Harlem United CEO Patrick McGovern and Program Coordinator Jennifer Rodriguez (Photo by: Sam Petulla)

Mary sits calmly. Her jeans are clean and well-made, her hands compact — never fidgeting — and she’s telling anecdotes about all the men she’s dated. She has lots of advice for what to look for in a man, and she can tell you how to leave a man and confidently move on, independently, for yourself. The night before, she broke up with her boyfriend. She’s alert, can take a joke, and holds her ground, and she has lived with HIV for 16 years.

Mary, just by appearances, could be misperceived as uninfected. She goes shopping, meets friends for lunch — she’s even about to go to a recently opened “HIV Only” club downtown, where she can dance and meet other singles. “I haven’t experienced the things people experience,” she says. “I have never been to a hospital.”

She lives in Harlem, a neighborhood sometimes called the United States’ HIV/AIDS epicenter and bellwether. Local HIV/AIDS organizations constantly scramble to anticipate trends and statistics. In the ’90s, the focus was on needle-users and the MSM (men who have sex with men) community. Then there were the rumors. Sixteen years ago, when Mary became infected, she “thought that only gays could get it,” she said. Even today, some residents uptown believe HIV can be transmitted through doorknobs and house flies.

As HIV’s reputation has changed from an unknown virus to a treatable medical condition, Harlem United, Harlem’s leading HIV/AIDS organization, has radically revamped how it fights HIV. In the last two years, instead of targeting groups – even those experiencing startling rises in new infections — Harlem United has taken a more encompassing approach that could reach the whole community.

Harlem United maintains an extensive network. It runs two clinics and multiple housing facilities, and partners with smaller organizations focused more on local populations’ needs. It offers services from art therapy to health care for the homeless and runs the only entirely bilingual Spanish HIV/AIDS clinic in the United States.

In the last few years, HIV has spread in Harlem in various, often troubling, directions. In 2006, the average Harlem resident was six times more likely to receive a new HIV diagnosis than an average American, according to statistics released in 2008 by the Centers for Disease Control and Prevention. Most new infections were among Harlem’s Latinos, who were more than 12 times as likely to receive new HIV diagnoses than other New York City Latinos. In fact, “over the past five years, new HIV infections, and concurrent HIV/AIDS diagnoses have fallen among all race categories, except for Hispanic women,” according to New York City Department of Health evaluation coordinator Chris Williams, commenting on the 2006 statistics.  Health professionals believe that trends like these will eventually spread countrywide.

Harlem United, carefully monitoring the CDC and the NYC health department statistics and compiling its own, decided to retain its existing Latino support and testing programs, rather than launch new ones.

Instead, its Blocks Project, begun in January 2008, sets a broader goal of testing everyone in the area — from women discouraged by a partner to the unsuspecting elderly. For the organization, it’s a new way of thinking about HIV/AIDS testing.

Soraya Elcock, Harlem United’s vice president for policy and public affairs, sits in her office, surrounded by mementos from 20 years in HIV/AIDS work and explains the shift.

Although organizations have changed, one thing hasn’t. People still contract HIV in the same ways: through risky sex, intravenous drug use, or long-term partners who become infected.

“It’s not about whether you’re at risk. What is needed is a neighborhood taking care of its basic health,” Elcock says. Unlike programs that target specific groups, she explains the blocks project treats HIV as a basic community health problem, along with hepatitis C, diabetes and hypertension. That means it’s a treated as a disease no more spectacular than any other and no more applicable to one group than another. Women in particular, “respond to something targeting to a larger community health awareness,” Elcock says.

“You have to create a hothouse effect — or you miss all the small groups,” she explains. Targeting a group — like Latinos or small African immigrant populations — tells a sub-community: There’s a problem among people like you. That breeds fear, Elcock says, which can discourage testing by making people clam up in denial or driving them to disregard the risk.

In taking this approach, the Blocks Project also targets an elusive but crucial body of people: infected people unaware they carry HIV.  Harlem United consider them the most hazardous group.  Last year the rate of HIV transmissions originating from people unaware of their infection was 54 to 70 percent, Elcock points out.

“A lot of them don’t believe they are at risk,” she says. As a result, merely encouraging people to be tested for HIV has had limited success. But Harlem United says the Blocks Project, with its enlarged approach, led to 75 percent more testing its first year.

Since kicking off the Blocks Project’s 2008, it has gone through continual revision based on what has worked and hasn’t.

Jennifer Rodriguez, a Harlem United community outreach coordinator, explained that at first, “Harlem United would have meetings with tenant association presidents. We ask them what would be the best way,” she says. Then Harlem United’s outreach staff would head out to the large buildings in teams. “We would have messages that we would put on every door,” Rodriguez says. “They might say Tuesday or Thursday come to this corner,” where testing vans would be available.

But, “the whole ‘come-to-my-van’ approach doesn’t work,” Rodriguez says.  So this year’s strategies were totally different. “In the last month or two we started getting a more intense outreach focus. We’ll have a five-minute conversation like, ‘Oh, why won’t you use a condom?’” she says. “Now it’s not so concerned with tenants. It’s more zones. It’s wider.”

As Mary sits and talks about her experiences with relationships, she suggests that even as more effective HIV treatments have become widely available, the old rumors and stigmas about HIV still pervade uptown.  Although she feels well, facing the disease’s stigma can be the hardest part. She describes an incident she had one night at a bingo game, when she overheard some players talking.

“The older ladies would gather and say, ‘I don’t want him to get HIV out there,’” she says, referring to married women whose husbands may be having affairs. “I used to go out there and say: This could happen to anybody. Because you don’t know what your husband does when he walks out that door.”

Nurys Escano helps uptowners apply for subsidized health care. (Photo by Tim Kiladze)

Stationed in the Boriken Neighborhood Health Center in East Harlem, Nurys Escano meets with patients who need to see a doctor but have no health insurance. She works for Healthfirst, an HMO; other representatives at the clinic work for MetroPlus, Neighborhood Health Providers, and WellCare.

Escano has heard every possible reason that patients remain uninsured: worries that children will be taken away, confusion about how much income they can earn, fears of deportation.

Such stories are common in low-income neighborhoods like upper Manhattan. Last year, 14.4 percent of New York City’s population was uninsured, according to the Census Bureau. Yet many of these people qualify for subsidized insurance. Unaware of their options, they never apply.

The Bloomberg administration targeted this group shortly after the mayor took office in 2002. “We’ve created numerous opportunities so that anyone who could be eligible can at least explore their health insurance options,” said Barbara Brancaccio of New York City’s Human Resources Administration. The city developed a new web-based tool allowing residents to shop for and compare insurance plans, for example.

Still, about 1.2 million New Yorkers remain uninsured. Nationally, the disparities are glaring: 28 percent of Latinos are uninsured compared to 17 percent of the total population, according to the Pew Research Center.

Boriken does its part to help: its doctors see anybody who enters, regardless of coverage, but people who are uninsured must sit down with Escano or another HMO representative to go over subsidized options, often applying for insurance on the spot. Escano first assesses whether patients qualify for Medicaid; most don’t because the required incomes levels are so low. Of those she helps apply for private insurance, eight of 10 are approved for subsidies or free care, she reported.

“If they become eligible, usually the insurance company will go back 30 days and pay for the clinic visit,” added Elizabeth Sanchez, the Center’s executive director. Those who make too much money to qualify but not enough to afford private insurance pay for their care on a sliding fee scale, as little as $30 or $60 a visit.

Patients often simply don’t know about their subsidized options, Sanchez said. “Newspapers and the political leaders put the information out there,” she explained, “but very few people in this community read or speak English.” Even when brochures and flyers are available in Spanish, “it’s not the day to day usage that the client may use.”

Sanchez also stressed the community’s workload. “The last thing on their minds is health care,” she said. Many residents are single mothers and “their first priority usually is taking care of their children and putting bread on the table.”

Elizabeth Sanchez runs the Boriken Neighborhood Health Center in East Harlem. Her clinic sees all patients, including those with no insurance. (Photo by Tim Kiladze)

Andy Nieto, director of community health at New York-Presbyterian Hospital, also works with low income people who often qualify for subsidized care: upper Manhattan’s taxi drivers.

For the past five years, his hospital has sponsored a drivers’ health fair that provides free screenings for glaucoma, prostate cancer, hypertension, and diabetes.

Taxi driver Juan Payano visited this year’s health fair on a crystal clear fall day. A native of the Dominican Republic, he was uninsured, and had spent 13 hours in the emergency room earlier this year because he was feeling sick. The hospital ran tests but found a simple virus – a costly expense the hospital absorbed.

It’s difficult for fellow drivers to afford coverage, Payano said. “We are self-employed. It’s hard for us to buy insurance.” Besides, Payano added, arriving immigrants are often confused about insurance options. “You’re kind of lost. The doctors are expensive. It’s complicated,” he said.

Instead of trying to work through the system here, “sometimes when people go home, they check their teeth and their health because it’s less expensive.” But that doesn’t help if they get sick when they return.

Nieto added lack of time to Payano’s list. “These guys work six to seven days a week, so often these guys don’t have time to take care of their health care until it’s too late,” he said.

Nieto also runs a spring health fair for bodega owners, a group that faces similar barriers to health care. HMO’s offering subsidized care are invited to both events – Healthfirst showed up for the taxi drivers’ fair – to promote affordable insurance plans.

But even those who apply and get coverage may forget to re-certify each year. “Some patients are just irresponsible,” said Dr. Danielle Milano, who works at Boriken. She added that the HMOs’ mailed documents don’t always reach low-income patients, who move quite often.

Payano is a prime example. He previously applied for insurance but moved before finding out if he was approved. He was, but the documents were mailed to the wrong address. Too busy to follow up, he has had to re-apply and is awaiting a decision – but the stakes are now higher, because his wife and daughter finally joined him in New York last month.

Milano was sympathetic, acknowledging that poverty creates uncertainty. “Today they have a phone, tomorrow they don’t,” she said.