Community health workers help HIV patient change attitude, life
The man holds a dozen pills in his hand. Three blue-and-white capsules, a pink pill, an orange tablet, round and oval ones, large and small — all go down with a single gulp of water. The different medications treat HIV, hepatitis, high blood pressure, and kidney problems.
“I can’t take them one by one. That takes too long,” said Kenya Jackson, 53, of Roxbury.
Diagnosed with HIV in 1999 and homeless for many years, Jackson now has a place to live and places to be. With encouragement and help from community health workers, he receives dialysis at Lemuel Shattuck Hospital three times a week, keeps doctor’s appointments at Boston Medical Center, and reluctantly saw a dentist last week through the Boston Health Care for the Homeless Program.
Jackson is one of about 80 HIV patients in Greater Boston who participate in a program called Prevention and Access to Care and Treatment, run by the local nonprofit Partners in Health that is better known for its global health work. Trained community health workers meet Jackson each day to watch him take his pills, accompany him to medical appointments, and troubleshoot the socioeconomic problems that have compounded his health issues. Established in 1997, the program helps patients who have failed to thrive, despite their doctors’ best efforts and available life-saving medications.
Programs like PACT generated a wave of excitement last month at the 2012 International AIDS Conference in Washington, D.C. Researchers reported that community health workers contributed to significant public health gains in developing countries such as Rwanda, South Africa, and India. Especially in rural areas that lack doctors, workers in these countries make house calls to check on patients, look for people who are becoming sick and need HIV treatment, or provide health education.
In Boston, despite its abundance of physicians, HIV patients may not always take advantage of the care available. “Almost all of the people who are referred to us are people of color, are poor, and often have a lot of psychosocial issues,” said PACT founder Dr. Heidi Behforouz. “We’re not supplanting the medical services they’re getting. We’re basically enhancing or complementing them.”
Massachusetts has seen sharp declines in new HIV cases — a 45 percent reduction between 2000 and 2009, according to Kevin Cranston, director of the state infectious disease bureau — even as infection rates are flat or rising in most other states. Still, many patients such as Jackson fail to manage their disease as they focus on more immediate needs: finding shelter, food, and in some cases, feeding an addiction to drugs or alcohol.
In Boston, PACT and another community health worker program at Fenway Institute are looking to expand their reach to different patient populations, including people at risk of acquiring HIV and patients with other chronic diseases.
The six community health workers at PACT are not professional doctors, nurses, or therapists. Instead, they are trained to motivate, guide, and offer practical solutions for patients to take good care of themselves. A 2009 analysis of Medicaid bills found that inpatient hospital expenditures for patients enrolled in PACT fell by 62 percent while their use of outpatient and pharmacy services increased.
“Traditionally, patients will come in every month or two months or three months. What goes on the whole rest of the time is kind of a black box,” said Dr. Mark Eisenberg, an HIV doctor at the MGH Charlestown HealthCare Center, who refers 1 in about 10 of his patients to PACT. Community health workers can help address homelessness, mental health issues, and substance abuse that derail some of his patients between doctor’s visits, said Eisenberg.
A social worker steered Jackson to PACT. A year ago, he was squatting in an abandoned house in Dorchester, living without hot water, and daisy-chaining all his appliances to a single electrical outlet.
Depressed over his HIV diagnosis and squalid living conditions, Jackson failed to take his antiretroviral drugs regularly. The pills started piling up each month when Jackson would receive a new batch of medicine. “I was opening the ones I had in the beginning and flushing them down the toilet,” he said.
Jackson lied to his doctors about taking the drugs, but the truth was clear to everyone. He was dropping weight quickly and rotating in and out of emergency rooms.
“When we first met, he was very pessimistic about whether or not I would be able to be of any service to him and most of all whether I would be in the long term here for him,” said Gregory Jules, one of two community health workers assigned to Jackson.
But the daily social support — a missing link for many PACT patients — eventually inspired Jackson to focus on fighting HIV, and to kick his crack cocaine and alcohol habits.
“I had to start straightening up because now I’ve got them in my corner,” said Jackson. “I got to show them I can do this.”
Jackson told PACT workers something he never shared with his doctors — that he found the pill bottles too embarrassing and cumbersome to carry around to homeless shelters and food pantries.
PACT worked with doctors to package his pills in single-dose blister packs that he could carry discreetly in his pocket. The packs also saved Jackson from having to read the fine print on multiple bottles to assemble his daily doses — a time-consuming and error-prone process.
Jackson started taking his medications more regularly, and within two months, blood tests showed that he was beginning to lower his HIV infection levels for the first time in years.
When Jackson was evicted from the abandoned house, Jules and another community health worker encouraged him to move to a shelter, where he could qualify to apply for low-income housing.
About a month ago, on what Jackson called the happiest day of his life, he became the proud renter of his own room on Massachusetts Avenue.
“You did all the legwork,” Jules told Jackson at a recent dialysis appointment. “I’m just a support.”
In time, Jackson knows that Jules — whom he affectionately calls his “brother from another mother” — will fade from his life. PACT organizers try to wean their clients off the program after 1½ to 2 years. The services cost about $6,000 per year per patient, funded by the state, private donors, and foundations.
For now, Jackson is focused on continuing his progress. At 124 pounds, he is still filling out his 5-foot-8-inch frame, but Jules said he has come a long way in the past year. The virus particles are virtually undetectable in Jackson’s blood. At checkups, he eagerly awaits to hear his immune-cell counts, and he is impatient to raise them higher.
Now that housing is not a daily, pressing issue, Jackson can catch up on other needs he has put off, including long-overdue dental work.
Jackson celebrated his 53d birthday last Monday, devouring a cupcake in the parking lot of Shattuck Hospital after dialysis treatment.
“We hope to add another 10 years on top of that,” Jules said, smiling warmly.
“Let’s add another 53 on top of that!” said Jackson.