How Covid-19 impacted HIV/AIDS care in the US, by Krishna Stone

THE New York City-based GMHC, which was founded as Gay Men’s Health Crisis in 1982, is the world’s first HIV and AIDS service organisation. Krishna Stone, its Director of Community Relations, has been involved with GMHC since 1986, originally as a walker in the first Annual AIDS Walk New York, later volunteering at GMHC, and since 1993 as a member of their staff. Krishna, who has received awards from the New York City Department of Health and Mental Hygiene among others for her outstanding dedication to combatting the spread of HIV, was in 2021 spotlighted by POZ Magazine as one of the top Black advocates who are making a difference in the fight against HIV and AIDS in the United States. She speaks at a briefing on her organization and how the COVID-19 pandemic impacted HIV/AIDS care. Excerpts:

How and why GHMC started

GMHC started and moved through the 40 years as quickly as possible about how the programmes and services expanded and working to meet the needs of the people who needed our services, and then also where we are now in terms of the parallels between HIV and AIDS, the HIV and AIDS epidemic, the COVID-19 pandemic, and the monkeypox also known as MPV outbreak, and how we are balancing all of the issues faced by the epidemic, pandemic, and the outbreak and parallel – parallel patterns that we have learned from the HIV and AIDS epidemic.

So, if you google June 5th, 1981, most likely the CDC report, the morbidity and mortality report will come up, and in that report there is an article written by a number of physicians about their patients, all of whom were gay men, who were presenting with rare infections and ultimately dying very quickly. And that was the first government report even though prior to June 5th, 1981, one of our founders, Larry Mass, Dr. Larry Mass – he’s still alive and wonderful – he wrote an article for a newspaper called the New York Native, which has since closed, asking like what’s going on here, this is what I’m hearing.
And then on August 11th – on August 11th, 1981 – our six founders, all of whom were gay men, gathered in the late Larry Kramer’s living room. He died. He’s one of our founders and he died in May of 2020. And they brought their supporters there and they brought a doctor who basically was sharing what he was seeing. And as with many disasters, people do gather together to try to figure out what to do, and so between August 1981 and January 1982 this organization was founded. And also, as well as grassroots organizations, the programs and services developed based on who was coming through the doors, who was calling, what did people need. And the term “urgent care” meant something very different versus the urgent care centers that you see today.

So urgent care meant let’s get this person connected to care before they die. So, we were trying our best to help, in the early years, people die with dignity. And as we – as I talk further, we were – with the advent of medications in the mid-’90s, we were helping people to live with dignity.

So, one of the first programs was the hotline, and for some of you, you may be too young to know what an answering machine was, but a telephone was connected to an answering machine in one of our volunteers’ living room. He later became the first paid executive director. And it was basically a message on that machine saying: Please leave your name and number and we’ll call you back with whatever information that we have. And there wasn’t a lot of information in 1982.

Another signature program was the Buddy Program, which is still around, which is – consists of volunteers who then ultimately went through trainings to do this work, to visit our clients who were living and dying with AIDS during the early ’80s, and just to provide emotional support. Because what was happening was that our clients at that time were being disowned by family members and friends because there wasn’t enough information. And so, the volunteers were able to step in and be supportive and connect them to lawyers if they needed to work on a will, or a therapist who could help them with the impact of the diagnosis of AIDS.

And I remember a really fabulous psychologist once saying that when people would hear their diagnosis, whether it was HIV or AIDS, it was like being given a sentence with post-traumatic stress disorder, and I never forgot that. And that still can be the case today when people are diagnosed with HIV.

So, what we were also seeing as the programs began to develop, as funding started to trickle in, we were developing a legal department. We were having a meals program because people with AIDS were shunned in restaurants – they weren’t welcome – and setting up individual counseling sessions and support groups for people living with HIV and AIDS. And so the programs began to expand, again, based on the needs of the people coming through our doors. And so, we moved in – a couple of times in the last 40 years as our programs began to expand.

One of the things that is – was very much connected in the early years of the epidemic, and tragically still is, is stigma, which for some folks – which is a word that people are like, “What does that mean?” One of the definitions that I think really says what stigma is, is a mark of disgrace. And so as long as people were and continue to be shamed about who they are and who they have sex with, the shame will continue and affect their health and well-being. And we still continue to see that in – and shame and stigma manifests in many ways. It creates barriers for people to access care, whether it’s HIV testing or care services or HIV prevention programming. So that is still an epidemic in its own right in terms of shame that’s connected to HIV and AIDS.

So, in the mid-90s – we’re moving to the mid-’90s now – we – that was the beginning – well, AZT came in at ’88, ’89, and then more medication started to be rolled out in the mid-’90s. So, our clients began to live longer and they wanted to address more issues on a long-term basis versus a short-term basis.

So again, our programming expanded to include workforce development. People wanted – they started to feel better, so they wanted to go back to work or start work. They wanted to work on their relationships or their family challenges. And so, the programming continued. And the populations that Sarah – Dr. Sarah – showed you mirror the clients that we serve, whether they are living with or affected by HIV and AIDS.

And so, our programming around prevention expanded. Our community outreach continued to expand. You can’t just sit in an office building and expect people to come here. We have to go out into the communities. We have worked in coalition with the health department and our community member – community partner organizations and faith communities and corporations, and so you can’t do this work in isolation.

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HIV, Covid-19 and Monkeypox

And so here we are. So, we are now dealing with – so HIV and AIDS, COVID-19 pandemic, and the monkeypox/MPV outbreak. So, what’s happening is that people who are long-term survivors who are living with – who have been living with HIV and AIDS for 15, 20-plus years, 30-plus years, they are being retraumatised because they’re seeing people die of COVID-19, they’re seeing people – or with infections that connect to MPV, and they’re being shamed. Shamed for having COVID-19. Shamed for having monkeypox. So, it’s triggering people who have been living with HIV and AIDS for a very long time and it’s causing increases in requests for counseling for mental health and substance use issues, and it’s a lot to balance. And it’s a lot to balance for those who are newly diagnosed with HIV of, like, how do I deal with all of these diseases and illnesses and all the health disparities that are connected to these – the epidemic, pandemic, and the outbreak.

Sarah – Dr. Sarah mentioned some of them: homophobia, transphobia, poverty, racism, violence, immigration status, mental health and substance use issues, shame and discrimination. So essentially what I’m trying to say is that HIV and AIDS today is a multilayered experience. It requires multilayered services and programs and different strategies. You can’t just talk to somebody in one way and say, well, that’s going to fix everything. Here’s a condom. No, it doesn’t work. And so, prevention work is multilayered. Services – care services, public policy advocacy. And so, it requires all of us trying to understand how this connects to the populations that we serve, and that’s how we’re going to continue to move forward in our work on a daily basis and also with our partnerships.

Covid-19’s impact on HIV/AIDS

What happened for us is that, at GMHC, we had to work remotely. We could not close. That was not an option. And we did continue to reach out to our clients by phone, by email, by the Zoom meetings that began. We did shift out to instead of having congregate meals on site to grocery bag distribution. What we did see and what we were very concerned about was that our testing center had to close and we mailed out at-home test kits, but we were concerned about the fact that people were still struggling to access medical care, HIV testing, and that we might see a rise in new infections a year or two years later. So, we’re monitoring that along with our colleagues at the health department.

For the monkeypox outbreak, MPV outbreak – I hope they change it to an acronym because that word is crazy – that we had to expand our work to ensure that our clients living with and affected by HIV and AIDS who met the criteria for vaccines, we helped them to navigate what began as a very complicated system, and we advocated for improvements for the system in setting up appointments. We received a grant from the health department – yay – and we have expanded our community outreach in specific boroughs to alert people around vaccines and treatment and care, and we will continue to do social media posts, create discussions, and looking forward to a social media campaign that I’m working on. So that’s where we are – while balancing all the other health disparities that are brought on by the pandemic and epidemic.

When the MPV outbreak started, we did see that there were some similar patterns that occurred in the early years of the epidemic and COVID-19, which was, again, the one health disparity, which is racism. We were worried that vaccines were primarily going to white gay men. We understood that that was data that was being followed; however, we understood that – from GMHC’s perspective that we knew that the health department and – we had to work – we wanted to work with them to make sure that black and brown communities would receive the same equitable care and support and access to vaccines. So – because we’ve been doing this work for years, so – and we understood that the health inequities that were there then, many are here now, so – but our partnerships are key to decreasing or addressing the health disparities.

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Sharing best practices on a local, state, and national level, and even global when we can or international level, is so important. What are you doing? How is this working? How can I be of help? We need to share that information and also the challenges, the successes. Otherwise, we don’t grow in our work.

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