We ignored AIDS. Let’s not repeat the mistake on long COVID https://www.nj.com/opinion/2024/03/...peat-the-mistake-on-long-covid-editorial.html Written by the editorial board of the Star-Ledger. 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. ... 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. ... 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.” ... 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.” ... 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. ... 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.
