*Editor’s note: Wilson Gomez is a journalism student in SF State’s Journalism 575 Community Media this spring. Taught by professor Jon Funabiki, the class is a collaboration with El Tecolote.
In the era of COVID-19, many people are still getting used to masks, gloves, sanitizer and social distancing, but for patients who cope with chronic immune disorders to avoid infections, this is nothing new.
“They knew that everyday communicable diseases like the common cold could put them in mortal danger since their bodies were not equipped to fight infection,” said Jim Sliney, director of patient content at Patients Rising, a nonprofit that helps people with chronic and/or life-threatening illnesses, such as people living with HIV, which attacks the body’s immune system.
According to Sliney, while it was already risky for patients who had a weak immune system to go out before the epidemic, it’s downright dangerous now. Cancer patients in chemotherapy risk their lives every time they go to the hospital since chemo weakens their immune system and hospitals have a high concentration of people with COVID-19. On top of that, not everyone is taking shelter in place and social distancing seriously.
Conservative activists have taken to the streets in recent weeks to protest the closing of schools and businesses, often declaring that COVID-19 isn’t real or isn’t as deadly as scientists say. For some, an epidemic of this scale might be new, however for people who lived through the AIDS epidemic of the 80’s, there is a sense of eerie similarity.
Only 35 years ago, while the world was in the middle of the AIDS epidemic, New York’s then-governor, Mario Cuomo, who is father of current Gov. Andrew Cuomo, closed gay bars, bathhouses, and any other location frequented by gay individuals deemed “high-risk for sexual activity.” A poll conducted by the Los Angeles Times at the time found that a majority of people in the country were in favor of quarantining people with AIDS.
“I was 24, maybe 25, when I went to visit a friend in St. Vincent’s Hospital on 7th Ave. in New York City. I never found him,” said Vincent Crisostomo, program manager of the Elizabeth Taylor 50-Plus Network. “The hospital was overrun with AIDS patients and didn’t have enough beds, so those who didn’t have a room laid on gurneys in the hallway.”
According to Crisostomo, The Elizabeth Taylor 50-Plus Network is a San Francisco-based organization that helps AIDS survivors aged 50+, who never expected that they’d live to 50, cope with AIDS Survivor Syndrome.
Crisostomo, who says that while San Francisco hasn’t been hit as hard as other cities, is stunned by the news coming out of heavily impacted cities. “I can honestly say, we never thought we would experience anything even remotely similar in this lifetime, yet as of March 16—here we are,” Crisostomo said. “Our members are finding that it is one thing to live in isolation by choice and it is another to have it imposed on you.”
That is one of the areas where the Elizabeth Taylor 50-Plus Network tries to help, by providing people in quarantine a sense of community. People are learning new skills, reaching out to family and planning on how they want to live their lives once the quarantine is over. According to Crisostomo, one member told him: “I’m so tired of being pissed off and angry at everyone. I realize that I have had 37 really good years, and if I don’t make it through this, I don’t want to go out angry and pissed off. So, I am making changes.”
As for what will happen after the pandemic, no one is sure. “Our hope, which is the hope of all chronic illness, rare illness and immunocompromised patients, is that healthcare will become more patient focused as a result of this crisis,” Sliney said.
Using technology like Telehealth, which allows patients to see doctors without having to physically go to a hospital will be crucial going forward.
“It’s important to remember that to help the immunocompromised communities have the kind of rich, interactive life they deserve, we have to look at social distancing and prevention as a social good. Caution and common sense must no longer just be something sick people have to practice,” Sliney said.
According to Crisostomo, most experts say it takes about 25 years for people who experienced major trauma to unpack that and for the insights to set in and integrate. “There are so many things in the world that are wrong and so many things in the world that are right. I see this as a time to reset,” Crisostomo said. “My thoughts are that if we use science as our guide while remembering the lessons learned during the quarantine all people not just PLWH will be that much better.”