women the information and tools that they need to make decisions about their sexual health and wellness, including the importance of knowing one’s HIV status.

By encouraging Black women to test in the privacy of their own home, the HIV awareness initiative hopes to make testing a routine part of healthcare, normalize conversations about HIV with sexual partners to minimize risk, and decrease the stigma around HIV testing. The initiative also hopes to help decimate a disparity—Black women, when compared to other women of other ethic/racial categories, are disproportionately affected by HIV/AIDS and affected to the greatest extent. According to the CDC, “Although annual HIV infections remained stable among Black women from 2014 to 2018, the rate of new HIV infections among Black women is 13 times that of white women and four times that of Latina women.” In a prepared statement, BWHI point to several challenges to explain this disproportionality: “financial hardship, an absence of quality health care and a distrust of providers, higher rates of some sexually transmitted infections, smaller sexual networks, and stigma.”

BWHI’s On Our Own Terms also provides women with access to “an informed network of organizations and experts focused on the prevention of HIV for, by and about Black cisgender and transgender women, as well as the care and treatment of women living with HIV,” according to a prepared statement.

Connection is key. One of the benefits of testing in a clinic or mobile site is that often individuals can be easily connected to care. A&U asked Brad Thorson, Director, Business Development, Molecular Testing Labs, if at-home testing helped fulfill this need to engage individuals in care. Thorson responded, “Molecular’s home testing still requires an overseeing provider who can follow up on positive tests. So no patient will learn about being HIV-positive without having some interaction with a licensed clinician. Self-collected test samples have other big benefits to patients—patients have more privacy because they give the samples at home, so there’s no risk of being seen by someone you know in a clinic; no need to make up excuses for absences; no need to take off work or make travel arrangements. The patients who use self-collected testing at home actually reported higher engagement rates than regular patients.”

A&U recently had an opportunity to correspond with Nakesha Powell, On Our Own Terms Project Director, Black Women’s Health Imperative, about at-home testing and the organization’s aim to support Black women.

Chael Needle: In what way are BWHI/OOOT and resources like the free HIV testing kits a response to the medical mistrust and assumptions about Black individuals that the healthcare system helps to perpetuate? Is this a goal of OOOT—to be a trusted ally?
Nakesha Powell: For more than thirty-eight years, the Black Womens’ Health Initiative (BWHI) has worked to advance health equity and social justice for Black women through policy, advocacy, education, research, and leadership development. Our resources for HIV prevention and education include making free self-test kits available. That is in direct response to Black women often being left out of the conversation. There is evidence that shows Black women tend to be demeaned and criticized when seeking HIV care, testing, and resources. Many Black women are labeled “sexually irresponsible” for asking for an HIV test. Black women have higher rates of HIV infections and we believe these factors are part of the reason why. We have to change how testing is viewed and be part of the solution.

As someone who works in HIV messaging, so to speak, I love the various ways BWHI/OOOT reaches out to its clients and the efforts made to include everyone, cisgender and transgender. Why is inclusion part of the solution to engaging in care?
It is important for every woman to see herself in our messaging, imagery, and delivery channel. This way, she knows we’re talking with her—not at her—and that BWHI is fighting every day to ensure she has access to care, and is included in research and therapeutic development.

Access to healthcare is a fundamental right, and we want Black women to know there are policies in place to protect our health. Barriers as they relate to care based on gender identity only seek to cause greater harm to those who have the greatest disparities.

What would your organization like to see happen in the next five years in relation to Black women’s health? What are the short-term health goals?
We think it’s vitally important for Black women to be included in HIV therapeutic trials so we can be sure HIV prevention and treatment methods take our experiences into consideration. We also need to see many more researchers of color, particularly Black researchers, who consider the unique circumstances of Black women’s health related to HIV/AIDS. In the short term, we’d like to see more Black women understand their risk for HIV and take action by considering PrEP, practicing safer sex, and getting easy access to testing so they can know their HIV status through routine testing. We think self-collected at-home testing is key to all of this.

Is there anything we haven’t covered that you would like to cover?
Through programs like OOOT from BWHI and GetCheckedDC.org from the D.C. DOH, we regularly hear about patients participating who would have otherwise not gotten tested.
Equally as important is the population data that health departments have to identify geographic outbreaks and allocate services/interventions more effectively. By rejecting the paternalism of traditional diagnostics and meeting patients where they are, we can empower patients to advocate for their own health and build stronger and healthier communities.

For more information about Black Women’s Health Imperative, log on to: www.bwhi.org. For information about On Our Own Terms’ testing kit resources, visit: https://ooot.bwhi.org. To learn about Molecular Testing Labs, log on to: moleculartestinglabs.com.

Chael Needle is Managing Editor of A&U. He writes fiction and poetry when not editing. Follow him on Twitter @ChaelNeedle.