Keeping Pace in the Ever-Changing Fight Against AIDS

To serve the 2,057 people living with AIDS in Orange County and to reach the estimated 6,000 more living with the virus that causes the disease, local health agencies say they have to be as adaptable as the mutating disease itself.

Caseworkers and volunteers once primarily helped patients in the final stages of the illness cope with impending death. Now, thanks to potent new drug combinations such as protease inhibitors, they also help AIDS sufferers live longer and cope with the complexities of their lives.

As treatment becomes more sophisticated, so do the strategies designed to support those infected, service workers said.

“The road map has changed so dramatically here,” said Doug Weiss, executive director of the Gay and Lesbian Community Services Center of Orange County. “At the center, we sometimes have to change hourly. . . . We don’t know what services will be needed two years from now.”

In the early years of the epidemic, agencies primarily saw patients in the final death throes of disease. Now, they have clients who are infected with the virus but who could live for years. They want to know how to handle their benefits, when to keep working, what to tell employers and how to live with the long-term fear and stress that comes with terminal diseases.

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At the AIDS Services Foundation of Orange County, a new six-week course on “Navigating Your Future” was immediately filled by patients who quit work five or six years ago, expecting to die, but who responded to treatment and must again plan for their lives. “People have tremendous concerns,” said David Armendariz, director of communications and volunteer services. “They are feeling better and they want to work.”

The faces of those with the human immunodeficiency virus (HIV), which leads to acquired immune deficiency syndrome--known as AIDS--are also changing. Once considered a disease afflicting mostly gay white men, Orange County agencies are now as likely to see Latinos, blacks and Asian patients as well as women and heterosexual men.

Whites made up 80% of AIDS cases in Orange County in 1992; they now make up 55% of that population. Latinos made up 14% of the cases in 1992; they now make up 33%. Figures for blacks and Asians are also rising proportionately.

Weiss, who has been living with HIV for 10 years, said the treatments that prolong life are their own special torture. Scheduling alone can be a full-time job.

“I take 27 pills a day,” he said. “One of the pills has to be taken two times a day with no food and one has to be taken three times a day with food.”

The federal government now pays for the medication for people with full-blown AIDS, which can cost $15,000 per year or more. But patients require a host of other services to manage the regimen.

“Do you want to hand someone $15,000 for drugs and not give them psychological and social treatment?” Weiss asked.

“Now, we have a model for early intervention. It’s cheaper to get to them earlier. It’s cheaper to keep them well. It’s cheaper to keep them productive members of society.”

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Along with the psychological counseling and insurance information that keeps them in the work force, patients also need education and support in communities where AIDS is not often discussed.

“The degree of stigma related to the disease is a major obstacle for us,” said Luis Lopez, program coordinator of HIV programs for Santa Ana’s Delhi Community Center. With a staff of 10 and a long roster of volunteers, the center works to reach Latinos, the fastest-growing population becoming infected with HIV.

“We have to use a holistic approach in our intervention,” Lopez said. “We have to talk about a whole host of other issues to de-stigmatize it and put it in a health context.”

With the disease, its treatment, and the effect of the treatment becoming more complex, those who serve the patients are pooling their resources.

Three agencies--Laguna Shanti, Delhi, and Latino Psychological and Social Services--last month won a grant worth more than $800,000 to measure the effect of coordinated programs on those in the early and middle stages of HIV infection.

“Orange County has been preparing itself to meet the changing needs of people with HIV,” said Sarah Kasman, executive director the 10-year-old Laguna Shanti program.

“We speak to each other and there are referrals going back and forth.” she added. “In one agency there are food bank services; in another, home-delivered meals. They can utilize those services no matter where they are in Orange County.”