Darren Wells was 30 when he found out he had HIV. He’d just come out of a monogamous relationship and had been tested prior to that; he had no reason to believe he was infected.
But he was – in fact, he’d developed full-blown AIDS. He was diagnosed after collapsing at The Miriam Hospital while waiting to have an ulcer checked out. He was admitted immediately with pneumonia and wasting. Still, it took him a couple of days to even let himself be tested. When the results came back, he figured he wouldn’t see his 31st birthday.
Next May, he’ll be turning 40, and he very much expects to be not just alive, but healthy, with the virus kept in check through careful medication and monitoring.
Wells, a social work student and coordinator of the AIDS Project Rhode Island speakers bureau, is one of about 1,200 patients of the Immunology Center at The Miriam, the largest HIV/AIDS treatment site in the state and a major research hub as well.
Founded by Dr. Charles C.J. Carpenter, an internationally respected researcher and clinician, the center combines in-the-trenches patient care – including treatment of prison inmates, drug addicts, the very poor, and immigrants – with cutting-edge research and innovation.
The clinic’s 14 physicians include several world-class experts, from Carpenter, to vaccine researcher Dr. Kenneth Mayer to the center’s director, Dr. Susan Cu-Uvin, an ob/gyn who has not only enabled scores of HIV-infected women to safely give birth, but also recently established the first-ever menopause clinic for HIV-positive women.
Miriam is also home to the Lifespan/Tufts/Brown Center for AIDS Research, and many clinic patients are enrolled in a major Centers for Disease Control and Prevention project, the Study to Understand the Natural History of HIV/AIDS in the Era of Effective Therapy (SUN Study), for which Miriam is one of five sites nationwide.
Wells didn’t know this when he collapsed in the hospital nine years ago, but looking back, he credits the doctors’ expertise with saving his life.
“Statistically, where I was in the infection when I was diagnosed, my odds were maybe 50-50,” he said. “If I had been in less capable hands, I might not have made it.”
And not only are the doctors top-notch, he said – the whole team also sees patients as full people, not just HIV/AIDS cases, and makes them feel in control of their health.
“I’ve never been made to feel dirty,” he said. “I’ve always felt a high level of respect from everybody, and I really appreciate it.”
The prospects for HIV and AIDS patients have improved dramatically in the last two decades. Once a virtual death sentence – and a brutal one – AIDS is now containable, seemingly indefinitely, through medication, and drugs can keep HIV-positive people from developing AIDS at all. The medications have also gotten better, and today, people with HIV can take a single pill a day, the drug Atripla, to stay healthy.
With all this, HIV and AIDS-related mortality has plummeted. While in the early 1990s, 100 to almost 200 people died from HIV and AIDS-related causes each year in Rhode Island, by 2005, only 23 deaths were attributed to HIV. The number of people living with AIDS, meanwhile, rose from 203 in 1993 to 1,467 in 2006.
The median time since HIV infection for the Miriam patients is about 12 years, Carpenter said, and he has some who’ve been with him for 16 years. Someone diagnosed now, he added, “if they take their medication, they can probably have a pretty normal lifespan.”
The problem, Carpenter and others say, is that people aren’t getting tested enough, especially women. The CDC reported this summer that 40.4 percent of the U.S. adult population – 71.5 million people – has never been tested for HIV, and only 17.8 million people, or 10.4 percent of adults, got tested in 2006. And like Wells, too many people are tested too late: In 2005, 38 percent of AIDS diagnoses came within a year of an HIV positive test.
Yet even with a large share of new patients arriving sick, Carpenter said, almost all AIDS complications are reversible, except brain damage. So the biggest challenge the clinic is facing these days is the question at the core of the SUN Study: figuring out how HIV and AIDS will affect people in the long term, and treating these patients into old age.
“Years ago, we were just struggling with keeping our patients alive from HIV,” said Cu-Uvin. “Now HIV is not our main problem, but we’re still struggling to keep them having a good life because of all the other medical problems that are arising as they grow older.”
The Immunology Center is particularly well-suited to deal with these issues because, unlike many HIV/AIDS clinics nationwide, it offers comprehensive medical care and serves as its patients’ primary care provider, managing everything from heart disease, to diabetes, to women’s routine needs, to pregnancies – but with an added HIV expertise.
In this dual role, the doctors can easily help patients tell the difference between routine health problems and HIV-related issues, and they can look out for issues for which the patients are at high risk, such as renal failure and hepatitis B and C.
The clinic also goes beyond medicine. There’s a full-time social worker, Heather Ross, who handles all intakes and also ensures patients don’t fall through the cracks, and another staffer who helps them with insurance issues and connects them with programs to cover the cost of treatment, if needed.
The clinic and its doctors’ research programs also support other providers in the region who treat HIV/AIDS patients. The doctors care directly for Rhode Island Hospital, Thundermist Health Center and STARR patients and prison inmates, which combined with the clinic means they treat about 75 percent of HIV patients, Cu-Uvin said.
Paul Loberti, manager for HIV/AIDS at the R.I. Department of Health, said he “can’t speak highly enough” of the Miriam team and of its role in ensuring that Rhode Island has a “seamless,” very high-quality system to care for people with HIV and AIDS. •
