Dorchester foot soldiers fight HIV with house calls
Mai-Anh Hoang | 2/5/2009, 7:45 a.m.
Jason Villarreal, 27, dresses in a gray, long-sleeved T-shirt with blue jeans and sneakers. He wears his hair short and keeps his face clean-shaven. He speaks in warm, smooth, steady tones.
He earns his living making house calls to clients with HIV. But when he arrives at his clients’ doors, he carries neither a doctor’s black bag nor a stethoscope.
Villarreal makes house calls not as a doctor, but as a community health promoter. His services — self-empowerment, health education, counseling, just good company — work to keep his clients’ HIV under control. Physicians in Boston call Villarreal and other community health promoters when the immune function of their HIV patients becomes life-threatening.
Ironically, in a state with near-universal health care coverage and a city with several of the world’s top hospitals, HIV patients have found that an old-fashioned house call and a human touch in medicine can make a big difference, instilling an “I can do it” belief in the lives of patients who have been physically and emotionally destroyed by their illness.
Villarreal is one of 10 community health promoters or “accompagnateurs” at the Prevention and Access to Care and Treatment (PACT) project, a collaborative effort between Brigham and Women’s Hospital and the nonprofit organization Partners in Health. His mission: to help his clients stick to a complex combination of medicines that block the virus from making copies of itself.
PACT imported the accompagnateur model from rural Haiti, where doctors match patients with a person from the community trained to help execute the doctor’s orders.
Just two months ago, Villarreal says, one of his clients became “undetectable” for the first time. This means that his client’s viral load test, an indicator of HIV severity, read less than 50. When Villarreal first met the client, he carried a viral load over 100,000.
“It helps to make a connection with somebody,” he says. “With him, I would talk about football, and then slide in [conversation] about health care.”
Villarreal has a knack for breaking down medical jargon. To explain that viral load is bad and that you want it low, he’ll say: “The ‘v’ points down, and that’s where you want your viral load — going down.”
To teach patients about CD4 counts, another health indicator, he likens it to having a lot of music CDs, a terrific thing that you want lots of.
“Walking with a person” is the way Villarreal describes his day-to-day — be it trips to the doctor, to social services or to the many stops in-between. At times, the walk can mean working as a liaison between the patient and the biomedical world of clinics, hospital waiting rooms and laboratories.
It means monitoring medications, discussing medical appointments and teaching HIV 101. And sometimes, the walk means navigating the very emotional world of a client’s depression, drug dependence or isolation.
Since PACT opened its doors in 1997, it has enrolled over 300 Eastern Massachusetts HIV patients. In a clinical study, PACT showed that its program reduced patients’ viral load by 42 percent in only six months. Because PACT patients get sick less often, medical costs are lower. Dr. Heidi Behforouz, director and founder of PACT, says preliminary results show that the program’s patients have seen their hospitalization costs and medication costs reduced by 50 percent.
Such positive results have led to a strong endorsement of the program by physicians. With evidence that its program provides cost-effective and reliable results, PACT put in a request to get its services reimbursed through Medicaid this month. Because PACT targets its work in impoverished areas, almost all of its patients are black or Latino, on Medicaid, and struggling to feed their families.
If Medicaid accepts the proposal, PACT will be financially self-sufficient for the first time, and both patients and their doctors will have another option.
“Physicians will refer a patient to PACT when they tire of banging their heads against the wall because their patient won’t take his medicines,” says Behforouz.
Behforouz explains that antiretroviral medicines have a high success rate in suppressing HIV viral load, but only when patients follow their treatment regimen perfectly. For some, this may mean taking up to 17 different pills at different times throughout the day, and taking all pills on time. Erratic pill taking doesn’t work, and drug resistance can develop when patients miss a few days, or even a few doses.
Patients form a love-hate relationship with their pills — some regularly forgetting them and others refusing them. Villarreal says some clinicians may think, “It’s a pill, just swallow it,” but community health promoters understand that it’s not so easy.
Some patients feel shame and sadness when they take the pill. For others, the pills are a daily reminder of how they got infected — through drug use, through their spouse or through a friend. Villarreal says he often hears, “You know, when I take my pills, that’s the 2 seconds of the day I think about it. I try not to think about it the rest of the day.”
HIV medicines are complex, he adds.
“It’s a very different thing to take an Advil and to take Abacavir, an HIV medication,” he says.
The differences include a long list of possible side effects for the latter — fever, fatigue, nausea, vomiting, diarrhea, abdominal pain, pharyngitis, cough and rash, to name only a few — that don’t come with ibuprofen.
By far the biggest difference, though, is the disease’s negative connotation.
“You can talk about diabetes, you can talk about headaches,” Villarreal says. “But HIV still carries a very heavy stigma.”
“There is a lot of blaming the [infected] person,” adds Behforouz.
To be an accompagnateur, one must be willing to banish judgments and “meet the person where they are at.” This means accepting the chaotic lives of some clients — including drug use, domestic violence, mental illness, isolation and racism.
Of Villarreal and his colleagues, Behforouz says, “We select them for this work because of their incredible passion and compassion and their dedication to working with really, really challenging situations.”
Despite social and economic barriers, PACT has found ways to storm through to keep its clients’ health on track. In fact, it has been so successful that the model is being replicated in New York City and Miami. AIDS service organizations in South Carolina and Virginia and hospitals in Philadelphia and Baltimore have also shown interest.
However, this success hasn’t yet translated into overflowing coffers. PACT still lives grant-to-grant and relies strongly on private donors. Each year, Behforouz says, she crosses her fingers and hopes that donors have not grown weary of keeping PACT alive.
According to Behforouz, PACT is only fiscally stable through 2008, making the Medicaid reimbursement request all the more important.