Diary of a Pandemic: Living with HIV/AIDS and dodging COVID-19
OCTOBER 15 IS NATIONAL LATINO HIV/AIDS AWARENESS DAY. IT’S BEEN CELEBRATED FOR 17 YEARS, BUT THE 2020 VERSION CARRIES SPECIAL WEIGHT: THE PANDEMIC HAS HIT LATINOS HARD. IT POSES A GREATER RISK TO THOSE ALREADY DEALING WITH ANOTHER DANGEROUS VIRUS.
Editor’s Note: Reporting for this article was supported by the NLGJA: The Association of LGBTQ Journalists in collaboration with the U.S. Centers for Disease Control and Prevention in the Partnering and Communicating Together program. This is part of the Let's Stop HIV Together campaign.
Jorge de Jesus’ life took an unexpected turn in 2017, when he was diagnosed with HIV.
He lost his job. His relationship fell apart. He wound up living in an HIV shelter in New York.
Adapting to life with HIV/AIDS was tough at first, he said in a recent online interview with palabra. And just when he’d settled into that identity, along came the COVID-19 pandemic, and the elevated risk it poses for his community.
“Today I’m scared just to step outside,” he said. “I am most concerned because I see others out there not taking precautions.”
The coronavirus continues to impact public health in different and dramatic ways. The U.S. Centers for Disease Control and Prevention says Latinos have emerged as the nation’s ethnic group most vulnerable to HIV/AIDS. A number of social factors raise the risk for Latinos, such as inequality in education and income, a language barrier and other cultural divides that delay HIV testing and care. Undocumented Latinos also tend to avoid institutions to guard against deportation, thus cutting themselves out of some HIV services.
And while these are not Latino-only problems, the fear of community stigma, discrimination and homophobia are barriers to HIV/AIDS prevention and care efforts.
Jorge de Jesus
Hope amid the pandemic
But on days like October 15th, National Latino HIV/AIDS Awareness Day (NLAAD), de Jesus feels like he can take a moment to consider what his life would be like -- especially in 2020 -- without the support of activists energized by the day’s history and intent.
“I would not know where I would be today if it wasn’t for the help … provided to me,” he said, “especially during this pandemic.”
COVID-19 has made life difficult for everyone, de Jesus said. He only visits doctors online, his treatment program has become harder to follow, as have the rules for living in the shelter he calls home.
This is why he credits his community’s 2020 attitude, which he boils down to “making sure no patient is left behind.”
Right now, there is no effective cure for HIV, but it can be controlled with proper medical care. And while de Jesus says he’s lost the support of many family and friends because of his condition, his current support system of activists and caregivers has given him a new purpose: He wants to deepen his education on HIV/AIDs prevention, and then use that to educate his own family. Education, he said, is the most important tool in stopping the stigma that negatively affects his emotional, mental and physical health.
De Jesus says the pandemic has actually brought some changes to health care for the community that his family can relate to. For example, he said, virtual visits with doctors were once thought of as a service only provided for upper-class patients. Now it’s there for everyone. And, if needed, his support crew from New York’s Latino Commission on AIDS can help him get in-person counseling sessions. That means following another set of strict guidelines during visits, including mandatory masks and social distancing.
Abdier Benitez
HIV: Everyone’s business
Abdier Benítez likes to point out that the pandemic has helped the broader public understand the special needs of people already living with HIV/AIDS.
In a talk on Zoom, Benítez told palabra. that raising awareness “is now everyone’s business.”
“It is very common when I am dealing with heterosexuals, who do not see HIV as something that affects them directly, that they tend to see HIV as something that affects the white LGBT community,” he said. “They do not think that HIV is something that could affect them, or at least a family member or friend they know.”
Benítez coordinates a group of activists in the Latino Commission on AIDS in New York. And today, in that role, he and the LCOA are putting in extra time to reach out to a roster of clients who cannot work from home during the pandemic.
LCOA looked everywhere -- “under the rocks,” Benítez said -- to acquire new resources and to deliver on its mission to not leave any client or patient homeless.
LCOA quickly turned to “modern” virtual outreach, utilizing as many free platforms as possible, including Facebook, Instagram and Zoom in order to stay in touch with patients in care programs, to provide educational talks, and to recognize when a client needs individual attention.
Benítez said LCOA’s close ties to the community make it a natural partner for New York City and state officials, especially as it’s become necessary to find ways around the pandemic to keep up with HIV testing, including sending out tests to homes.
The LCOA’s theme for this year’s awareness day is “Living with HIV or Not ... We Are Together in This.” To Benítez this means helping his family -- his clients -- stay safe in the pandemic, and to use society’s growing awareness about public health to educate everyone on HIV. This, he said, can help form a protective social circle around the most vulnerable.
“We need to show the community the importance of NLAAD day, without them thinking that it is an exclusive event for people diagnosed with HIV virus,” he said. “They must understand that HIV is a reality that affects and impacts everyone in one way or another.”
Outreach to families
With threats to Latino families increasing in 2020, Benítez said he wants to strengthen the social network around his clients.
“What will help you maintain a healthy life is the people who are around you, giving you all their support,” he said. “In the same way, it helps us with the issue of prevention and education and how to avoid the virus’ spread.”
In previous years, the Latino Commission on AIDS held an event at New York’s City Hall, where the community was encouraged to bring friends and family, and people who needed to be connected to the social and health services provided by the city and state.
As with many other 2020 events, that gathering has gone virtual. People can access special programs around the anniversary -- and find links to testing, support for transgender women and family planning, among other things -- via the group’s website, and in Facebook Live educational seminars.
But do these feel-good events really help?
Jorge de Jesus emphatically says “yes.”
During this coronavirus pandemic, de Jesus and his Puerto Rican family reconciled.
They are rebuilding a relationship damaged “out of fear,” he said. “But being so closed (off) we were forced to handle old wounds that we had ignored for so long.”
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Maria Luisa Imbachi won the 2019 James Aronson Undergraduate Award for Social Justice at Hunter College in New York. Born in Colombia and raised in East-Elmhurst, Queens, Imbachi was a staff writer for The Athenian, and a reporter and presenter for the biweekly journalism broadcast, Hunter News Now. As a “dreamer” and beneficiary of a scholarship from TheDream.Us, Imbachí has written about the lives of vulnerable people in her community.