STAMFORD, Conn. — The man with the cane who came to the clinic in 2003 was certain.
“I have it,” he said.
“What do you have, sir?” Ivette González recalled asking him.
“I have HIV,” he said.
But the man, white and in his late 40s, face drawn, had never been tested. He was too afraid, he told González, even though he insisted he had the disease.
“He said, ‘I know I have it. I feel it. For years, I’ve had sleepless nights. I don’t eat,’ ” González said. “He didn’t look good.”
The test result came as a surprise.
“Would you believe I tested him and he was negative?” González said.
“But that’s not the beauty of the story,” she said. “This man, when I gave him the negative result, his face changed. It was like I took years away from him. He looked like a different person. He said, ‘All these years I thought I was positive.’ And I said, ‘All you had to do was get tested.’ “
González is a prevention specialist with the Stamford Health Department’s HIV Prevention Program, launched 30 years ago as the HIV/AIDS crisis swept the nation.
Over the years, thousands of people have been tested through the program. Staff credit it with preventing the spread of the virus and contributing to a pronounced nationwide decline in new HIV cases.
Now, years past the epidemic that killed 450,000 people in the United States between 1981 and 2000, the city health department is rethinking how it can continue reaching vulnerable groups after the Board of Finance cut the HIV program from next year’s budget. Its last day is June 30.
Board members who voted for the cut argued that $500,000 — $300,000 from the city and $200,000 from a state grant — is too much to spend on a program that identified only two infected people in 2016. In recent years, the city has had to cover a greater percentage of the program’s cost as the state grant dwindled.
In fact, the number of new HIV cases diagnosed by the HIV Prevention Program has been low for years. In 2012, four of 561 people tested had the virus. In 2015, one in 535 tested positive.
The program’s numbers mirror the decline happening at the state and national levels. The state Department of Public Health’s HIV Surveillance Program reported 21,273 cases of the disease identified between 1981 to 2015, with only 7 percent diagnosed in the last five years.
In 1987, social worker Debra Katz was able to get the HIV Prevention Program off the ground with a $38,000 grant from the state health department.
“The whole idea of AIDS was so taboo at the time,” Katz said. “We were trying to get that stigma lifted. It was about a behavior, it wasn’t about who you were.”
In the program’s first decade, Katz experimented with how best to reach people from all walks of life about the immune system-attacking virus that starts off as HIV and, left untreated, progresses into AIDS and early death.
She and her staff visited parks, baseball fields, street corners, night clubs and underneath highway overpasses. They launched peer-to-peer and youth outreach programs, partnered with community agencies and started a needle exchange for drug users.
“So many people early on we weren’t identifying until they had been infected a long time, and once people were sick, it was hard for them to take advantage of the treatment. With education and prevention, we started to get people tested earlier, and that made a huge difference,” Katz said.
Harold White and Sergio DeJesus were the first street outreach workers Katz hired in the late ’80s. The men were recovering drug users and HIV positive.
“Because of their own lives and what they overcame, they were able to be so good at their work,” she said. “I can’t tell you how many people they brought in for HIV testing and how many lives they saved.”
The two outreach workers weren’t as lucky. White succumbed to AIDS in 1997. DeJesus died 10 years later at age 49. Katz gave the eulogies at their funerals. The men are remembered each year at the World AIDS Day Interfaith Service organized by the Stamford Health Department and Family Centers, a nonprofit social services agency.
White and DeJesus worked for the HIV Prevention Program when it was at its peak, employing 10 people, compared with three staffers now. Back then, the program was diagnosing 20 to 30 people a year with the virus. Meanwhile, thousands statewide were learning they were infected.
“The numbers have gone down and I think that’s attributable to decades of HIV prevention,” said Katz, who left the HIV Prevention Program in 2013 after 25 years as its director. “But I think we would be doing a disservice to sit here and say we’ve done our work. There is a new generation that could be caught into thinking this disease has gone away. No one wants to be living with HIV, no matter how good the treatment is. We can have all the treatment in the world, but the cure is still prevention.”
When Katz hired Mavina Moore Sr. as an outreach worker in 1998, she partnered the recent Manhattan transplant with DeJesus. The pair would canvass the streets of Stamford, handing out condoms and talking with people about safe sex practices.
“He pulled me in and showed me the ropes,” Moore said. “We would go under the bridge. People used to sleep under there and had their little homes there. At first it was scary to me, then I got used to it. You get to care about people, and that’s what we do. We care about people.”
Moore, who is also an elected city representative, became the HIV prevention supervisor less than three years ago, taking over for Katz’s replacement, Ellen Brezovsky.
With decades of work under their belts — they visit homeless shelters, community centers, social services agencies and office parks four days a week — Moore and her staff agree the hardest part of the job is delivering a positive result.
Moore recalled when a women in her early 20s, whose longtime partner had HIV, caught the disease after years of having unprotected sex. The couple’s son was 3, and unharmed by the virus, when the woman learned her status.
“It was very devastating for her,” Moore said. “She was very lucky for many years. She was in love with this guy and it didn’t matter that he had HIV.”
Deborah Arrieta, another of the program’s prevention specialists, remembers delivering her first positive result. It was at the Chester Addison Community Center about 10 years ago. The boy was 14. He was from Los Angeles and said he tried drugs once.
“I started crying,” Arrieta said. “I have two sons and I was thinking about my kids. He could be my kid.”
Three oral swabs confirmed the positive result. The boy later found out leukemia had caused a false positive, and he didn’t have the disease.
Still, Arrieta said, “(HIV) is like pregnancy. It can happen the first time.”
In place of the HIV Prevention Program, Stamford Coalition for AIDS Resources, Education and Services, a nonprofit that works closely with the city health department, will provide HIV testing to residents beginning July 1.
After the HIV program was cut from the budget, Stamford CARES reached an agreement with the state to use the remainder of the program’s grant to continue services through the end of the year. Run by Family Centers, Stamford CARES is where the HIV Prevention Program refers people for treatment when they test positive.
Staff are upset by the Board of Finance’s decision to cut the HIV program immediately, instead of funding it through the end of the grant.
“People see it as a job and a salary and they have to make budget cuts, but they don’t see what’s really behind it,” González said. “There are people who are afraid to get tested and I feel there’s still a shame to it.”
Moore is most concerned about the program’s nine needle exchange clients who are drug users. She said she doesn’t know where to send them.
Arrieta, who is bilingual, is concerned about the immigrant community, especially day laborers.
“The Hispanic community really needs this, but the city doesn’t understand that,” she said. “So many Spanish people come here and they don’t even have elementary school. They have to learn the basics.”
González’s crusade against HIV is personal.
“I’ve lost loved ones,” she said. “At the end of the day, I need to keep fighting this fight. There need to be passionate, empathetic counselors out there.”
Information from: The Advocate, http://www.stamfordadvocate.com