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In 1991, almost a full decade after the discovery of AIDS, my partner Mike Hippler woke up in the middle of the night, vomiting blood. I rushed him to the hospital, where he made a glorious recovery, telling jokes and holding court. A few days later, I sent his body to be cremated.
For me, that was the worst year. But for the larger community, each succeeding year descended into darker, grimmer depths, as young people kept wasting away and dying. Yes, AIDS activism made extraordinary gains, spurring more money for research budgets, faster drug approval, and more targeted science — but none of that mattered. The drugs didn’t work, people kept dying, and the accumulation of deaths created a toxic mix of rage and grief and despair.
And then, in 1996, the government approved powerful new antiretroviral drugs. Taken in combinations of three, those medications literally revived patients from their hospital beds — the so-called Lazarus effect. Even though these drugs still aren’t available to all who need them — a shameful failing that cuts short hundreds of thousands of lives a year — they have saved millions of lives and transformed the epidemic.
And they lead to a lesson for COVID-19: It will get better, but only after it gets worse. At this moment, several drugs that might work against COVID-19 are already in clinical trials, and a vaccine could be developed in 18 months, maybe even 12.
Measured in time, that is very fast. Measured in deaths — or in economic devastation — it is achingly slow.
I already feel a familiar dread: looking around at those I love, wondering which ones will get sick, and which will die. Wondering if I’ll get it too.
During the AIDS epidemic, that fear was so constant that I stopped realizing I was afraid until, at long last, it settled in that the drugs were for real and the people I loved were safe.
Now, the fear has returned, along with another familiar emotion: resolve. Most people will get through COVID-19, though not unscathed. So here are a few other lessons from living through HIV.
1) Assume you are infected.
You aren’t promiscuous — you hang out with only a few people at a time, certainly not more than 10. You use hand sanitizer, the condom of our time. And you feel great.
But COVID-19 is sneaky. In lab experiments, it remained infectious for three hours in the air, and for three days on plastic and stainless steel. If you catch it, you probably won’t know for five days, maybe as long as 19 days. Some people get such a mild case that they never realize it — but they can likely still spread it. If you do, the virus might find its way into the lungs of a grandmother or someone whose underlying conditions make them more likely to die or to take up a scarce hospital bed.
We are all responsible for each other. Assume you have the virus and treat others accordingly.
2) Protection is harder than it seems.
For COVID-19, it’s called social distancing; for HIV, it’s called safer sex.
How hard can it be to use a condom? Well, it might not be up to you. You might have to persuade your partner to wear it. And even if you’re the one who puts it on, you have to use it every time. Without fail. For years and years. Even when you’re high. Even when you’re in love.
Evidence shows that people can consistently use condoms for a while — in the first years of the epidemic, gay men in San Francisco made striking changes to reduce their risk — but over the long haul, many can’t.
Today, how long can we go without dinners with friends or grandparents? Without weddings? Funerals? School? Dating? We will make compromises, take risks, and sometimes make mistakes.
3) The government will not save you.
President Ronald Reagan did not publicly utter the word “AIDS” until more than 8,000 Americans had died of the disease. President Donald Trump tweeted on Feb. 24 that the coronavirus was “very much under control in the USA” and this month claimed that “anybody that wants a test can get a test,” which is still not true.
The government did not invent safer sex — gay men did. And then they took to the streets, drowned out the opening bell of the New York Stock Exchange, stormed the Food and Drug Administration, and forced an unwilling government to act.
While today the government is, finally, gearing up to act on COVID-19, you will still have to educate yourself to figure out how to protect your own life and that of others, because guidelines can’t envision every scenario. Example: On a recent trip to Arches National Park and the Grand Canyon, my husband and I stayed in two hotels. Who knows who had stayed in them or cleaned them? So, using 70% alcohol, we wiped down every door handle, light switch, drawer knob, and surface. And we left early.
In other cases, you will use your knowledge to take calculated risks — risks that may well be crucial to maintaining the long march of social distancing. In the same way that many long-term, monogamous partners opted to stop using condoms, you might decide to get together with certain friends in certain ways — on a hike, for example, where the wind and fresh air almost surely make spreading the virus less likely than in a closed space.
4) Words matter.
Calling COVID-19 the “Chinese Virus” is partly just presidential trolling, an attempt to distract attention from early failures. Still, it’s not harmless, just as it was not harmless to call AIDS, in its earliest days, GRID: gay-related immune deficiency.
The idea that AIDS was a “gay plague” didn’t only fuel anti-gay bigotry, or sap the urgency from the search for a cure. It even warped the perception of some researchers, who were so baffled to find the epidemic raging among heterosexuals in Uganda that they almost didn’t believe it.
In the critical early phase of COVID-19, the CDC would only test people who had recently traveled in China or been exposed to a known case — a grave error that helped squander our best chance of containing the epidemic.
5) Everyone can get COVID-19 — and that is our best hope.
HIV hit despised and marginalized groups: men who have sex with men, IV drug users, people with low incomes, and black people. Most of the population, and certainly most people in power, were not at high risk.
But COVID-19 is an illness that anyone can get, by touching the wrong surface or just by breathing. This fundamental fact, so different from HIV, is profound. Even as we all self-isolate — indeed, because we are all self-isolating — we are realizing that we are all interconnected. Anyone who catches the virus can spark a chain of transmission that reaches you or your mother or your grandfather.
This fact gives each of us tremendous leverage, much more than any AIDS activist ever had.
Look at what happened with undocumented immigrants and asylum-seekers. As COVID-19 spread in the US, individuals from public health advocates to immigration judges to elected officials used their voices to raise the alarm that immigrant detention facilities were a viral “tinderbox.” Fearing that an outbreak could spread beyond the prison gates, ICE is now cutting back on all but “mission critical” arrests.
People who are homeless or incarcerated or so poor that they have no choice but to live crammed with 10 people in a one-bedroom apartment — they are all connected, through the supply chains that bring goods to our stores and doorsteps, through the underpaid jobs that keep our world spinning, through the very air we all breathe, to movie stars and politicians and me and you. With a virus this contagious, what we do unto the least of us, we do unto all of us.
We are seeing glimmers of this realization. Leaders of both political parties have embraced a strategy that was not possible even in the teeth of the Great Recession: mailing checks to millions of Americans. They realize that if a fifth or a third of Americans lose their jobs, we will all suffer.
It is often said — and it is true — that AIDS galvanized the LGBTQ community and, over the long run, led to many gains. I firmly believe that I would not have been able to legally marry my husband if AIDS had not mercilessly revealed the heroism and humanity of queer people.
But the gains were not worth the cost, and the scars we carry do not heal in “the long run.”
Any gains that come from COVID-19 will not be worth it, either.
The virus is here, though, whether we fight for a better society or not. The best memorial we gave to those who died of AIDS was not anything carved in stone. It was a stronger LGBTQ community, more rights, and a health care system that worked at least a little better.
Now, with COVID-19 striking everyone, our secret strength is that we are in this together. Hold onto that truth and amplify it, because it has enormous power.
Maybe, just maybe, it will have enough power to remake America, to force us to recognize that, as much as we like to think we create our own worlds — out of political affiliations, consumer choices, digital habits — actual social distance is lonely and depressing. A less atomized America, an America where we rely on and help one another, an America that knows it can’t wall itself off from the rest of the world — that is worth hoping for and, more importantly, fighting for. Shifting the country even slightly in that direction would be the best memorial to those who have died, and to the many, many more who will follow them. ●
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Mark Schoofs is a visiting professor of journalism at the University of Southern California and an advisor to BuzzFeed News. While working at The Village Voice, he won the 2000 Pulitzer Prize for International Reporting for his series on AIDS in Africa.
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