In the earliest days of the AIDS crisis, America ignored the problem, even though people were dropping dead by the thousands.
We’re repeating the mistake now with long COVID. Millions are suffering, but the government has largely turned its back, as new cases emerge with each passing wave.
So people are coming from all over the country this week to Washington D.C., in the footsteps of AIDS activists, to protest at the Lincoln Memorial on March 15th. They’re desperate for their stories to be heard.
No, long COVID is not an illness with a certain death sentence, as AIDS was in the early 80s. But those who are sick with long COVID today are facing years of disability in the prime of their lives. They’re trapped in a world of crippling fatigue, chronic pain, brain damage, blood clots and despair, with no approved drugs for treatment.
And yet, the National Institutes of Health recently allocated only about $129 million per year, on average, for an initiative to study Long COVID over the next four years – which is paltry compared to the billions some other diseases get yearly for clinical trials and research, that affect far fewer Americans. We had an “Operation Warp Speed” for vaccines. Why not long COVID?
The demonstration in D.C. will be livestreamed for those too sick to go, as most are, with more than 16 million limping along and maybe 4 million seriously affected. So, whatever the size of the crowd is, envision 10 times more watching from home.
And they need our help. The rest of America isn’t seeing the full effects of this because so many people with long COVID are homebound, confined to their beds. “I hope there’s more people out there like me, who consider themselves allies,” says Paul Hennessy, who helped organize this on behalf of suffering friends.
“They need folks to pass the baton to, who can fight for them.”
We finally got it together on AIDS, after activists joined forces to compel our government to take it seriously. Billions were invested, treatments were discovered, and by 1997, the death rate had plunged by nearly 50%. That’s the hope now for long COVID: That America will wake up.
A plague of the young
The largest group of people afflicted is younger than you think: Those aged 25-39 have the highest rates of long COVID, closely followed by adults aged 40-54, according to the Centers for Disease Control and Prevention. And as they struggle to adjust to life-changing disabilities, they’re still getting the virus over and over.
Even for those who improve and can walk a whole block, or a mile, one reinfection could land them right back to being housebound, says Dara York, a co-organizer with long COVID. “What we’re seeing is just tons of young people giving up,” she says. “They’re losing hope.”
Like a formerly healthy 27-year-old from Bernie Sanders’ home state of Vermont, Charlie Vallee, an intelligence officer with brain fog so severe that he struggled to read and got lost in a grocery store. He killed himself in 2022.
The Twilight Zone
For those with long COVID, it feels like they’re living in a totally different reality than the rest of this country, they say – one that’s largely invisible. Millions have disappeared from their active lives like ghosts, and for the most part, nobody noticed.
It has echoes of a 1988 speech by Vito Russo, of the AIDS activist group ACT UP: “Living with AIDS in this country is like living in the twilight zone,” he said of an indifferent public. “It isn’t happening to them. They’re walking the streets as though we weren’t living through some sort of nightmare.”
Perry Halkitis, dean of the Rutgers School of Public Health and a former member of ACT UP himself, thinks long COVID activists are the best hope now for waking up Americans to the long-term implications of this disease and the need to fund research and better vaccines, when only 20% got the last booster.
“Be out in people’s faces, to make them realize this thing exists,” he said; “This is an extremely understudied area. Extremely.”
Taboo
Like many with long COVID, York initially hardly spoke about her illness, even to friends, because of the stigma. It’s often dismissed as not serious or, worse, not real.
“If I asked them to put on an N95 mask to have a visit with me, or to take a test first, they won’t understand because they’ve been told it’s mild for most people,” she says.
A former avid hiker, she’s been mostly bedbound for the past two years since one of her kids brought home the virus in 2021. She was severely disabled by lingering symptoms, even though she was fully vaxed – and recently had a stroke at the age of 44, only weeks after getting COVID for the fifth time.
“It’s just spreading out of control,” she says. “So, it doesn’t matter that when I go out, I wear an N95. When people in a big household live together, if everybody is not doing the same thing, people are exposed.”
Yet even wearing a mask is treated like a joke these days. “Woman Still Wearing Mask On Plane Must Have Inside Information About Next Pandemic,” an Onion headline cracked in November. But then, so was AIDS in 1982: When a reporter asked Ronald Reagan’s press secretary about the new illness ravaging the gay community, he and much of the White House press corps laughed about it.
Stuck in 1985
Reagan didn’t even mention AIDS until three years later, after more than 5,000 people had been killed. Then, angry AIDS activists scaled the walls of the Food and Drug Administration, stormed the National Institutes of Health, bombarded meetings and marched on Washington. They jolted the establishment to act.
It led to faster testing and treatment of experimental drugs; now, thanks to these activists, HIV research is a gigantic global success story. But when it comes to long COVID, we are still in 1985.
President Biden has hardly mentioned long COVID, even though leading scientists, clinicians and advocates wrote an open letter to him in December, urging him to address the crisis. “Millions more will develop Long COVID over the next several years,” they warned.
“Mr. President, your father Joseph Biden Sr. has said, ‘Don’t tell me what you value. Show me your budget, and I’ll tell you what you value,’” they wrote.
Activists invited the head of the CDC, Mandy Cohen, NIH director Monica Bertagnolli, Biden’s top health officials, Xavier Becerra and Rachel Levine, and all 21 members of the Senate health committee to their demonstration in D.C. this week. Yet as of Friday, none have said they’re coming.
That’s right; as people physically crushed by this virus prepare to haul themselves from states like California, Georgia and Florida, officials in D.C. are waffling.
People with AIDS were at grave risk and facing a dire prognosis, but many had lots of energy to make trouble, chaining themselves together to block traffic on Wall Street, and staging die-ins with fake tombstones and epitaphs like “VICTIM OF FDA RED TAPE.”
Those with long COVID can’t join demonstrations easily; but still, many, like York, are risking their health, and reinfection, to show up. She’s planning an 8-day road trip from California with her partner at the wheel – putting her feet up and wearing full body compression garments to avoid blood clots and fatigue.
The former frontline nurse struggles to speak after her recent stroke, but is determined to give a short speech on behalf of those who can’t. “We really need help, because we’re being failed right now, big time,” she says of the lack of government action. “I’m still a nurse. I may be disabled right now, but my responsibility towards other humans didn’t disappear.”
Others who are too sick to go are sending videos from darkened bedrooms to screen at the protest. Like Tania Powers, a foodie who loved restaurants and performing karaoke, but now spends most of her days in bed, with tinted glasses because she can barely even tolerate light.
“I’m one of the invisible people,” she says…. “This is not how I want to be seen, this is not how I want to be remembered. I was a very different person. I was articulate, and I loved life. And I’m trying not to cry, because my entire life has changed, and I’m not living. I’m just existing.”
Let’s hope that America hears her, and doesn’t repeat its shameful legacy of 1982.
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