May 15, 2007
By SUSAN CAMPBELL, Courant Staff Writer
For Luis and Lydia Ortiz, HIV is their shared memento of Luis' long-past days as a heroin addict. Both were diagnosed in the early 1990s.
They manage their disease, but their daily medications - they count roughly 35 pills between them - can have side effects. Three years ago, Luis Ortiz had a stroke that has affected his walking. Though he trained to be a carpenter, the 57-year-old cannot use his right hand. He is also battling pneumonia. Besides HIV, Lydia Ortiz, 56, manages her diabetes with medication and takes medicine for depression. Food stamps keep some groceries in the house. An adult nephew lives with them and helps out as well.
The Ortizes are among the most precarious of Hartford's vulnerable HIV/AIDS population, and their lives could easily get more complicated. Earlier this year, a change in how funds are distributed resulted in Hartford and New Haven receiving about half the money expected by organizations that work with people with HIV/AIDS. The cuts decimated some programs and greatly reduced others, and program officials are especially concerned about the effects of the cuts on non-English speaking clients, whose hold on their own medical care is more tenuous. Yvette Bello, Latino Community Services executive director, calls the cuts "devastating." She said a waiting list of clients is rapidly forming.
At that 21-year-old program, home care that provided companionship and respite for caregivers is gone. Transportation formerly offered to clients is now extremely limited. (The Ortizes walk all over Hartford, but the stroke has slowed Luis, and they did sometimes rely on rides.) Without transportation, people miss much-needed medical appointments. Some people who struggle with addictions are not able to get to their support groups, and some are relapsing. And all-important Spanish-speaking translators are all but gone, said clinician Barbarita Pieve.
Luis Ortiz's English is good, and he accompanies Lydia to her appointments. He asks for help from medical staff if he hears a word he can't translate. Lydia Ortiz understands English, but she is nervous about speaking it. And that is the biggest hurdle for some, understanding crucial information at medical appointments, said Pieve.
"They come back and I have to be calling some of their doctors trying to get more information," she said. "If they don't bring someone with them, they can't communicate."
But a system that relies on casual interpreters - friends or family members - is ineffective, said Pieve. Most English-speaking friends or family can't miss work to accompany their loved one to medical appointments, she said. One of her clients, unable to speak English, was given a psychiatric evaluation by a psychiatrist who doesn't speak Spanish. Pieve called back and asked for a new evaluation. Because the client didn't understand the questions he was asked, he'd simply answered "No" to all of them, she said, and so the diagnosis was incorrect.
Pieve knows how such cuts appear to people who believe they aren't affected by HIV or AIDS. She can recite the litany of things she hears when people want to dismiss the population she serves: "Who told them to get high. Why the hell did they get HIV. That's their problem."
But, said Pieve, "it's everybody's problem. Everybody's being affected. Crime could increase. It's going to affect your neighborhood as well."
Organizations like the Mid-Fairfield AIDS Project lost a chunk of its funding, $160,000 out of $700,000. "This is after 10 years of successfully running programs for [the state Department of Public Health] and taking care of the HIV/AIDS population in the greater Norwalk area," said Stuart Lane, executive director. Without funding, Lane said about 200 people living with HIV/AIDS in his area "have no where to turn to for support or, more important, for medical care and medication which could mean death for some. We are shocked and dismayed."
He has been told his organization may get a portion of the money in future grants, but not nearly enough to keep former programs running.
Meanwhile, the hallway is getting crowded at Latino Community Services. If you'd visited in February, before the cuts, said Pieve, you would have seen people getting their needs met. "Right now," she said, "they are just grabbing whatever they can to survive."
The Ortizes attend a support group here three times a week. Today, Pieve will lead it, but prior to the meeting, Pieve is running up and down the stairs with bags of groceries for needy clients, and she's making quick phone calls that once were made by an assistant - gone from the cuts. More federal funding is supposed to be announced this week - perhaps today - but much-needed programs have closed and starting them up again will take time. Shawn Lang, public policy director at Connecticut AIDS Resource Coalition, said Connecticut's Washington delegation signed letters recently to urge the federal government to restore funds, and they wrote to Gov. M. Jodi Rell to ask the state to help. While their support bodes well for future funding, Lang said too many programs affecting too many people are already gone and won't be reinstated.
"No matter how favorable, it's still not going to make up for the loss," said Lang. "So we're still going to be way behind from where we were."
Bello agrees; the budget process takes time.
"That's where it's a crap shoot," Bello said. "We may not be fully funding everything we had before. Programs that were cut could continue to be cut. I am optimistic, but at the same time I can't operate an agency on optimism."
The Ortizes do fairly well, Pieve said, compared to other clients who face losing their housing. The Ortizes are in a rent-subsidized apartment. Without such support, other clients will have to find work, but some are too sick, some have criminal records, and some don't speak enough English to be hired.
"You see people getting depressed," said Pieve, who has worked with the population for 25 years. "It's really hard to see people like this. It's overwhelming at times."
Originally, Luis Ortiz came to the States for an education, he said, but at 16 he found heroin and he lost what he calls "my primary push." He returned to Puerto Rico, met Lydia, and they opened a small food stall there selling mostly lunches, Lydia waiting on customers, Luiz working the kitchen. As their disease progressed, they came to the States to take advantage of the medical services. Now, standing in Community Services lobby waiting for their support group to begin, she describes him thus: He is a fighter, a luchador. And he is very sensitive, muy sensible.
Reprinted with permission of the Hartford Courant.
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