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Why isn’t HIV care reaching those who need it most?

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Hydeia Broadbent has never known a life without HIV.

Born HIV-positive in 1984, the Broadbent virus evolved into Acquired Immunodeficiency Syndrome (AIDS), meaning her T-cell count (white blood cells that help protect your body) became dangerously low. At the time, an HIV/AIDS diagnosis was often a death sentence, but Broadbent was determined to live her short life to the fullest.

She became the face of HIV/AIDS in children, appearing on nearly all major broadcasters and cable television networks in the 1990s, including “The Oprah Winfrey Show.” She spoke about the social stigma that people with HIV and AIDS face, reminding viewers that people with HIV are “normal people” too.

In June 2022, Broadbent celebrated its 38th birthday. She had joined National Institutes of Health clinical trials in the late 1980s and 1990s, making her life long enough to benefit from the current class of antiretroviral drugs. These newer 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, this means an undetectable viral load, as it does for Broadbent.

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

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

Why women of color are often overlooked in HIV care

In 2019, black and African Americans represented 13% of the U.S. population but made up nearly half (42%) of new HIV diagnoses. Hispanic/Latin people represented 18% of the US population, but accounted for 3 out of 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 higher than for white women and four times higher than for Latina women.

As with many other health problems, systemic inequalities can make it harder for some women to get treatment. These inequalities can be a lack of health insurance or underinsurance, as Broadbent has experienced. They can also result from not having access to healthcare facilities that are up to date on HIV testing due to lack of transportation or living in an area with few providers.

These barriers mean that many women of color are not receiving drugs called pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP), which help prevent the spread of HIV. And if they’re positive, but don’t know because they aren’t being tested, they could be missing an important time to start antiretroviral medication. Antiretroviral drugs can reduce their viral load and prevent the progression of the disease.

“Many providers, unfortunately, feel uncomfortable doing a thorough sexual health history,” says Erin Everett, NPC, AAHIVS, a certified nurse practitioner in Atlanta who specializes in HIV care. “Even when people are connected to healthcare, their health care providers may not be asking the right questions to reduce their risks. There are still some providers who generally don’t do sexual health screenings, so you’re missing a whole population there.

Everett said she asks patients if they or their partners have sex outside of their relationship, and if they have anal, vaginal, or oral sex, among other things. She said a health care provider should explain that such questions are not judgmental, but can help a health care provider provide appropriate screenings and treatments 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 not often thought of is intimate partner violence, which can limit women’s ability to have safer sex and routine health screenings.

“Religious barriers and religious shame are also barriers,” she said. “For many people in the Bible Belt, it’s embarrassing to have multiple partners or to participate in some of the sexual practices they engage in. They’ve been told that all their lives, so they’ll be less likely to pre-date with their suppliers. .”

And the stigma can go both ways, as health care providers in certain areas are less open to educating about HIV treatment and prevention.

“We often got feedback from providers like, ‘If I prescribe that, they’ll just go out and have sex,’” Everett said. “Well, people are going to do that anyway, but with a good education, they can do it more safely.”

The importance of early treatment

Access to health care can literally be a matter of life and death for people who have or are at risk of getting HIV. Antiretroviral treatments have been a breakthrough that has turned HIV into a chronic disease, but people with HIV need to use them appropriately to keep their viral load low. A rising viral load will increase the health risks of HIV and make it more likely that the disease will progress to AIDS.

Broadbent was able to resume her medication, but noted the irony that it required her to become unemployed. The insurance she had while working didn’t fully cover the cost of her treatment, but unemployment status made her eligible for Medicaid, which paid for everything.

Today, she continues her activism by encouraging others living with HIV/AIDS and by providing prevention tools to those at risk of contracting the virus. Ideally, she would like to find work with a nonprofit to continue her advocacy and provide insurance to cover her medical needs. She wants more black women, especially younger ones, to talk about safe 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 sexual partners to get tested, because often we start new relationships and use condoms, then we feel comfortable and then the condoms disappear, but we never checked that person’s HIV status. An HIV infection can happen to anyone.”

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

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