The founders of a new HIV support network in Palm Beach Gardens are focusing on a niche they say is under-served: people who have been living with the disease before the advent of effective therapy in the mid-1990s.
Before the drugs, a diagnosis was an almost-certain death sentence, and parents and partners threw their loved ones out on the street when they found out they were positive, HIV Long-Term Survivor Network Program Manager Chris Lacharite said.
HIV is still incurable, but a daily regimen of drugs can suppress the growth of the virus and prevent progression to AIDS. More than 8,000 people in Palm Beach County have HIV/AIDS, according to the Florida Department of Health.
An LGBT church in Palm Beach Gardens has launched the HIV Long-Term Survivor Network. People can enhance their self-care, learn to take care of themselves as they age and experience social activities that connect them with other people who are HIV-positive, Lacharite said.
Although it was started by the Metropolitan Community Church of the Palm Beaches, the network is not a religious or sectarian program, he said.
“This is a place of support,” he said. “We’re here for people who need us.”
Long-term survivors fall into three categories: those diagnosed before 1996 when highly active antiretroviral therapy became available, those who have been living with the disease for 10 years or more and people who aren’t HIV positive but have been in the trenches — caregivers and activists, Lacharite said.
A Smart Ride 10 percent Lifeline grant partly pays for the network. There are seven primary beneficiaries, but each year, 10 percent of the money raised from the 165-mile bike ride from Miami to Key West is set aside for other Florida agencies that provide HIV/AIDS-related services.
For its first event, the group’s participants organized a spaghetti dinner in Boynton Beach. There will be another dinner at Compass in Lake Worth in June and a pool party in Jupiter over Fourth of July.
Massage therapy, yoga and movement classes are in the works, Lacharite said.
Lacharite, 65, of Boynton Beach, started working in HIV nursing in 1985 at a large teaching hospital in Boston. He learned he was positive in 1998.
When he worked in nursing in Fort Lauderdale, he repeatedly heard from long-term survivors that “they didn’t feel like they fit in other support mechanisms in the community.”
Early antiretroviral drugs caused vomiting and other blood diseases. Now, long-term survivors are facing the usual signs of aging, along with the anxiety, depression, insomnia and self-stigmatizing thoughts that sometimes come with being HIV-positive, Lacharite said.
Eric Miller, of Lake Worth, said long-term survivors like him have substance abuse and mental health needs that need to be addressed.
Until now, there’s been a shortage of money for specific programs for long-term survivors, Miller, 51, said.
Then there are the medical issues.
“It’s constant. Every year there’s something new,” he said. “you don’t know if you’re going to be able to work. You don’t know what your financial status is going to be, if you’re going to be able to work enough to manage your bills.”
Long-term support networks are more common in larger cities such as New York and San Francisco, he said.
“It’s definitely a need and will make an important impact,” Miller said.
For more information:
Chris Lacharite: firstname.lastname@example.org