Across the United States, approximately 1.2 million people are living with HIV, and the virus is disproportionately affecting Black communities at a greater rate compared to other races, according to the Centers for Disease Control and Prevention.
To help shine a light and create change, 25 years ago, Feb. 7 was designated as National Black HIV/AIDS Awareness Day, a day of observance to acknowledge the impact of HIV on African Americans. This year the theme is “Engage, Educate, Empower: Uniting to End HIV/AIDS in Black Communities.”
Over the last four decades, care for HIV and AIDS has progressed, but the stigma tied to HIV and a distrust in health care has often prevented people in the Black community from seeking or accessing care.
Eric Eason fears HIV/AIDS information is failing to reach Black communities. Eason, now 56-years-old, tested positive for HIV in his early 20s. His diagnosis in the 1980s came as the epidemic raged. The first AIDS cases were reported in the U.S. in June of 1981, and cases and deaths for people with AIDS increased rapidly. In the 1990s, new cases and deaths declined substantially.
Eason was a dancer in his 20s and attending college. He said he contracted HIV from a partner.
“I made that one mistake, I had unsafe sex,” Eason said.
He later found out his partner knew he had HIV but didn’t tell him.
“I did confront him, and he just shrugged his shoulders,” Eason recalled.
Eason said his upbringing was different than most Black families. He said his father took him to get his first HIV test, prior to his HIV diagnosis. He believes talking about HIV and AIDS and being gay in most Black families is considered “taboo.”
In 2021, African Americans represented approximately 12% of the U.S. population, but accounted for 40% of the estimated 32,100 new HIV infections, according to the CDC. Latinos made up 18% of the population and accounted for 29% of new HIV infections, while White people accounted for 61% of the population and made up 26% of new HIV cases.
The racial disparity in HIV infections is fueled by racism, discrimination, stigma, homophobia and barriers to access to health care, as well as mistrust in the health care system.
In Arizona, between 2020 and 2022 there was a 20% increase in HIV cases following the COVID-19 pandemic, according to the Arizona Department of Health Services 2023 HIV Surveillance report. The report noted that the pandemic may have affected HIV testing by projecting a lower number of HIV cases. Over the last decade, an average of 757 HIV cases have been recorded annually in the state. In 2022 there were 975 new cases reported.
“We need to continue to talk about this and get the education and the access to care out there,” Aunt Rita’s Foundation Executive Director Stacey Jay Cavaliere said.
Aunt Rita’s Foundation in Phoenix helps support and serve the HIV community through gap programs and HIV testing. The organization provides free at-home test kits, allowing people to test in the privacy of their home.
Cavaliere admits a lot of work lies ahead, but says the organization is making progress: “Through our partner agency program, we have about 15 other agencies that we partner with to educate, to go out there to the community to talk about HIV, and to engage people with PrEP and other prevention types of services.”
Spectrum Medical Care Center in Phoenix is working to help increase HIV testing and provide care in underserved communities. On a Friday night, members of Spectrum Medical drove a mobile testing truck into the parking lot of Charlie’s Phoenix, an LGBTQ+ bar. They put out signs promoting HIV testing on-site.
Two people can get tested at the same time at the mobile site, and medical staff can also provide a 30-day supply of PrEP.
PrEP is a highly effective medication that can prevent HIV transmission. It’s for people who are HIV negative.
“We have tools today to end the transmission,” Luis Montaner with the HIV Research Program at Wistar Institute said.
Research over the years has led to better medication to treat HIV, a longer life expectancy, and cures in a handful of cases. A positive HIV test is no longer a death sentence, but the stigma around it continues to pose a barrier.
“The environment now is mature enough that somebody can expect to manage their disease and continue their life moving forward as long as they are under medical care,” Montaner said.
Timothy Ray Brown, known as the “Berlin patient,” was the first to be cured of HIV following a stem cell transplant. Adam Castillejo later came out as the “London patient,” the second person to be cured of HIV with a similar treatment.
In 2003, Castillejo, a British man of Venezuelan heritage, living in London tested positive for HIV. In 2011, he was diagnosed with Stage 4 lymphoma.
Six months before Castillejo was selected for a stem cell transplant to treat his cancer, he recalled getting sent to hospice.
“I was sent to a hospice to die,” Castillejo said.
Castillejo’s life changed when he was offered a bone marrow transplant. He said his doctor told him he would cure his cancer and his HIV with the treatment. Castillejo said it felt like he won the lottery that day.
The journey to a normal life has been a roller coaster for Castillejo, who said that discrimination remains prevalent. He pointed out how differently he was treated when he revealed his different health battles.
“With HIV was hate, shamefulness; with cancer, it was love, support,” Castillejo said.
Castillejo is now working as an ambassador of hope.
“We're going to find a cure for you, because I’m living proof it's possible to find a cure,” Castillejo said.
Castillejo said he’s working with researchers to help find a cure.
“We have some examples that a cure is possible, but we don't have an alternative to therapy that is safe because the only reason they did that was because they had cancer, not because of their HIV,” Montaner said.
Investments in finding a cure for HIV have increased, but according to Montaner it’s still the smallest amount of investment across all areas of HIV care. He adds that a bone marrow transplant comes with a 30% to 40% mortality rate.
Until a universal cure comes along, Eason said he’ll continue to take his medication to extend his time with family, and plans to continue sharing his story to help promote testing and care. Eason said he’s proof you can live a long and healthy life with HIV.
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