Some commit to staying inside until there’s a coronavirus vaccine, and some look to help
In 1996, Portlander James Cox was teetering on the edge of death with his second terminal AIDS diagnosis. Healthy individuals usually have a T cell count of 500 to 1,600. T cells measure the amount of lymphocytes, a type of white blood cell that indicates immune system health. Cox had a count of just one.
The early release of antiretroviral drugs saved his life in the nick of time that year. His doctor started treatments the day they were available. But by then, the AIDS epidemic had already taken an immeasurable toll on Cox.
“I’m one of those that really did lose my entire circle of support and friends, and partner back in the early 90s,” he said.
As of 2018, AIDS has taken an estimated 770,000 lives worldwide, according to the World Health Organization.
Cox was certain he would have been part of that death toll.
“I had a lot of survivor’s guilt. I live with a lot of survivor’s guilt. I wasn’t supposed to be here, but I am. There are both blessings and curses in that,” he said.
When he was well enough, Cox took a long look at his life and leaped careers from marketing to public health with Multnomah County. There he worked in prevention of sexually transmitted diseases and later in early childhood services, greeting roughly10,000 newborn babies countywide as part of the Welcome Baby team. It was life re-affirming.
Cox is retired now, but he’s got a task at hand: reducing risk of exposure to the novel coronavirus while remaining a part of the Portland community.
“I used to really begrudge how isolated my life was. And yet, in an off way, it really prepared me well for the sheltering in place that we’re doing. For me, it’s something I’m committed to because I did live through the other pandemic.”
In some ways, what’s happening now is all too familiar. Cox was one of thousands who felt dispensable at the hands of a reluctant and homophobic governmental response to AIDS. And now, as an immunocompromised person, he and others feel dispensable as the state reopens with knowledge that the coronavirus is more lethal for those with pre-existing health conditions.
“I’m a living, walking, talking, breathing act of miracle,” he said. “And so in that, what is the same is that I’m resilient.”
Portland businesses and public spaces are now blooming after months of lying dormant. But Cox is certain that he and many other long-term HIV and AIDS survivors will continue to shelter in place because of comorbid conditions until there is a vaccine available.
Cox lives southeast of Portland in the suburb of Gladstone with his two Airedale terriers, Leona and Bonnie, named after his mother and aunt. After losing his social circle in the early 1990s, the two dogs have made living alone and processing the past all the more bearable.
“I used to really begrudge how isolated my life was,” he said. “And yet, in an off way, it really prepared me well for the sheltering in place that we’re doing. For me, it’s something I’m committed to because I did live through the other pandemic.”
The differences between the early AIDS crisis and the current global health crisis are stark in many ways. It took years to uncover the sources of transmission in the U.S. and the methods of prevention against HIV, the initial immunodeficiency virus that can develop into AIDS if untreated.
Half a year into the COVID-19 pandemic, the country has identified ways the novel coronavirus is transmitted, and the Centers for Disease Control and Prevention has plenty of suggestions about how to avoid spreading it.
Homophobia was an unshakeable and defining historical aspect of the early AIDS epidemic, too, which initially caught the public eye of the U.S. in 1981. That year, the CDC released an article detailing the “highly unusual” cases of five previously healthy young gay men who contracted pneumocystis pneumonia in Los Angeles. They all later died.
That same year, President Ronald Reagan took office. Come December, nearly 340 cases of severe immune deficiency in the U.S were identified. Over a third of them proved fatal before New Year’s.
It took two years for Congress to authorize funding for research into the virus, which was referred to by some researchers as the gay-related immune deficiency, or GRID. The term only exacerbated the false notion that AIDS was exclusively killing white gay men.
By then, a prominent conservative backlash against the gay rights movement was barreling through the country. The Moral Majority, a Christian lobbyist group led by the Rev. Jerry Falwell Sr., influenced the Reagan administration and published ephemera that heightened the stigma around AIDS .
Early on, Reagan’s press secretary teased a reporter about having “the gay plague,” and the president himself wouldn’t publicly acknowledge the illness until his second term, after Hollywood icon Rock Hudson announced he had AIDS in 1985. He died just months later.
"Everybody has their own perspective of what was happening to them in the ’80s versus what’s happening now.”
That was the year of Cox’s initial diagnosis of AIDS-related complex.
“It was a hidden thing. It was something you were going to live with until you died,” Cox recalled. “Anybody you told, you had no knowledge of how that was really going to impact your life because once somebody had that knowledge, it changed a lot of things.”
People affected by AIDS have waited decades for a vaccine — one that President Donald Trump last week erroneously said was already available . It could be within a year or two that a coronavirus vaccine is available to the public in the U.S., industry experts have told news outlets.
Cox, as well as other long-term HIV and AIDS survivors, believes the COVID-19 pandemic has only just begun.
Aging Well, an offshoot of Cascade AIDS Project, provides resources for people aging with HIV or who are personally affected by it. Participants recently convened online to compare and contrast the current pandemic with the traumatic experiences of the early AIDS epidemic — an event many believed they’d never survive.
“There was some disagreement. Everybody has their own perspective of what was happening to them in the ’80s versus what’s happening now,” program assistant Craig Kolins said.
Like Cox, some Aging Well participants aren’t planning to take public transportation or attend activities in public until there is a coronavirus vaccine available. Aging Well estimates that in the U.S., more than half of people living with HIV are over 50.
“We have many participants who really need to stay home,” program assistant Craig Kolins said. “We’ll continue to do the virtual connections even if some people do start meeting in person. That’s a personal decision that every person needs to make on their own.”
Aging Well is making participants aware of CDC guidelines for people with HIV . But the government agency itself is uncertain how the virus might affect someone with HIV differently.
“Some of that mirrors what was happening in the early part of the AIDS pandemic,” Kolins said. “This uncertainty on how it was transmitted. There were a lot of assumptions made.”
Kolins and Cox said that for those who have access to medical care and housing, the choice to stay home as the state reopens is a lot easier than it is for houseless people who have HIV.
Unhoused clients who seek care through the HIV Alliance, which provides case management, prevention and behavioral health to people with HIV in western Oregon are less likely to be regularly taking medications, program director Amanda McCluskey said.
The CDC has said that people with HIV who are not on HIV treatment are at greater risk for getting very sick.
Sixty-eight percent of temporarily housed or homeless clients at the HIV Alliance were virally suppressed — meaning medication drastically lowered the levels of HIV in their systems. But the rest may have trouble accessing consistent treatments.
“That’s been one of our biggest focuses,” McCluskey said. “There’s not a ton of research on how vulnerable people with HIV are to COVID-19. I hear a lot of theories and guesses and assumptions. And the clients do too.”
Through a new program, the organization was able to house six clients in Lane County since the pandemic hit, she said, but a handful of people who rely on the organization still lack housing.
Clients at the Alliance are also feeling economic loss during the pandemic. Since the onset of the coronavirus pandemic, the Alliance saw a roughly 20% increase in financial assistance provided to clients, many of whom are still waiting to hear back from the Oregon Employment Department as they try to avoid being exposed to the current virus.
COVID-19: State government struggles to help Oregonians through pandemic
An executive order issued by Gov. Kate Brown will require masks in public indoor spaces across Oregon’s seven most heavily populated counties starting June 24 to help reduce possible transmission of the coronavirus, but it’s unclear how the requirement will be enforced.
Mostly through technology, Cox is trying his best to stay involved and connect with others. He hopes to help other long-term survivors channel their wisdom and drive into community involvement and continue living life to the fullest.
“But right now I need to do it with a mask,” he said. "And if I’m in a place with a lot of people, I’m going to do it with goggles. And when I leave that place, I’m going to go through a disinfecting process. But that’s our new reality.”
It’s a reality he and others involved with the local chapter of Let’s Kick AIDS Survivor Syndrome (ASS) are looking to embrace by getting involved with the community at a distance. The group, which uses the term ASS to acknowledge the trauma and anxiety long-term HIV survivors often manage, is seeking opportunities to volunteer safely throughout the Portland area.
They want to put their survival experience to good use as coronavirus cases continue to rise across the U.S.
“One thing I have learned is that I don’t expect anybody else to protect me. I know that I’ve got to do my own self-protection, and I know that I feel better if I’m giving back,” Cox said. “What HIV taught me is that I’m resilient. Part of that resiliency is passion and purpose.”
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