Successes and Challenges Facing HIV Service Providers in Prince George’s County
We spoke with Dedra Spears-Johnson, M.S., cofounder and executive director of Heart to Hand, Inc., an HIV/AIDS service nonprofit started in 1999.
Dedra Spears-Johnson: I’m originally from Georgia but moved to PGC in 1991 as a public health adviser for the CDC [Centers for Disease Control and Prevention]. My job was to tell people that they were HIV positive. I once had to tell a mom that both she and her newborn baby were positive. I was actually preparing to go to law school, but the stigma around HIV here was so bad and there were not as many resources here as in Baltimore or D.C., so the cause just stuck for me. By the late 1990s, the meds had just begun to get better, but the side effects were bad. The whole thing just grabbed me in a surprising way, and I wanted to make a difference.
So in 1999, with my best friend Sally Joseph, who passed away from lung cancer in 2009, I started Heart to Hand. We weren’t satisfied with the care that we thought people were getting and wanted to start something with a community feel for this majority-black county, to create something where people felt they had a family around them that saw them as a whole person and helped them understand that HIV wasn’t the end, that it didn’t make them dirty or untouchable, that sex was something we all did and it was OK, and they could have a full life. So we started at our kitchen table and got our first grant in 2000 and would drive around in my van to distribute condoms and literature.
Tim Murphy: Tell us a little about HIV in PGC today.
DSJ: Baltimore and PGC carry the most HIV cases for Maryland. Our rates are going down slightly — but more slowly than in Baltimore and D.C., half their decrease of 13% to 14%. Men who have sex with men make up almost half of our cases, but hetero cases are more than 40%, and the funding doesn’t always reflect that.
As for transgender and nonbinary folks, we’re serving more of them, and we’ve had support groups for them in the past, but we don’t know what their HIV rates look like. Two transgender women of color were murdered in our city recently. There’s not a whole lot of special services for trans folks in PGC, so that’s something we’re trying to change.
TM: Talk a bit about what services you provide at Heart to Hand and what progress you’ve made.
DSJ: We’ve grown to be a full, holistic, sexual health organization. We’re focused on HIV but aim to increase education and awareness about sexual health in general. So we screen and provide low- or no-cost treatment for HIV as well as other STIs. We’ve been able to get funding and grants for the most part, so we don’t have to turn anyone away. We have an infectious disease doctor who comes here up to three times a week and a pharmacy in our office. We have medical and nonmedical case managers, so if someone comes in newly diagnosed with HIV, we can quickly get them into treatment and link them to ADAP [AIDS Drug Assistance Program], food, rent assistance. The majority of our programs are Ryan White funded. We also have a Spanish-speaking caseworker. We were seeing an increase in the need for serving the Spanish-speaking and immigrant population, but at some point last year, many stopped going to appointments out of fear of all this stuff going on with immigration under Trump.
We have individual as well as group counseling for both men and women. We have a mobile health unit where we go out and test in the community, the hotspots where we know that HIV rates are high, like the cities adjacent to D.C. such as Seat Pleasant, Fairmount Heights, Capitol Heights, and Landover. We have about 20 staffers, the majority African American and women, with some LGBTQ people.
We serve about 200 clients in our HIV clinic. We also have some clients on pre-exposure prophylaxis (PrEP), and we have a PrEP navigator. We use [the individual’s private] insurance or the Gilead [patient assistance] program to onboard them, and we’re in the final stages of finalizing our protocols around our PrEP system.
TM: What are you proud of?
DSJ: That in the past decade we’ve been able to add all these services. We literally went from being the smallest to among the largest HIV/AIDS agencies. We also have AIDS Healthcare Foundation here.
TM: What’s the headline with HIV in PGC?
DSJ: We’re on track to, if not end the epidemic here, working together to combat it. We still have a lot of work to do in terms of getting and keeping people on meds and getting them virally suppressed. We’re at about 75% to 80% suppression rates for our clinic, but we’re trying to increase it. In 2016, about 1,455 of the roughly 7,500 people living with HIV in the county did not know their HIV status.
TM: What are the biggest challenges?
DSJ: We’re not seen as an urban area, but we have a lot of urban problems — poverty, HIV, infant mortality rates, social determinants of health, unemployment. But we fall between the two eligible metropolitan areas (EMAs), D.C. and Baltimore, for HIV funding, so we’re not supported in the same way. This is the first time we’ve been targeted at the federal level for more money. The only thing is, we need money for things that the funding doesn’t allow, non-programming things like staff infrastructure and capacity building, administrative evaluation, additional data analysis staff.
I’d also create a specific campaign that speaks to individuals in our community around sexual health with a focus on getting them screened for HIV and other STIs. Now we’re able to talk and work more with individuals who are HIV negative and do more health education and risk reduction with them.
TM: What are the daily challenges on the client level?
DSJ: Housing is such an issue. It’s expensive in this area. And if you don’t have housing, you’re not thinking about your HIV treatment. We currently own only one housing unit and we rent it to a client. We need a two- to three-year scatter-site transitional housing program to help people get on their feet. Also, we offer some counseling around mental health and substance use, but I’d love to build stronger partnerships with other agencies.
We have one or two clients who pass away each year, and some clients who are very hard to keep in care because of substance use, homelessness, and mental health. I have a young man in and out here who is pretty much homeless. He comes in so hungry. He’s waiting for a bed at a shelter. People don’t think that happens in PGC [because we look suburban].
TM: What’s your goal for the coming year?
DSJ: I’m actually doing succession planning. I’ve been doing this work full-time the past 10 years. I’m not leaving tomorrow, but I need to step back and grow and train people so that as I transition out, I’m ensuring sustainability for us.
I also want to create more sexual health awareness throughout the county. We did a small campaign on the sides of buses and at bus shelters and metro stops. We also just did a little commercial in movie theaters. I’d like to do a massive, positive campaign. I’m talking to county council individuals about doing a community support group with storytelling. Baltimore did that. I would like to get all kinds of people in the room with each other, talking about their stories. Most people in PGC have someone in their family with HIV, whether they know it or not.
TM: Tell us some stories of your own.
DSJ: We had a 20th-year gala in February, and my mom came. We had clinic that day when she was here with my daughter, and this young African-American female client came in. And my front desk person said to her, “Oh, that’s Miss Dedra.” The woman ran up to me and gave me the biggest hug. I’m getting chills just thinking about it. She said, “I can raise my children now because of what you did for me. I love you.” So she, me, my mom, and my daughter are all there sobbing in front of the elevator. That is the reason why Sally and I started this place, because we wanted people to live full lives without HIV dominating it. My mom said to me, “Now I understand what you do — and I’m so proud of you.”
Positive POV: Juan DeCosta
Juan DeCosta, 60, from Cheverly, Maryland, is disabled but volunteers in an arts center. He was diagnosed with HIV in 2008.
Juan DeCosta: I grew up in D.C., served some time in the military, then came back to D.C. and wound up working for a restaurant group for 15 years, then started doing catering at law firms in D.C. That’s when I first got diagnosed with both HIV and hepatitis C. I’m not really clear how I got either one, but I wasn’t feeling good. I’d go in to work at 6 a.m. and not get off until midnight, so I thought it was just that I was burned out.
So I go to the hospital, and they were running many tests and couldn’t find out what was wrong, so they admitted me and asked if I wanted to take an HIV test. I said yeah but didn’t think anything of it. A few days later, the doctor tells me I’m HIV positive. That blew my mind. I wanted to say to him, “Do you realize you have just destroyed my whole world? I’m married, I have a family, a job.”
I didn’t find out about the hep C until later, when I had stopped working, which made me lose my insurance. I met Dedra at Heart [to] Hand through some friends of mine at a church I was going to. They knew about the organization. So I go up there and meet Dedra. They were working out of an apartment building at the time and didn’t have all the services they have now. I was going there for a men’s support group. I was traumatized. I thought it was the end of the world. But Dedra took me under her wing, held my hand, and told me how to navigate services and advocate for myself. She was an angel to me.
So by this time I’ve linked up with a health provider out here in Maryland who used to work for the National Institutes of Health. He told me, “Juan, you’re OK with the HIV, but if you don’t do something about this hep C, you’re not gonna be around much longer.”
So I became one of the very first people to go into trials for the new hep C drugs. It cured me right away. No side effects.
So I was with my primary doctor for a long time, but their services were terrible. I couldn’t even get them on the phone to make an appointment. In seven years there, I had nine case managers. I liked my doctor, so it hurt me to leave him, but in the past year I’ve been going to Heart [to] Hand. I love Dedra’s staff; she has a lot of young, knowledgeable, passionate people working for her. It was Dedra who first took me to the local HIV planning council, and I’ve since done work with them.
TM: How would you describe the HIV situation in PGC?
JDC: It’s an epidemic here. We’re right on the border of D.C., so you’ve got people jumping back and forth all the time, so their treatment and care is hard to track. Not everyone goes to the doctor regularly like me. There’s still a lot of stigma; people are scared and frightened. Thank God for agencies like Dedra’s. She has a public outreach program, but I think HIV information needs to be publicized a bit more through traditional and social media. We need to get the message out that these statistics are real.
TM: What would you say to someone newly diagnosed with HIV?
JDC: Hold on. It’s not a death sentence. Go to a doctor or health provider, take your meds, and trust and believe that you’re going to live longer than you can imagine. Already, 11 years of my life have passed with HIV, and health-wise, they’ve been good. If I hadn’t talked to you today, I wouldn’t even have thought about my HIV. This might sound crazy, but if I hadn’t been diagnosed with both HIV and hep C, my life probably wouldn’t be as good as it is right now, because I wouldn’t be taking care of myself as well as I do. So for me, HIV has been like a curse and a blessing at the same time.
I still go to the men’s support group. I get a lot out of it. Last week, our topic was aging with HIV. I still sometimes have a sense of loneliness and need to be connected to my brothers and sisters with shared experiences, and the group gives me that. I don’t mind meeting newly diagnosed people. I can be an ear to help someone and give them some information.