Since then, there’s been a lot of progress made, but stigmas remain.
On his 27th birthday in 2012, Raif Derrazi was dying and in denial about having HIV.
“It progressed all the way to AIDS. And so, basically, I was knocking on death’s door,” he said.
AIDS is a rare diagnosis in modern day Los Angeles. But 40 years ago, before it had a name, it was a mysterious disease striking young, gay men across the country. Each case, part of a puzzle, yet one couldn’t put it together, until a group of immunology researchers from UCLA had a Eureka moment.
“Our team saw a first patient who had something unusual, something very different,” said Dr. Michael Gottlieb with APLA Health. The patient was one of five men suffering from an opportunistic infection called Pneumocystis pneumonia.
This type of pneumonia wasn’t new, but Gottlieb and his UCLA colleagues knew it rarely occurred in people with intact immune systems. After running many highly specialized tests on their immune systems, the unaccounted piece became clear.
“A type of blood cell called the helper T-cell or CD4 cell had essentially gone missing,” Gottlieb said. “They’re an important cell of the immune system. Dr. (Anthony) Fauci had once called them the conductor of the immunologic orchestra. The immune system doesn’t function very well without them.”
Gottlieb and his fellow researchers documented their findings in a landmark CDC report. The first to describe what would later be called AIDS.
“We knew the enemy, and we knew what its characteristics were,” he said.
In 1984, the virus that causes AIDS was officially named human immunodeficiency virus, or HIV. It spread quickly through the gay community, but not exclusively.
Today, heterosexual people make up 24% of cases in the U.S. And much like COVID-19, HIV disproportionately affects communities of color.
Organizations like APLA Health were founded to help patients battling both stigma and illness.
“The prognosis for HIV today is dramatically different from what it was back in the 80s,” said Gottlieb.
“My doctor was kind and gracious and loving. He was able to get me on medication that very day. And within six to nine months, my immune system had done a complete 180. Now I’m healthier than I’ve ever been,” Derrazi said.
HIV has not stopped Derrazi from becoming a professional bodybuilder. Antiretroviral drugs would have been viewed as a miracle 40 years ago.
But the holy grail, an HIV vaccine, remains elusive.
“HIV is a much trickier virus than COVID-19,” Gottlieb said. “It has a much trickier way of getting into the cells and evades the immune system.”
But scientists have made inroads in prevention like pre-exposure prophylaxis, known as PrEP – a pill that blocks HIV transmission in those who take it.
And the discovery that HIV patients who take their medicine can reach undetectable viral levels, which makes it “untransmittable,” or U=U.
“Undetectable equals untransmittable,” Derrazi said. “Meaning that when you’re undetectable, you can no longer transmit HIV sexually to anyone else.”
Yet a vaccine isn’t the only hurdle. As much as science has progressed, people’s attitudes have not.
“I feel like the stigma is the last major hurdle that we as a society, as those of us living with HIV and who have loved ones living with HIV, have to overcome,” Derrazi said.
“We need role models. That means people willing to talk about their own diagnose and come forward,” Derrazi said.
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