Rise in O.C. AIDS Cases Takes Toll on Survivors : Support groups: Cumulative effect of losses, funding squabble and ever-growing needs overwhelm activists.

By LESLIE EARNEST and KEVIN JOHNSON

Aug. 23, 1992 12 AM PT

TIMES STAFF WRITERS

Tim Miller’s voice grows indignant when he thinks about the times desperately ill people--all of them ravaged by AIDS--appeared on the doorstep of his Garden Grove AIDS center.

Typically, they arrived either ignorant of the multitude of services available to them or had just emerged from denial of the disease that would soon kill them.

For the past decade, Miller and other AIDS activists in Orange County have raced to expand services and treatments to meet the fast-growing and changing needs created by the dread disease. In recent months, however, local activists say the number of AIDS cases has simply outstripped the community’s ability to respond.

Even though the federal government is expected to pump an estimated $1.3 million in AIDS funding to Orange County next year--$850,000 more than in 1992--community officials say much of it will probably go to fill holes created by anticipated cuts in state funding. Whatever is left over does not figure to be enough, and the result could be a fierce scramble for survival among local service groups.

“It has gotten to the point where I’m wondering whether we should be encouraging people to come in when we know the treatment that’s going to be provided is not adequate anyway,” Miller said.

Doug Barton, a County Health Care Agency division manager, said the additional federal funds will help, but “the needs are far in excess of what impact this (money) will have.”

Much of the focus of the disease has been centered on Laguna Beach, where AIDS maintains its highest local per-capita rate and where a recent financial crisis had threatened to close the city’s cornerstone of AIDS care, Laguna Shanti. But the most recent county health report released in June shows the number of AIDS cases increasing in Santa Ana, Garden Grove and Anaheim.

At the county’s largest service center, the AIDS Service Foundation in Irvine, Executive Director Priscilla B. Munro said funding has remained level while the caseload has increased by 40% since last year.

Perhaps the most startling numbers appear in the recent monthly reports prepared by the county’s Health Care Agency. The reports show that AIDS claimed 54 lives during the month of May alone, a 184% increase from the same period last year. The study also found that the number of cases reported during the first six months of this year is likely to surpass last year’s record total of 463 cases.

The future looks even more bleak with a county death toll projected to reach 7,000 by the year 2000, according to county officials. As many as 15,000 Orange County residents are now thought to be carrying the AIDS virus, the officials said.

Not only is there an overall lack of public and private money to fund additional services, but the once-enthusiastic army of professional volunteers has also grown weary and the ranks depleted.

“We’re 10 years into this epidemic, and some of us are tired,” Miller said. “We’re witnessing here the collapse of medicine in the U.S.”

Barton said that in many ways, Orange County’s battle with AIDS reflects the problems that are afflicting health care services throughout the state.

Yet unlike other killer diseases such as cancer, AIDS in Orange County continues to carry longstanding stigmas that often limit financial or volunteer support needed to keep essential programs running.

Don Francis, the federal Centers for Disease Control’s former adviser to California, said Orange County lost valuable ground during the initial stages of the local AIDS crisis because of strong political opposition.

For years, he said, local health care officials vying for funding have had to chart courses around a conservative congressional delegation.

Those involved in the early battles recall with searing detail how the fear of AIDS first struck their lives.

Laguna Beach Mayor Robert F. Gentry remembers the 1983 death of the manager of the Boom Boom Room, a gay bar in Laguna. At the manager’s memorial service in Newport Beach, mourners appeared wearing surgical masks.

“It just boggled my mind, I didn’t know what to think,” said Gentry, who has since lost a lover and dozens of friends to the disease. “It was just so overpowering to see people looking like the plague had hit.”

Stories like Gentry’s reverberate across Orange County. And with the tales of death come stories of how gays rallied and then how the larger community pitched in, creating service centers, sometimes one from within another.

The battle against AIDS in the county began at the Gay and Lesbian Community Center in Garden Grove in the spring of 1983, those who were there recall. Since the center was small, support groups began meeting in homes around Orange County, said Randy Pesqueira, an early volunteer at the center.

At a “death and dying” group meeting of seven men with AIDS, Pesqueira got his initial look at a disease that would eventually claim about 150 of his friends. Among the small group was a particularly skinny man with the purplish lesions of Kaposi’s sarcoma covering his face.

“I just remember walking in and seeing him,” Pesqueira said. “I just said, ‘Gawd.’ You do that thing where your whole body just moves back and you don’t understand.”

The couple who had offered their home for that meeting did not offer it again, he said.

About that same time, the center’s executive director got word that an AIDS patient had been admitted to a local hospital. Niles Merton, now publisher of the Advocate, a national gay news magazine, went with a friend to visit the patient. His hair and fingernails had grown long, Merton said, and hospital workers left his food outside the door.

“We went back to the center and, to be frank, cried,” he said.

Such fear and sadness helped launch the AIDS Response Program in Garden Grove now headed by Miller, the oldest such support group in the county. Needing money to get ARP off the ground, Merton and Pesqueira met one summer night in 1983 in Merton’s living room.

“I’ll never forget it because the two of us were up till 3 or 4 in the morning,” Merton said. “We raced off (to the post office) as dawn broke to wait for it to open to get this Express Mail to the state. To Randy and me, we didn’t realize we were making history then, but it was that important to us.”

Even then, competition for available funds was keen. Merton said they were awarded a state grant of about $25,000 for AIDS education, beating a separate bid submitted by the county’s Health Care Agency.

Since those lean years, more than $7 million from private and government sources is now funneled each year toward the local fight, with a bulk of the services provided by the county and three community service groups: AIDS Services Foundation in Irvine, AIDS Response Program in Garden Grove and Laguna Shanti.

Among the local groups, the money has been spent to give life to myriad services, including AIDS testing and education, counseling services, meals programs, massage therapy, residential care and transportation networks.

The programs include an independent Fountain Valley-based organization called Baby Buddies formed last year to help families with AIDS-infected children and youngsters whose parents have AIDS. Such programs have been launched in less than a decade. But service providers say they still have not been able to keep pace with the growing need.

In Garden Grove, Miller said there has been a noticeable lack of physicians, therapists and psychologists to staff service centers and provide professional care for AIDS patients.

“Now if they’ll consider doing it at all, you’ve got to pay them for it,” he said. “I don’t blame them.”

Four support groups at his AIDS Response Program, once staffed by professional counselors, are now led by volunteers.

“I don’t feel comfortable with that,” Miller said. “If you can get people access to these programs, you can’t get state-of-the-art treatment.”

At Laguna Shanti, where financial problems threatened to close the center, Executive Director Judith Doyle said she has not been able to hire a skilled staffer to apply for critically needed state and federal funds.

Smallest of the three main organizations, Laguna Shanti provides services such as home meal delivery and massage therapy not offered by other groups.

“We are in desperate need at this point,” Doyle said. “. . . We’re essentially in the midst of a tremendous campaign to bring back donations to Shanti.”

Last-minute fund-raising efforts appear to have forestalled a threatened closure of Laguna Shanti next month.

However, Penny Weismuller, the County Health Care Agency’s AIDS coordinator, said all of the woes cannot be solved by simply pouring more money into the county. In some cases, she said she fears that additional money--such as the $1.3 million in federal funds expected next year--could create more trouble.

“In some other communities, what has happened is there are fights between groups and the competition heats up and coalitions fall apart,” she said.

In 1986, Weismuller said, competition between local groups vying for the first state grant for direct AIDS services resulted in the money going to another organization outside Orange County.

“The bottom line was, we didn’t get that $40,000 because the state gave it elsewhere,” she said. And during a recent scramble for funds, Weismuller said, she could barely get representatives of two local service groups to speak to each other.

“We cannot afford competition,” she said.

The Orange County Health Care Agency received its first public money in 1984, about $50,000 to hire a “surveillance nurse” to keep track of the increasing number of AIDS cases. A year later, without benefit of federal or state funding, the county began testing for the AIDS virus.

Public money was so scarce that AIDS activists turned to wealthy conservative gay men who were willing to fund the fight against AIDS but who did not want to be associated with ARP because of its connection to the gay and lesbian center.

“It was really a matter of, if we were going to pry money out of these people, we needed to have something separate,” ARP’s Miller recalled.

The birth of the AIDS Services Foundation is largely credited to Orange County businessman Al Roberts, who organized a 1985 fund-raiser at his Laguna Beach home that took in $35,000 to open the first ASF office in Costa Mesa. To date, Roberts is credited with raising nearly $1 million for the local AIDS cause.

Pesqueira and another activist, Steve Peskind, became the first employees of the foundation.

Two years later, with the financial support of other friends, Peskind opened another AIDS support group, Laguna Shanti. The move jolted ASF, said Pesqueira, who continued to work for the Irvine group until 1990.

Shanti “was really a threat to them because it was like, ‘Are you going to take away our money?’ ” Pesqueira said. “That whole competition thing started then. It’s just continued to build momentum over the years.”

Part of the county’s strategy for a more collaborative approach in the delivery of services was the creation of the HIV Advisory Committee. Composed of health care officials, social workers, minority leaders and representatives of community groups, the committee represents a multi-pronged approach in identifying local needs.

Some committee members have said the panel has been particularly helpful in moving the philosophy of care from one of merely tending to the needs of the dying to meeting the practical day-to-day needs of those who are living longer with the disease.

While early patients often died within six months of initial diagnosis, early intervention, new medication and timely treatment of infections have worked to extend the lives of AIDS patients. That change, however, has placed even more stress on AIDS centers which must expand their in-home care services, transportation to doctors’ appointments, meal delivery and a host of other services.

Some weary activists wonder who will do the work tomorrow.

“We’ve run through all of the do-gooders in the gay community who used to provide these services,” Miller said. “We’ve used them all.”

The stress is evident in those who have put in the most time.

“It’s real hard for me to remember life before this disease,” Miller said.

Pesqueira still hangs onto the notes from that first support group and the memory of a face blushed with lesions. And he can’t shake the strange emptiness that has replaced 150 friends who’ve died.

“I feel like a veteran of a war that no one wants to acknowledge,” he said. “I always imagine people’s lives in terms of their whole space, their apartments, their possessions, their friendships, all that stuff that links people. When they’re gone, there’s just this vacuum.”

Mention AIDS around Gentry, the Laguna Beach mayor, and he’ll dig into his briefcase and produce a worn newspaper clipping from 1981. “Second Deadly Ailment Linked to Homosexuals,” the headline reads. Gentry keeps the article with him, wherever he goes.

“There’s a certain amount of guilt, there’s a certain amount of fear and a tremendous amount of apprehension about being left alone on the planet,” he said.

Complications of AIDS

The number of AIDS cases in Orange County has risen steadily since 1982, and projections for the first six months--in the 250-275 range--put 1992 on a pace for a new high. Medical advances and other resources dedicated to counteract AIDS are credited with helping reduce yearly mortality rates, in turn requiring additional medical and social services to help those with AIDS in daily life. The mortality rate is the incidence of death among those in whom AIDS was diagnosed during the corresponding year.

AIDS Cases Soar

‘91: 463

Mortality Rate Down

‘91: 29%

AIDS Spending: a Case In Point

Irvine’s AIDS Services Foundation is largest of the three private AIDS services groups in Orange County. About half of its $2.2-million budget is raised through private fund raising, the other half from public sources.

How Money Is Spent

Nurses for new cases: 47%

Social services: 24%

Administration: 15%

Fund raising: 8%

Volunteer services: 6%

Education programs: 1%

Note: Numbers do not add up to 100% because of rounding.

Sources: Orange County Health Care Agency; AIDS Services Foundation

The Next Step

Leaders of local AIDS groups say their next major challenge is to deal with the growing incidence among minorities, especially Latinos. Part of that challenge, said Priscilla Munro of the AIDS Services Foundation, is to possibly conduct more education programs in areas of the county with the largest case numbers, such as Costa Mesa, Santa Ana and Anaheim.

Latino Cases Soaring

The number of AIDS cases among county Latinos quintupled in the five years between 1987 and 1991. Cases through June 30, 1992, already have reached 61. Latinos’ share of all county cases doubled during the same period:

1991: 93

1987 1991 Whites 88% 75% Blacks 2% 3% Latinos 9% 20% Others 1% 2%

A Countywide Problem

AIDS is no longer a problem of just South County or coastal communities. Here are the five cities with the most cases and the highest rates per 10,000 residents, both measures as of June 30:

AIDS CASES

Santa Ana: 266

Laguna Beach: 265

Anaheim: 214

Huntington Beach: 146

Costa Mesa: 135

Garden Grove: 135

RATE PER 10,000 RESIDENTS*

Laguna Beach: 20.8

Laguna Niguel: 4.5

Dana Point: 3.7

Costa Mesa: 3.5