On a March morning in Homestead, Pennsylvania, just southeast of Pittsburgh, the Allies for Health + Wellbeing mobile testing van parks outside the Rainbow Kitchen food bank, where people in need of groceries stop by to fortify their pantries.
“Hey, can I offer you a tote for your stuff?” says Allies community advocate DeVar Ferguson to a man carrying plastic bags filled with food. Ferguson pulls one from the Allies table, which is also stocked with free condoms and dental dams to prevent the spread of sexually transmitted infections (STIs).
Ferguson and community health manager Anitra Branch also invite those who stop by to make use of Allies’ free HIV, Hepatitis C, and STI testing services. The results come back within minutes, and anyone with a positive test is quickly connected with a medical case manager.
“We’re here to take care of individuals living with HIV,” says Allies CEO Sean DeYoung, “to make sure they’re stably housed, and they get the good health care they need, whether it’s with us or with one of the other systems.”
Allies, which now serves 11 counties in the area, started out as the Pittsburgh AIDS Task Force (PATF) in the early 1980s in response to the HIV / AIDS crisis. At the time, a group of gay bar owners approached the University of Pittsburgh seeking more research into the illness that was killing men in their community.
This launched the Pitt Men’s Study, which helped advance medical understanding of HIV, the deadly virus that causes AIDS. There is still no cure for HIV, which affects more an estimated 38 million people worldwide. But researchers just announced hopeful developments in the clinical trial for a novel vaccine regimen.
Advocates associated with the study created the Pittsburgh AIDS Task Force as a way to provide legal and social support for people with HIV when many who were infected with the virus faced discrimination and isolation. (The organization changed its name to Allies for Health + Wellbeing in 2017.)
Since its creation 36 years ago, the organization has expanded its services to meet the evolving needs of people with HIV and the broader community. Allies now offers behavioral health services, medical case management, in-clinic and mobile HIV and STI testing, HIV prevention medications, a food pantry, and education. Allies remains the oldest and largest AIDS service organization in the region.
We spoke with five people associated with Allies. Their perspectives offer more about the organization’s approach to health care and the history of America’s efforts to understand and combat a pandemic that began four decades ago.
Perspectives below have been edited from interviews for brevity and clarity.
This story is equipped with a feature called SoundCite. Click on highlighted words with a “play” icon to hear directly from the subjects interviewed.
Alan Jones works for Allies as a senior health advocate. He is the longest-serving staff member at the organization, and joined the Pittsburgh AIDS Task Force more than 30 years ago. He started as a medical caseworker and now performs HIV and STI testing and counseling in the Allies clinic. We spoke with Jones on the street outside the Allies mobile testing van.
I became a volunteer in 1990. I had three different friends at that time who had been diagnosed with AIDS, and actually all three of them would be dead in the next two years. As a gay man, I just felt the need to help.
There were only 15 people in the organization when I came on staff. I was a caseworker for the first nine years. I would help people get housing, get on disability and home care. My opening caseload was 102 people, which is unreal. They all had AIDS, and they were all dying. At one time, I had 13 clients die in seven weeks.
When I switched to providing testing, and I first started having to tell people they were HIV positive, I used to get very upset because I knew the outcome. I tried not to show that, of course, but now when I tell someone, it’s not a death sentence.
These days, I’m testing someone every half hour, and they could be anywhere from 13 years old to 80 years old. I like that our testing is now mobile as well, so we can reach people living with addictions or people with mental health problems, people who are disenfranchised from mainstream culture, especially if they’re economically challenged. With the mobile testing van, we’ve discovered people who are HIV positive and we’ve been able to link them to services, which is a good thing.
I’ve seen HIV go from people having a lifespan of two years to people living with it for 30 years. I have some clients from the mid 90s who are doing very well, who have jobs and they’re working, and it’s nice to live to see that.
In 2003, long before DeVar Ferguson began working for Allies, he received a positive test result for HIV at an Allies’ clinics. His viral load fell to undetectable levels after a year of treatment. He now works as a community advocate for Allies.
Due to stigmas from family, work, and society, people don’t always want to go into the centers to get tested because they’re already fearful. So by coming out into the community with privacy and a staff that loves what they’re doing, then you can connect with people and get past those levels of fear.
I believe when a person can connect, when a person cares, that’s when they want to open up. When they feel they can be safe with a person, then they’ll put their finger out to get pricked. Their ears are then open to hear what treatment they might need because any time a person tests positive for anything, there’s a breaking point.
Even the most educated person in 2021 knows you can get medicated and live fine [with HIV], but still there’s a breaking point where you feel like you’re dying. Who can I tell this to? I don’t want nobody to know. You feel dirty. You go through so many things. So, what we try to do instantly is provide a catch system. If we’re going to deliver a blow to you, we want to catch you and try to get you back up on your feet before you can actually hit the ground.
It was Alan, actually, who delivered a positive result to me in 2003. I was just telling him how, years ago, how gentle he was with me because he delivered the news and then caught me. And to think I would come and get a job at this organization and work with the guy who did for me what I’m trying to do for others.
We have a great healing system. A lot of people we deal with don’t have insurance, so it’s also about letting them know that it’s safe because they’ve been shunned at other places because they don’t have insurance. So it’s just letting them know — anybody who wants to get in, we want to help them.
Clarisse Jordan contracted HIV in 1989 at age 18 from a boyfriend, her first sexual partner. Her boyfriend was aware he was HIV positive, but didn’t disclose his status to Clarisse. She came to the Pittsburgh AIDS Task Force in 1995, first as a client, then as a volunteer. She has supported the organization in various ways for 25 years.
I wanted to volunteer because I had determined I was not going to let HIV take me out of here. I was not going to let it beat me. So I joined the Pittsburgh AIDS Task Force Speaker’s Bureau and started speaking at schools and community centers and churches. I also became a mentor to newly diagnosed people and people who are just living with HIV and trying to get to a place of acceptance. I tell people they have to get to acceptance because then and only then can they live a happy life.
HIV is the disease I have, but it has nothing to do with who I am. It has nothing to do with my integrity or my character. I still deserve to be happy. I live every day, and I don’t tolerate stigma. I don’t tolerate it at all.
When I came out having HIV, there weren’t a lot of support groups. There was nowhere you could go and talk. But I’m a talker, I’m a nurturer — that’s just who I am. For a lot of people [at Allies], I’m like a mom or an auntie, or just a safe space. Sometimes you just need to know that you’ve got a safe shoulder that will hold you when you need to cry. I didn’t get that, so I’ve always wanted to be that for someone else.
This clinic has become a home to me. It’s like family to me. They help a lot of people, and I believe in the work they do, so that’s why I continue to do it. HIV is still here. It is 100 percent preventable. All you have to do is protect yourself. But now, even if you get it, you can live a long and healthy life. That’s the one thing I tell people all the time. ‘Okay. You’re HIV-positive? Okay, what’re we gonna do now? We gonna sit and die? Or we gonna get up and live?’
Glendon Hyde is a client at Allies, and an artist who works with recycled and discarded materials. He returned to Pittsburgh, his hometown, three years ago, after living for decades in New York and San Francisco, where he made a career as a famous drag queen known as Anna Conda. He tested positive for HIV in the early 1990s, and came to Allies after trying several other healthcare providers he says were dismissive and discriminatory.
I really started connecting with Allies through Matthew, who is a therapist there. It’s been a really rough year, but I definitely don’t think I would have made it without Matthew’s guidance. I’m bipolar and have PTSD from very severe sexual abuse when I was young.
Just recently, I had a very bad experience in an artist’s residency, and because I was able to go in every Friday and talk to Matthew before and after that happened, I was able to at least navigate for the first time ever what was happening and have some understanding.
People who are poor and who have a lot of problems, we often get marginalized and sort of put on the back-burner, but the fact that I can call Allies and say, “No, I really need to see my doctor as soon as possible,” and they work with me… the fact that I may be off-kilter and they compensate for that… there is so much welcomeness in their practice. They knew what I needed and they were there to support me in a way that I have never found in another organization.
I’ve never had a viral load since I started taking medications, and I’ve lived long enough to feel gratitude for the ability to have a life and to still be here and to follow my dreams. Because I lasted long enough, I now get to pursue my dream of being an artist. That opportunity alone is such a gift. So many people who were presented with death and shame as the only option. To live long enough to rise above that has been really fantastic.
Sean DeYoung is chief executive officer at Allies. He is a licensed clinical social worker, and previously worked in various foster care and youth care agencies and programs. He is currently vice chairperson of AIDS Free Pittsburgh, and serves on the Pittsburgh HIV Commission and the board of directors for Ryan White Clinics for 340B Access.
When I started five and half years ago, we had 24 people on staff and now we have 52. We’ve added behavioral health to our services. We have a pharmacy program to make sure people are getting their meds. Our budget has more than doubled, and it’s just been an amazing journey. We’ve grown so much, but everybody is here for a reason — to help. They have a passion to reach the community we serve.
One of our next goals is to add a dental clinic, which will be a big deal, because unfortunately, there’s still a tremendous amount of stigma around HIV, and a lot of dentists won’t see people living with HIV. To have a stigma-free place for folks living with HIV to get their dental care, I think that’s going to be important for our community because we don’t have that now.
I think the future of our organization is going to need to look at our aging population. There are a lot of individuals living with HIV who are healthy who are now aging, who are going to have unique situations because of their HIV. There are housing concerns and, more importantly, there are nursing home concerns.
We see a lot of people who are aging into nursing homes who are getting rejected because of the cost of their medications. How are we going to care for folks who need nursing home care who have HIV? But it’s also about keeping people in their homes longer and providing home health care for people living with HIV.
Unfortunately, there hasn’t been an increase in funding for HIV programs in decades, but the number of people living with HIV continues to grow, so we’re going to need more funds for supportive services because we don’t have a cure.
Pennsylvania, fortunately, is a Medicaid expansion state, so we’re able to get insurance for our uninsured clients, but in states, like Georgia, without Medicaid expansion, they’re seeing more HIV infections in utero, which is something we haven’t seen here in years. So, even though we’ve come a long way in terms of combating HIV, this is still a virus that needs attention and funding to suppress it and care for the people who live with it.