HIV Long-term Survivors Awareness Day marks new future for patients

AUSTIN (KXAN) — June 5 is HIV Long-term Survivors Awareness Day, marking the anniversary of a 1981 CDC Morbidity and Mortality Weekly Report that first described cases of what would later be called HIV.

In 1983, HIV reached Austin; five years later, a group of people with AIDS opened The Austin Immune Health Clinic as "radical hospice care" for those diagnosed with the disease. That clinic expanded its operations over the years, and currently is under the name ASHwell.

"We were offering holistic care, and a lot of emotional, spiritual and physical support so that their death was a lot more humane than a lot of queer people were being allowed back then," said Jeremy Stilb, ASHwell associate director of communications. "Homophobia was a real driving force -- people were rejected from their families, people were losing friends, they weren't able to disclose their status. A lot of times, they were suffering in silence."

Public perception during the early epidemic years believed that HIV and AIDS only affected gay men, with some calling it "gay cancer" and The New York Times calling it "Gay-Related Immune Deficiency," according to HIV.gov.

"It was a group of queer people who came together and said, 'you don't have to be afraid.' A lot of them were going through the same thing. It was a 'for us, by us' mentality," Stilb said. "They could offer people the care that they needed without fear of retribution. It was creating a safe space for people to die with some dignity."

In the 1980s, nearly 69,581 people in the U.S. died from AIDS. Around five times more people in the U.S. died from AIDS during the 1990s, with the HIV virus reaching an wider population beyond gay men in the 1990s and 2000s.

According to a 1999 report from the Texas Department of Health's Epidemiology Division, "Texas had 54,881 [people with AIDS] reported since the start of the epidemic in the early 1980s." More than half that number had already died by the report's publication.

Since the introduction of effective antiretroviral medication, what was once an untreatable and fatal illness, is now not.

"HIV isn't the boogeyman that it used to be... I think a lot of times previously, even five years ago, the reaction would be like, 'this is going to destroy my life,'" Stilb said. "Like diabetes, it can be managed. It's not curable, but if you're taking your medication and going to regular doctor appointments, it's incredibly manageable."

With daily medication treatment, HIV patients can live much longer lives, with undetectable viral loads and "effectively no risk" of transmission, according to the U.S. National Institute of Allergy and Infectious Diseases (NIH).