Searching the shadows to promote care

By Timothy Pratt

Friday, June 13, 2008 | 2 a.m.

The woman looked across an empty lot, then down at her notes.

It was the right address, but there was no house, just dirt.

She was trying to track down someone who had been diagnosed with HIV/AIDS but, as far as the Southern Nevada Health District could tell, had not gotten medical care in the past year.

The district had a list of 1,259 people like that in October when it assigned 20 employees to find them and draw them back into treatment. Experts say the project is unique in the nation.

The district’s would-be detectives began by mining databases. They checked lists of recently deceased people who had been receiving Social Security benefits. They searched voter registration lists, state prison inmate registers, local lab reports, other Health District data.

Sometimes the search led to three, four addresses. At that point, said Rick R. Reich, the Health District’s communicable disease and AIDS services supervisor, “it’s not a matter of making phone calls. It’s a matter of getting into streets and putting mileage on your car.” That part isn’t as simple as it might sound. When you do find a house or apartment where the person lives, there’s the possibility of outing someone with a disease he or she would prefer to keep secret.

So if you get no answer at the door, you slide a plain white card under it with a plain request: “Please contact me at your earliest convenience.” Two phone numbers are listed at the bottom. There’s nothing about HIV/AIDS. The agency isn’t named.

“We didn’t want anyone calling, saying, ‘What the hell are you doing?’ ” Reich explained.

Indeed, the project is so discreet that one of the best and brightest people involved won’t even say her name. She’s afraid it could get out and that might wind up scaring away the people she’s trying to reach.

The task is hard enough. Two of three times, the trail leads nowhere.

But in those precious few cases in which a person returns to medical care, not only is the patient better off, the community is too.

“People who are infected and out of care are more likely to infect other people,” said Judith B. Bradford, an expert on the disease and director of community health research at Virginia Commonwealth University.

Reich put it this way: Treating people with HIV/AIDS lowers “the viral load in the community,” decreasing “overall infectiousness.”

And so “the cost ... is less, if you’re on the preventive side, rather than treating emergencies,” he said.

Bradford and other experts say the project is an innovative solution to a problem facing those who work with HIV/AIDS nationwide: Even as treatment for the disease has markedly improved in the past decade, the epidemic has made deep inroads into groups with less access to health care — minorities, addicts, the mentally ill.

In Clark County, just less than half the diagnosed 8,388 HIV/AIDS cases are minorities. Two-thirds of the people the district’s project brought back into care are minorities.

“The disease has become one of more lower socioeconomic populations ... and there are more likely to be obstacles to care,” said Jeff Bailey, director of client services for the AIDS Project in Los Angeles, a 25-year-old agency.

Those who don’t seek care after being diagnosed with HIV/AIDS are disproportionately minorities, Bradford said. She said reasons for not getting help range from distrust of the health care system to what she called structural barriers, such as not having a car, for example.

Then there’s denial. “Some people don’t want to deal with it,” Reich said.

Or they’re afraid getting care will lead to someone’s discovering they are HIV-positive, which still carries a stigma.

Cost shouldn’t be an obstacle, Reich said — the Health District offers free or low-cost tests and medicine.

Bradford’s research on outreach to out-of-care HIV/AIDS patients at the Fenway Institute at Fenway Community Health in Boston found that finding and convincing the patients “was not as easy as was thought.”

This remains true even as treatments allow people with HIV/AIDS to live much longer than a decade ago.

That, of course, is one of the points Reich and his staff make whenever they talk to someone who has not been getting treatment.

The district’s team has found 426 people, or about one-third on its list, so far.

Of the 32 who agreed to seek care, one “was a young guy; he’d been diagnosed several years ago,” Reich said.

“After leaving messages, I went to his house. He didn’t answer. I left the card. He called as I was driving away. Then I met with him. He said he had never felt sick ... but then he realized time was drawing near for his immune system to be affected. Now he’s in care.”

As for those who haven’t been reached, the effort continues. So far the project has cost about $800,000 in federal funds. Reich plans to have the whole process — database mining, door-knocking, follow-up casework — become part of his staff’s ongoing duties, meaning he hopes grants aren’t the only way he can continue the work.

Having someone who cares about a person getting well is the heart of the project, he said.

“A lot of times, people just need someone to talk to who’s outside their daily life.”