HIV / AIDS Survivors Look Back on 40 Years of Travel

June 2021 marks the 40th anniversary of the US Centers for Disease Control and Prevention (CDC) first reporting five cases later known as AIDS. Since then, the HIV / AIDS pandemic has killed more than 32 million people worldwide. Currently, more than 38 million people live with HIV.

According to experts, we have come a long way in prevention and treatment. But when it comes to creating fairness and fighting disinformation, there’s more to do.

“We have effective medicinal weapons. We are testing.” Johnathan BlakeHaving lived with HIV in the UK since 1982, he told Berrywell. “But there is still this stigma that stops people, because what if I get a positive diagnosis? Will I be shunned by my community?”

HIV / AIDS timeline in the 1980s

HIV occurred before the 1980s, but 1981 is a year that will be forever marked as the beginning of the HIV / AIDS crisis. In 1981, five young, previously healthy gay men in Los Angeles developed a rare lung infection, Pneumocystis pneumoniae (PCP). Meanwhile, men in New York and California were diagnosed with an aggressive cancer called Kaposi’s sarcoma.

By September 1982, 270 cases of severe immunodeficiency in men were reported, and after 45% of them died, the CDC used the term AIDS or acquired immunodeficiency syndrome. But still, the researchers were not definitive about the cause.

“One didn’t know what it was.” Carl Schmitt, MBA, The Executive Director of the HIV + Hepatitis Policy Institute told Verywell. “Two, I didn’t know how to detect it, so people were just dying and there was no cure.”

The first HIV antibody test was developed in 1985 to screen blood products, but not to test people for the virus. And despite AIDS being on the scene since 1981 and living a rapid life, President Ronald Reagan did not give his first speech about AIDS until 1987.

Between 1981 and 1990, the United States alone recorded a tough milestone of 100,000 AIDS deaths, imbalanced the number of men aged 25 to 44. However, according to the CDC, AIDS was also becoming a major cause of death for women in this age group.

Diagnosed in the 1980s

Johnathan Blake

Blake, now in his early 70s, had symptoms around September 1982. “All the lymph nodes in my body started just one kind of eruption, getting bigger and bigger, and I couldn’t work anymore,” he says. He created a timeline and is relatively convinced that he was infected with HIV when he visited a bathhouse in San Francisco on a trip to the United States in early 1981.

After hospitalization and biopsy, he was diagnosed. “They told me it was a virus and there was no cure for it,” he recalls. “And I was basically able to live for six months,” the healthcare provider told him would receive palliative care.

Then, after re-examining Blake’s blood sample, his doctor informed him that he had HTLV-III. HIV was not the official name for the virus that causes AIDS until 1986.

“I was the first person to be diagnosed with this particular virus at Middlesex Hospital,” says Blake. “I was shocked. I was a kind of numbness. And I was basically a kind of closure.”

Blake says he hid in his apartment and began planning to kill himself at the age of 33. “And of course, my mother’s voice came to my mind,” he says. “And she said,’Jonathan, you’ll get rid of your own turmoil. You won’t leave it to others.'” And it said, “I can’t kill myself. I’ll continue to live. But how are you going to do that? ”

So he went together for a demonstration, says Blake. It was there that he met his partner Nigel Young. He is with me today.

Ed Gallagher

Ed Gallagher was diagnosed in 1985 at the age of 35. “I was told I would die really soon,” he tells Berrywell. “In the face of that, I donated almost all of my money to various AIDS research purposes. No one knew what was going on. What worked and what didn’t. , There were all kinds of research, suggestions, research. T. ”

Like Blake, Gallagher in his early 70s still clearly remembers the great sense of loss at the time. “Everyone I knew died, and there was no support system at all. Many died lonely and were abandoned,” he says.

First attempt at treatment

In 1987, the Food and Drug Administration (FDA) approved the first antiretroviral drug. Zidovudine, also known as azidothymidine (AZT), was an anticancer drug that could have failed. And Schmidt says it wasn’t very effective — some people with HIV became drug-resistant to it.

Prior to drug approval, Blake states that some study participants received AZT and others were offered the opportunity to participate in clinical trials that they did not receive. He refused.

“It basically saved me,” he says. “What the old chemotherapeutic drug was doing was to wipe out the entire immune system, wipe out the cancer, but wipe out everything. So you had nothing to fight.”

AZT has a controversial history in the fight against HIV because of its serious negative effects. However, it has also accelerated the development and progress of antiretroviral therapy (ART).

The latest strategies for treating HIV

T cells, a type of white blood cell that fights bacteria and viruses, are measured by what is called a CD4 count. HIV reduces the number of T cells that are functioning in the body. Near the end of 10 years, Blake’s CD4 cell count fell below 200 and he was diagnosed with AIDS.

Blake’s primary care providers are taking the antibiotic sceptrin, PCP, Infectious diseases that can be fatal to people with HIV / AIDS. His doctor also added acyclovir, an antiviral drug that helps prevent shingles. This is what Blake continued to develop.

It was his cure for the next six years until his health declined again. “By 1996, there was a fair amount of medicine,” he says.So he started what is now called Combination antiretroviral therapy (cART), Use a combination of several different types of drugs to interfere with the viral replication cycle. Ideally, this will reduce the viral load to undetectable levels.

“Treatment is good not only for those who have access, but also for society, because once the virus is suppressed, it cannot be transmitted to others,” Schmidt says.

Schmidt said that advances in cART have allowed HIV-infected people to live longer and live a relatively normal life. “This is a remarkable success story,” he says. But he also admits that it’s not perfect. Patients may still experience drug resistance, reactions, or side effects.

Gallagher, which was taken when cART became available, needed relief from pain and other side effects.

“I wouldn’t have been sane without a compassionate cannabis program, especially Sweetleaf Joe,” says Gallagher, who is now blind as a result of HIV and is fighting cancer. Since 1996 Sweetleaf CollectiveFounded by Joe Airone, it has begun offering free medical cannabis to HIV / AIDS patients in the San Francisco region. Since then, Gallagher has been using this program.

Prior to cART, people infected with HIV had to manage some medications on a tight schedule.

“Now we are at the point where we are giving people a monthly injection that they can take,” says Schmidt. “And we are considering expanding it by injection to once every two months, and there will be other long-acting oral regimens that can help people.”

Treatment and prevention are inextricably linked

People who are not infected with HIV can also take cART as a precautionary measure. HIV Pre-exposure prophylaxis (PrEP) Is a cart that can reduce your risk of getting HIV by 99%. “The insured has no cost burden,” Schmidt adds.

Currently, PrEP is a once-daily pill, and Schmid states that it can be a barrier for some people to take it. But he adds that in the near future, the PrEP option could be a monthly or annual implant.

“That’s why we say we can end HIV,” Schmidt explains. Prevention is one of the biggest pillars. “Through the condom, yeah,” he says. “Clean the needle through the syringe service, but also through PrEP.”

Health inequality is in the way

While there appear to be tools to end HIV in the not too distant future, barriers still exist, making that goal difficult. One disparity includes access to PrEP and education on PrEP.

For example, in 2016, white men having sex with men were six times more likely to use PrEP than blacks of any gender. According to the CDC, in 2018, 42% of all new HIV diagnoses were black.

“People have to know about it,” says Schmidt. He explains that cultural competence is needed among health care providers. Healthcare providers should be accustomed to talking about different types of gender and discussing with patients of all genders, sexual orientations, and races.

In many cases, there is no spread of Medicaid in some states, so even if the patient is not insured, there are barriers to access to treatment. “That’s why we have programs with these discretionary funds. Ryan White Program, It not only provides medical care and medicine, but also social support services, “says Schmidt.

Stigma, prejudice, misunderstanding

After 40 years of fighting HIV, Schmidt, Gallagher, and Blake say they failed to remove one of the biggest barriers to treatment, testing, and prevention.

“There have been many changes, such as drug advances, but only the stigma hasn’t changed,” Schmidt says.

Gallagher in his 70s now remembers the stigma of the 1980s. “Everyone was surprised during the early days because no one wanted to catch it and no one knew how to get it,” he says.

Blake recalls false information about contagion and leading to harmful perceptions. “I had a dear friend, who is surprisingly still a friend,” he says. “But whenever I dine with her, she had a special cutlery set that only I had ever used.”

Some people still carry these misconceptions, blaming those who are HIV-positive today, and fear and judgment are often rooted in a person’s sexuality and lifestyle habits. “It’s nonsense,” says Blake. “It’s a virus. It can affect anyone.”

Future outlook

For more than 40 years, Schmidt’s immediate goal is to increase the number of people who are infected with HIV for treatment and to increase the number of people at risk of HIV to use PrEP so that virus suppression can be achieved. is. “Therefore, we can reduce the number of new diagnoses,” he explains.

However, HIV researchers continue to aim for vaccines as well. One of the reasons scientists were able to get the COVID-19 vaccine so quickly was because of all the HIV-focused research over the last few decades.

So why don’t we have an HIV vaccine? “HIV replicates much faster than COVID, and that was one of the problems in getting the vaccine,” Schmid explains.

But he thinks the table has changed now. The COVID-19 research is driving a new research frontier for HIV. “It’s been 40 years,” he says. “It’s too long. I need to finish it.”