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Living With HIV in the Coronavirus Outbreak

As they struggle for answers and self-quarantine out of fear, HIV-positive and immunocompromised people experience a surreal — and traumatic — sort of déjà vu

In the 1980s, as a young and sexually active gay man in New York, Eric Marcus was at high risk for contracting HIV. While Marcus remains HIV-negative today, he’s found himself once again vulnerable to another deadly disease. Sixty-one and living in Manhattan’s Chelsea neighborhood, he’s at the epicenter of the deadly coronavirus.

“It feels completely surreal to be going through another epidemic,” Marcus, founder and host of the Making Gay History podcast, tells MEL. “The synapses in the part of my brain where my AIDS crisis experiences reside are absolutely firing.”

Right now, the number of individuals who’ve tested positive for the infectious disease COVID-19 tops 341,000 globally, and correlations between the coronavirus and the HIV epidemic are hard to avoid. But for Marcus, an HIV activist and journalist who saw friends die from HIV/AIDS over decades, the similarities between the two viruses are not about the pathogen’s microbes. Both diseases expose the failings of our healthcare system, leaving hospital workers, volunteers and local communities to fill in the gaps of the government’s inaction, he points out. “Both are examples of how regular citizens marshal their forces to do what the government is either unwilling or incapable of doing.”

Marcus’ point rings true for many people who experienced both outbreaks. Survivors of the AIDS epidemic are experiencing a traumatic sort of déjà vu watching the coronavirus outbreak unfold and the country’s leaders fail to act accordingly. Exacerbating those fears is the very real problem of testing for COVID-19 — especially for people who are immunocompromised.

In a Pandemic, Living With HIV and Without Answers

People living with HIV tell MEL they’re struggling to receive definitive answers on their health status. Alex Rodriguez, a 23-year-old student at the University of Utah studying health communications, emailed his HIV doctor on March 11th to learn if he has a high risk for contracting COVID-19. His doctor couldn’t give a concrete answer. “I know that it isn’t her fault,” he says.

On March 13th, the British HIV Association announced that there “continues to be no evidence” people with HIV are at a higher risk for COVID-19. The statement came as momentary relief for Tom Hayes, an editor at Beyond Positive. “We all just need to take every precaution we can to protect ourselves and those around us,” Hayes tells MEL of people living with HIV. “Just like everyone else.”

Still he’s worried about how people living with HIV and other individuals with pre-existing autoimmune diseases will be treated publicly during rampant spreading of coronavirus. “Where there’s a virus, stigma is never far behind,” Hayes says.

Rob Toth, 61, has learned to stop worrying, lest stress weaken his immune system. For 31 years, he’s lived with AIDS. He’s also a stroke and heart attack survivor with stage-3 kidney disease. “Worry is like a rocking chair: It gives you something to do but it doesn’t get you anywhere,” Toth says. So he mutes the television when he sees coronavirus updates and goes for walks in his hometown of Lakewood, Ohio. He also stocks up on his medication — including a 90-day supply of HIV drugs — in case a shortage occurs. Toth takes 15 pills a day. “I am blessed in that I am still here,” he tells me. “The majority of my contemporaries are dead. I will survive this. It’s a health declaration.”

To identify a correlation between HIV and COVID-19, we need widespread testing. Frustratingly for people like Rodriguez, Hayes and Toth, test centers are just starting to roll out across the country. Meanwhile, by Monday evening, nearly 45,000 people and counting had already tested positive for the coronavirus.

“When you don’t have the testing and you don’t have the numbers, you can’t give people certainty,” says David Malebranche, a physician specializing in HIV/AIDS treatment and professor at Morehouse College’s School of Medicine. “We don’t know what we’re doing, therefore we can’t tease out if someone living with HIV is [high-risk].”

Because the CDC offers no definitive answer, many HIV specialists and primary-care physicians are falling back on old tenets of autoimmune viruses to dole out advice. Malebranche says evidence suggests that people with a low T-cell count (which indicates immune suppression) and and who have pre-existing cardiovascular conditions are at a greater risk for contracting coronavirus.

Put simply, it’s best to be cautious. “If you’re living with HIV, even if you’re undetectable, your immune system is in a constant state of inflammation, so you don’t know how your body is going to react,” Malebranche says.

The AIDS Epidemic Never Ended

During a White House press conference last week, Dr. Deborah L. Birx, the state department’s U.S. Global AIDS Coordinator, touted her 30 years’ experience researching vaccines and immunology for HIV/AIDS. “We had another silent epidemic: HIV,” Birx said. “And I just want to recognize the HIV epidemic was solved by community: the HIV advocates and activists who stood up when no one was listening and got everyone’s attention.” Birx stood next to Vice President Mike Pence, who as governor of Indiana oversaw a devastating HIV outbreak in 2015.

According to the World Health Organization in 2018, nearly a million people still die every year from HIV — nearly four decades after its discovery. That year, approximately 37.9 million people across the globe were living with HIV or AIDS. In 2017, 1.8 million people were newly infected with the virus. “The AIDS epidemic remains an epidemic for groups of people that our society deems expendable,” Marcus says.

AIDS was first identified in 1981, though many were dying from the disease years earlier. A vaccine was found in 1984, but it took another three years until the country’s first HIV clinical trial began. President Ronald Reagan didn’t mention AIDS publicly until 1985.

Some of the policies implemented to combat AIDS still affect the response to coronavirus — most notably, the blood-donation ban on men who have sex with men. In 1983, as the HIV/AIDS crisis accelerated, the FDA barred this group from donating blood. In 2015, the FDA updated the policy from a lifetime ban to requiring a one-year abstention from sex.

Today, centers like American Red Cross are facing a blood shortage in the wake of the coronavirus pandemic and asking healthy Americans to donate. The controversy over a discriminatory ban reignites every time the Red Cross faces a shortage, such as the 2016 shooting at gay nightclub Pulse in Orlando, Florida. “Since I have had sex within the last calendar year, I am ineligible — despite the fact I take Truvada for PrEP (an HIV preventative drug) every day and receive a full sexually transmitted infections panel every three months in order to keep receiving prescriptions,” David Oliver, a social media editor for USA Today, wrote in an op-ed this week.

People who followed the government’s response to HIV/AIDS see echoes in the current president’s actions. This isn’t the first time the government failed to act quickly in a health crisis or a president racialized a deadly disease, many queer folks on Twitter pointed out. While HIV was called the “Gay Plague,” Trump refers to COVID-19 as the “Chinese Virus.

When the Government Won’t Act

LGBTQ health organizations like the Gay Men’s Health Crisis, Los Angeles LGBT Center and Lambda Legal originated or refocused in the 1980s to help people living with HIV and AIDS. These are the same groups now shaping the country’s community-focused responses to coronavirus.

The AIDS Coalition to Unleash Power, or ACT UP, was formed in March 1987. It held rallies and die-ins to demand government action on HIV and widespread access to treatment drugs. They’re now organizing again, this time around the coronavirus.

ACT UP recently joined the COVID-19 NY Work Group coalition, alongside NYC Mutual Aid, Housing Works, Callen-Lorde Community Health Center and other groups, in an effort to implement rapid community support in New York City. “We knew that vulnerable people would be vastly neglected in city and statewide relief efforts. We wanted to ensure radical protections for these people,” ACT UP member Jason Rosenberg tells MEL.

On the federal level, 11 senators — including Chuck Schumer, Amy Klobuchar, Kamala Harris and Elizabeth Warren — are advocating for people living with HIV’s heightened social risk for contracting coronavirus. The senators sent a letter to President Donald Trump last week, urging him to address healthcare measures like anti-discrimination protections for LGBTQ people and to provide funds to community health centers.

“I’m seriously concerned about the administration’s continuous efforts to erode protections for individuals in the LGBTQ community in the healthcare setting,” New Jersey Sen. Bob Menendez, who signed the letter, tells MEL in a statement. The senators requested a response from the Trump administration by April 3rd. So far, they’ve gotten no word.

Marcus, social-distancing at home in New York, isn’t optimistic about America’s response. “I’m outraged now that our government hasn’t moved fast enough and lives will be lost,” he tells MEL. “There’s no point in attempting to place blame for past inaction. But those responsible for today’s tragic failures have to be held to account.”