Women's Health

Why is HIV care not reaching those who need it most?

Hydeia Broadbent has never known life without HIV.

Born HIV-positive in 1984, Broadbent’s virus progressed to Acquired Immune Deficiency Syndrome (AIDS), meaning her T cell count (white blood cells that help protect your body) became dangerously low. Back then, a diagnosis of HIV/AIDS often amounted to a death sentence, but Broadbent was determined to live her short life to the fullest.

She became the face of childhood HIV/AIDS, appearing on nearly every major broadcast and cable television network in the 1990s, including “The Oprah Winfrey Show.” She spoke about the social stigma faced by people living with HIV and AIDS and reminded viewers that people living with HIV were also “normal people”.

In June 2022, Broadbent celebrated its 38th anniversary. She had joined National Institutes of Health clinical trials in the late 1980s and 1990s, which extended her life long enough for her to benefit from the current class of antiretroviral drugs. These new drugs help support the immune system and reduce the number of copies the HIV virus can make of itself in the body. For most people, that will mean an undetectable viral load, as it did for Broadbent.

Over the years, she managed to manage her HIV, but Broadbent struggled to pay for her health expenses, including her HIV treatment.

“There were times when I didn’t have insurance and was on my meds,” Broadbent said. “I even had a doctor come and say, ‘You’re going to die if you don’t start taking your medicine.’ … This doctor didn’t take the time to find out about my insurance or if I was even covered.

Why women of color are often overlooked in HIV care

In 2019, blacks and African Americans made up 13% of the US population, but accounted for nearly half (42%) of new HIV diagnoses. Hispanic/Latino people made up 18% of the US population, but accounted for 3 in 10 (30%) of new HIV diagnoses. Women of color, and black women in particular, face significant differences in HIV diagnoses compared to white women. This could explain why the rate of new HIV infections among black women is 11 times that of white women and four times that of Latina women.

As with many other health conditions, systemic inequities can make it harder for some women to get treatment. These inequalities could be a lack of health insurance or underinsurance, as Broadbent experienced. They can also be the result of not having access to health facilities that know about HIV testing due to a lack of transportation or living in an area with few providers.

These barriers mean that many women of color are not offered drugs called pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP) that help prevent the spread of HIV. And, if they test positive but don’t know it because they haven’t been tested, they could miss an important window to start antiretroviral therapy. Antiretroviral drugs can lower their viral load and prevent disease progression.

“A lot of providers are unfortunately not comfortable doing a thorough sexual health history,” said Erin Everett, NP-C, AAHIVS, a board-certified nurse practitioner in Atlanta who specializes in HIV care. “Even if people are connected to care, their providers might not be asking the right questions to reduce their risk. There are still providers who don’t do sexual health screenings in general, so you’re missing a whole population there.

Everett said she asks patients whether they or their partners have sex outside of their relationship and whether they have anal, vaginal or oral sex, among other questions. She said a provider should explain that such questions are not meant to be judgmental, but can help a provider provide appropriate testing and treatment to keep patients safe and reduce the risk of sexually transmitted infections and unwanted pregnancies.

Women may face additional stigma when seeking HIV testing and care for a variety of societal reasons, Everett said. One factor that is not often thought of is domestic violence, which can limit women’s ability to have safer sex and undergo routine health checks.

“Religious barriers and religious shame are barriers too,” she said. “For a lot of people in the Bible Belt, it’s shameful to have multiple partners or engage in some of the sexual practices that they engage in. They’ve been told that all their lives, so they’re going to be less upfront with their suppliers. .

And the stigma can go both ways, as providers in some areas might be less open to receiving HIV treatment and prevention education.

“We often got comments from providers like, ‘If I prescribe this, it’ll just let them go out and have sex,'” Everett said. “Well, people are going to do it anyway, but with the right education they can do it in a safer way.”

The importance of early treatment

Access to health care can literally be a matter of life and death for people living with HIV or at risk of contracting it. Antiretroviral treatments were a breakthrough that turned HIV into a chronic disease, but people living with HIV need to use them the right way to keep their viral load low. An increasing viral load will increase the health risks of HIV and make disease progression to AIDS more likely.

Broadbent was able to start taking her medication again, but noted the irony that she had to become unemployed to do so. The insurance she had when she worked didn’t fully cover the costs of her treatment, but her jobless status made her eligible for Medicaid, which paid for everything.

Today, she continues her activism by offering encouragement to others living with HIV/AIDS and prevention tools for those at risk of contracting the virus. Ideally, she would like to find work in a non-profit organization to continue her advocacy and provide insurance to cover her medical needs. She wants more black women, especially younger ones, to talk about safer sex and the importance of HIV prevention.

“We need to get people talking about HIV again,” Broadbent said. “It’s something a lot of people don’t focus on unless it’s a friend or family member who is infected, or themselves. Ask your sex partners to get tested because often we start new relationships and use condoms, then we feel comfortable and then the condoms disappear, but we have never checked that person’s HIV status HIV infection can happen to anyone .

This resource was created with support from BD, Janssen & Merck.

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