With the nature of the AIDS epidemic changing, agencies in Orange County have altered their services for clients with a different set of needs.
Both the larger local agency, AIDS Services Foundation Orange County, and the smaller, Laguna Shanti, say they are busier than ever--albeit with a different focus than just a few years ago.
Then, they were in the death management business, providing nursing, comfort and advocacy for clients whose decline was inexorable and often brutal.
Officials say 2,800 people in Orange County have died from AIDS-related diseases.
But with the success of new protease inhibitor drugs that can in some cases fend off deadly complications of the virus, agencies have turned their focus to the ups and downs of living with an incurable condition.
“We’re a very different agency than we were just a few years ago,” said Lisa Toghia, volunteer and event coordinator for Laguna Shanti in Laguna Beach.
Budgets at the two Orange County service providers have, however, remained stable--or are improving, both groups say.
By contrast, AIDS Project Los Angeles recently announced its headquarters is for sale. Its annual budget is down by about one-third and the agency is rethinking the way it operates.
Partly, that’s because of the good news that the nation’s death rate from AIDS-related complications has plummeted. The death rate in Orange County, for example, fell 64% in the first half of 1997, compared with the same period in 1996, according to the Orange County AIDS Surveillance and Monitoring Program.
Even though the new treatments are not a cure for the malady, their effectiveness has made raising money more difficult.
“When you look at the major organizations in New York and Los Angeles, donations have declined 20% to 25%,” said David Armendariz of AIDS Services Foundation Orange County in Irvine.
There has been no drop-off in Orange County, which has an estimated HIV-positive population of 6,400.
“It’s been an amazing thing,” Armendariz said. “We have a very committed donor base.”
Because Orange County is smaller than cities such as Los Angeles and New York, “we’ve been better able to stay in touch with the communities affected with HIV.”
And adapt faster too, said Sarah Kasman, executive director of Laguna Shanti. “Some of the larger agencies have been slow to change.”
Change can mean anything from reducing the number of expensive hospice nurses, because patients feel better longer, to closing satellite offices, because clients are more mobile and can make the trip easily to central offices.
The drop in the death rate means caseloads have expanded--clients are staying alive and thus remaining clients longer--but now people drop in and out of services as their condition warrants rather than using them constantly.
Service providers say the new drug combinations have spawned treatment issues of their own that require periodic counseling and support.
“People lost all hope,” Armendariz said. “New avenues of treatment arrive and people have new hope. They are thinking about their future. Then, all of a sudden, they lose their future again. These treatments have yet to cure.”
“We’re seeing more of a yo-yo effect,” Kasman said.
Armendariz said his agency now counsels AIDS patients who have been out of the work force for many years. They may now feel well enough to do something--but can’t afford to lose public medical benefits and can’t figure out how to fill in the gaps on their resumes.
Another change: Volunteer “buddies” once automatically became death watch hospice visitors; now they are someone to touch base with as issues arise from time to time, Toghia said.
One of the biggest shifts has been in the patient population itself. Once almost exclusively the province of gay men and intravenous drug users, AIDS is spreading in the Latino and African American communities. Now there are support groups for women and heterosexuals and sessions conducted in Spanish.
Of necessity, the agencies now offer medical education to guide clients through the complexities of treating AIDS. The dizzying regimen can include 20 to 40 pills a day that must be taken according to a strict schedule. They often cause profound side effects.
Kasman says some patients eventually decide to stop treatment and let the disease run its inevitable course, a reminder, she said, that a temporary reprieve from death is not a pardon.
“We’re definitely concerned the general public thinks [the epidemic] is over and AIDS is no different than diabetes,” Kasman said. “But the ‘career’ of AIDS can span a long time.”