By Dana Goldman, Photography by Jack Kearse
If you live in Atlanta, chances are you’ve passed the Ponce de Leon Center a hundred times and not seen it.
The building is gray and nondescript, set a discreet distance away from its namesake street in Midtown Atlanta. Signage is intentionally poor. “There’s no question we don’t put a lot of signs up,” says medical director Wendy Armstrong. “There is still a profound amount of stigma, and if you walk in, people assume you have AIDS.”
Over the past two decades, thousands of Georgians living with HIV/AIDS have walked into this former church administrative building, donated to Grady Hospital in the early 1990s. A part of the Grady Health System and staffed by Emory doctors and researchers, this clinic serves about 5,200 people.
The patients who come here are mostly poor, and mostly minorities, working low-wage jobs and living in unstable housing situations with little access to medical care. Just 3% have health insurance, and some are illegal immigrants. Many already have progressed to late-stage AIDS by the time they make it to the Ponce Clinic, having lived with the disease for many years while it went undiagnosed and untreated.
“They’re very sick,” says Emory nursing professor Marcia Holstad, who has worked with the women’s clinic since its beginnings as a small, unhoused, volunteer-run program in 1990. “A lot of the time HIV is the least of their problems. They have issues with their children, housing, substance abuse, and depression.”
For Holstad, Armstrong, and other Emory faculty, doing this work goes beyond traditional patient care. Armstrong says that Atlanta’s epidemic of late-stage AIDS in vulnerable populations is so profound that despite her other research interests, “it became clear that my focus has to be finding people who are affected, linking them to care, and retaining them in care. If we can’t get people into care, we’ve failed this population.”
Reducing viral loads with personal attention
That focus informs both treatment and research. One of the country’s largest AIDS clinics, the Ponce Center is a core facility for Emory’s NIH-funded Center for AIDS Research (CFAR). At last count, the Ponce Center was hosting more than 50 studies, with results of completed research cycled back into the Ponce Center’s plans to improve clinical care of patients.
For example, Vince Marconi—an Emory physician who is associate medical director of the Ponce Center—sees patients and conducts research on factors that impact responses to treatment. “These are people who may have trouble taking their medications, so we identify the reasons that may happen. Do the problems have to do with financial or transportation limitations, health literacy, engagement with providers, or is it a biological reason?” he says. “We try to understand what can we do as a system, either through improving our services or through biology, for those who are already significantly challenged when they start treatment.”
Close ties to staff are encouraged, since research shows that relationships with medical providers can be a deciding factor in health decisions. After all, say staff, helping patients manage their HIV requires not just removing barriers to health care but also supporting clients as they stabilize their lives.
A case in point is the on-site Transition Center, a sub-clinic for patients struggling with the triple whammy of HIV, mental illness, and significant substance abuse. Armstrong and colleagues recently completed a pilot study to see if patients’ health improved when they received the Transition Center’s intensive, flexible, one-on-one model of care rather than standard treatment. The results? Patients’ viral loads of HIV went down significantly.
In a follow-up study, scientists asked patients why the Transition Center had made it easier to manage their health. It turns out that “patients there felt like they had an intimate relationship with their care, their place of care, and their care providers,” Armstrong says. They described their caregiver as “a person who cares about you and knows when you’re out on the street and when you’ve fallen out of care and knows who your family is. They may know you better than anybody else.”
Keeping patients engaged
To build on this data, researchers designed Project Retain. In collaboration with the University of Miami, the Ponce Center is creating retention clinics for newly diagnosed AIDS patients. In the clinics, patient navigators will give personal attention and support, helping patients work out logistics of treatment and accompanying them to appointments. Researchers hope to see improved retention rates among patients participating in the program.
In another recent study, clinician-researcher Marcia Holstad and colleagues worked with a producer to write and record songs in a variety of genres focused on AIDS-related adherence. Participants received MP3 players with a 70-minute program of these songs. Between songs, a DJ posed questions to health professionals about AIDS, followed by scripted AIDS-related banter with would-be callers.
In comparison with a control group, participants who listened to the music saw a decrease of HIV in their blood. But that wasn’t the end of the impact. “We had people call us after they’d listened to it asking for music videos,” says Holstad. “In our focus groups, people said they shared this music with their families so their families could understand what they were going through.” One patient used the music to help break the news of his HIV status to his family. Currently Holstad is working to convert the music project into an interactive app for a follow-up investigation.
The clinical and research outcomes at the Ponce Center belie its limited resources. The center’s primary financial support comes from state-administered AIDS grants and the federal Ryan White Care Act, which comes up for Congressional reauthorization in 2013. In the meantime, space is so tight throughout the building that exam rooms double as clinician offices. While the building is seven stories, the top two floors have not yet been built out because of funding limitations.
Still, staff and patients know that relationships are more important than the quarters in which they’re cultivated. Hundreds of Ponce Center patients choose to enroll in studies each year, in part because of the trusting, long-term relationships that they have with their care providers, many of which now span more than a decade.
“In the old days, when combination retroviral therapy just started, we resurrected a lot of people,” says Holstad. “The folks I’ve been with for a long time are people I was able to start on medications and see them get resurrected from near death.”
Many of those patients now make appointments around Holstad’s schedule. “If Marcia’s not here, we’ll wait,” they say. Holstad recalls one patient she began seeing around 15 years ago. “I got her through her pregnancy, went to her wedding, and her son is 13 now. I get goose bumps now thinking about it.”
But there’s another important reason that patients participate in research, says Emory nursing professor Drenna Waldrop-Valverde. “They tell us repeatedly that they really value the opportunity to tell us their stories, something that’s often rare for people living with HIV. Although they know they personally won’t necessarily benefit from the research in any direct way, they really feel like they’re helping others and their community. A lot of people really want to know what we find out and what we learn.”
Patients are excited to give back, according to Armstrong. “People have told me, ‘I was planning my death. I never expected to be able to plan my life.’” But, through the Ponce Center, that’s exactly what they’re doing. EH