In 1981, the Centers for Disease Control and Prevention (CDC) made its
Since then, more than 700,000 people in the United States have died from HIV-related illness.
But thanks to scientific advancements over the past 3 decades, the outlook for people with HIV has drastically improved. People with HIV who get early treatment now generally have similar life expectancies as those without the virus.
“People diagnosed with HIV today have so many more options,” Martina Clark, an HIV patient advocate, told Healthline. Clark is also an author and educator who works as an adjunct lecturer at LaGuardia Community College in New York City.
“Society is a little slow to catch up, but science has changed the game completely,” she said.
Clark was 28 years old in 1992 when she learned that she had HIV. Very few treatment options were available.
The most common treatment was azidothymidine (AZT), aka zidovudine, a type of dideoxynucleotide reverse transcriptase inhibitor (NRTI) that the Food and Drug Administration (FDA) approved in 1987 as the first treatment for HIV.
AZT can help reduce the amount of HIV in a person’s blood, known as their viral load. However, it tends to become less effective after a short period of use and can cause severe side effects.
Throughout the early 1990s, the FDA approved three other NRTI types to treat HIV. These medications also tended to become less effective over time and carried a high risk of side effects.
“There were a few treatments available at the time of my diagnosis, but they were very toxic and not well tolerated,” recalls Clark. “My doctor didn’t even suggest that I try any treatments because, at that time, my health was still pretty strong.”
Lenny Courtemanche received a diagnosis of HIV in 1992, the same year as Clark.
He hadn’t yet developed symptoms of HIV and was reluctant to take the available medications due to the risk of side effects.
“AZT was the main drug at that point, and it ravaged people’s bodies,” Courtemanche, director of Global Prevention, Outreach and Advocacy at Health Care Advocates International, told Healthline. “So I said, ‘I refuse to take it.’”
Courtemanche’s doctor made a deal with him. Regular blood tests would be conducted to monitor Courtemanche’s immune system, and as long as he stayed healthy, he could stay off medication.
Both Clark and Courtemanche lived without treatment for years without developing symptoms of HIV, but many other people were not so lucky. By 1992, HIV had become the
“We lost so many of our loved ones in our communities, our partners, our friends,” said Clark. “Whether it was gay men in a community that was hard hit or people like me who became activists and knew people with HIV because of our work, we suffered this enormous loss.”
At the 1996 International AIDS Conference, researchers reported the benefits of combining multiple drugs from different medication classes to treat HIV — including protease inhibitors and other types of medication. This combination therapy approach is known as highly active antiretroviral therapy (HAART).
In 1997, HAART became the new standard of care for HIV. It proved life changing for people living with the virus. From 1996 to 1997, HIV-related deaths declined by
Clark began treatment with a form of HAART in 2008, after learning that her viral load had increased.
Courtemanche began treatment with HAART in 2010, after contracting an E. coli infection that undermined his already taxed immune system and left him vulnerable to pneumonia.
“I ended up in the hospital with what then would have been considered full-blown AIDS,” he said. “[My doctor] said that, ‘You absolutely have to be medicated now.’”
Both Clark and Courtemanche faced challenges managing the side effects of treatment, including nausea. But the amount of virus in their blood quickly declined and soon reached undetectable levels.
“I went from a raging viral load in 2010 to zero non-detectable in 2011, and I’ve been zero non-detectable ever since,” said Courtemanche.
By lowering a person’s viral load, HAART can delay or fully prevent symptoms of HIV. This helps people who receive treatment stay healthy for longer.
Lowering a person’s viral load also reduces their risk of passing the virus onto someone else.
When the virus reaches undetectable levels in a person’s body, it becomes untransmittable. That means that someone with an undetectable viral load cannot pass HIV on to other people.
This has benefits for preventing new cases of HIV and improving quality of life of people with HIV who worry about passing the virus to others.
Courtemanche recalled a time before he began treatment when he was washing dishes next to his young nephew and cut his finger on a broken glass. “My nephew looked at it and went to grab my hand because he wanted to kiss it to make it better,” he said. “I pulled my hand away and said, ‘If Uncle Lenny is bleeding, you never touch him.’”
HIV is transmitted through blood-to-blood contact, which means that simply touching blood that contains HIV is not enough to contract the virus. But even though Courtemanche knew the risk to his nephew was minimal, he still felt fear about passing the virus on.
“Now, if I cut myself, I still bandage it, but I no longer feel like I could kill someone,” Courtemanche told Healthline. “So, from an intimacy standpoint, I think it removes a little of the fear of the world around you.”
Another boon for HIV prevention came in 2012 when the FDA approved the first form of preexposure prophylaxis (PrEP) for HIV. Someone without HIV can take PrEP to lower their risk of contracting the virus.
According to the
“I’m going to be responsible and take care of myself, and you’re going to be responsible and take care of yourself,” Courtemanche said, while describing the roles that HAART and PrEP both play in preventing transmission of HIV.
Since the advent of HAART in the mid-1990s, scientists have continued to develop new forms of treatment. Newer drugs and combination therapies are associated with a lower risk of drug resistance and side effects than older treatments.
Products that combine multiple drugs in a single pill have also become available, making oral treatment more convenient by reducing the number of pills that a person needs to take.
“As time goes by, we get better drugs and better with drugs,” said Courtemanche. “[My doctor] said, ‘There’s a new pill, it’s just one pill a day, with no nausea.’ And I thought, ‘Well, that’s a step up.'”
In 2021, the
Injectable cabotegravir (Apretude) has also been
Advancements in treatment over the past 3 decades have allowed people with HIV to live longer and healthier lives. For example, when Clark first received her diagnosis 30 years ago, she was told she likely had 5 years to live. Now she’s joined the ranks of long-term survivors.
“Over the weekend, I spent 3 days on a retreat with long-term survivors, and it was amazing to be in this room of people who were all told we had a few months to a few years to live,” Clark said.
“Now we joke about the luxury of dealing with aging because we never thought we’d be here. How great it is to feel a little achy in the morning and know it’s just because you’re 60. Every birthday, it’s like, ‘Wow, I never thought I’d be here, and it’s fabulous to get old,’” she continued.
However, these advancements are not equally accessible to all community members. Many people with HIV still face barriers to getting a diagnosis and accessing treatments.
The
For some people, the cost of HIV medications poses a significant barrier to getting treatment.
“I think it’s really important for people to understand just how expensive these medications are. My medication costs close to $4,000 a month, and if I didn’t have insurance, there’s no way I could afford that,” said Clark.
“I’ve always been in a place where I had health insurance, either on my own, or through work, or now through Medicaid, so I have never not been able to get treatment — but I count my blessings because that is not the case for everybody,” she added.
In the early years of the HIV pandemic, very few treatments were available for people living with the virus.
Since then, scientific advancements have led to the development of highly active treatments that are helping many people live long and healthy lives with HIV. Researchers have also developed preventive medications that lower the risk that someone without HIV will contract the virus.
These breakthroughs have helped improve survival and quality of life for people affected by HIV.
However, more work needs to be done to ensure that all people with HIV and those at risk of contracting the virus get the care they need.