AIDS Sufferers to Increase Sharply, Require Longer Care

Joey LaForce clearly remembers the day he learned he had AIDS. It was May 5, 1985; he was on vacation in Orange County from his home in New York and he was having a great time.

“I was so excited. It was Cinco de Mayo. I had never been to California before,” said the friendly, outgoing 33-year-old. He went out to dinner, and there he promptly collapsed.

Rushed to a Newport Beach hospital, he had a bronchoscopy, an always unpleasant, often painful diagnostic procedure in which a tube is inserted down into the lungs to obtain a biopsy of tissue. LaForce’s biopsy revealed that he suffered from a type of pneumonia peculiar to sufferers from acquired immune deficiency syndrome, or AIDS.

“It was a very rude awakening to California,” he recalled.

After he came to terms with his inevitably fatal illness--a process that involved buying a car, driving across the country and doing “all the things you’ve wanted to do in case you don’t have much of your life left . . . the typical, dramatic, made-for-TV thing”--he “ran out of land,” settled in Huntington Beach and became an Orange County statistic.

LaForce is one of Orange County’s 325 AIDS cases. Of those, just under 200 have died. In addition, more than 500 others have been diagnosed with sometimes equally devastating AIDS-related conditions that can precede an AIDS diagnosis. Orange County has had more reported cases of AIDS than all but 15 states in the country.

By the early 1990s, according to a just-released county report citing U.S. Centers for Disease Control figures, the number of AIDS cases in Orange County alone will have more than quadrupled to 1,425, more than 800 of whom will have died of the disease. AIDS-related complex cases, otherwise known as ARC, are expected to number about 1,800. These figures do not include the unestimated number of people who will have been exposed to the virus and, though they do not suffer its debilitating effects, may transmit it to others.

“It scares me,” said Parrie Graham, executive director of the county’s private, nonprofit AIDS Services Foundation. “I’m seeing more and more cases, and we aren’t even meeting the needs now. . . . It’s bad now and it’s going to get worse.”

Orange County health officials have begun to look to the future by writing a proposed “AIDS Master Plan,” an attempt to anticipate medical, social and economic needs as AIDS cases mushroom. The report will be presented to county supervisors next week.

It concludes that the county’s most pressing AIDS problem is the dearth of nursing home beds for patients who are well enough to be discharged from the hospital but are too ill to care for themselves at home. It’s a problem that is certain to worsen.

The dilemma will sharpen because not only will the AIDS patients grow in number, but they also will live longer and require care longer, as new treatments and drugs are discovered to control the rampages of the human immunodeficiency virus, authorities said.

The proposed master plan also identifies intravenous drug users as a key target in the county’s battle against the spread of AIDS. While this group accounts for only 3% of the county’s AIDS cases to date--gays and bisexuals account for 90%--intravenous drug users can be a major source of transmission into the larger heterosexual community, adults and children, according to the report.

Other areas to focus on in the effort to prevent AIDS and assist its sufferers include housing, education, health care availability and financing, case management and mental health services, according to a survey of AIDS-related organizations cited in the county report.

The master plan proposal recommends that the county set up an advisory committee to provide “ongoing AIDS planning” and work to find funding for nursing home care. The plan also calls for the county Health Care Agency to continue its activities in AIDS education, testing, gathering statistics and evaluation of patients, while encouraging the efforts of private community-based organizations.

But several spokesmen for the private organizations, while applauding the county’s efforts in drawing up the master plan, say it does not go far enough. The plan is more of a statement of what the county is currently doing instead of a call for bold changes for the future, they said.

“It’s a step in the right direction, but we have a ways to go,” said Graham of the AIDS Services Foundation, which helps AIDS patients cut through the red tape of social services, in addition to offering counseling, housing and other assistance. The plan particularly falls short in addressing the enormous mental health care demands of AIDS sufferers, who must cope with the psychological problems of facing a terminal illness, on top of the dementia and other neurological damage the disease can produce, she said.

The AIDS Services Foundation has requested that the county hire two “case management workers,” people who would guide AIDS patients through the maze of paper work necessary to receive state disability payments, apply for Medi-Cal assistance and qualify for other social programs, she said.

AIDS is a catastrophic disease that drains its victims physically, financially and emotionally, she said. Where they once had been independent, functioning members of the community, AIDS victims suddenly are dependent on that community for help, she said.

“These are really sick people who are not capable of dealing with the paper work and not capable of understanding what has to be done,” Graham said. Currently, case management services are supplied in Orange County only by the AIDS Services Foundation, while neighboring county governments hire workers to do the job, Graham said.

Werner P. Kuhn, advocacy chairman for ACTION (AIDS Coalition to Identify Orange County Needs), a network of organizations working to combat AIDS, said a “major disappointment” is that the proposed master plan does not call for the county to spend additional funds on the disease. Other counties, he said, financially assist their community groups’ prevention, education and counseling programs.

“As the number of AIDS cases continues to grow at a substantial rate, the commitment of additional resources is a reasonable expectation,” said Kuhn, who is also director of the AIDS Response Program of Orange County, the educational project of the Gay and Lesbian Community Center.

There also is an undercurrent of suspicion among community groups that the politically conservative county government is not more aggressive in the AIDS battle because the disease’s predominant victims are homosexual, not heterosexual.

“The fact that more money is not going to AIDS is because the general public is not pushing for that,” said Nancy Radcliffe, a spokeswoman for the AIDS Response Program.

The county currently spends $358,684 a year in local tax dollars on AIDS for its public health laboratory, AIDS testing site, educational activities and medical services. In addition, the county spends $374,659 in state funds to monitor the disease and to present education and prevention programs.

Los Angeles County has devoted $7.3 million of its money to AIDS in the last two years, and critics there say the effort has fallen short of meeting the existing need.

Answering criticisms of the proposed master plan, Orange County health care officials say the formation of an AIDS advisory committee--representatives of county health and social services agencies, along with community groups--will lay the foundation for making specific changes in the future.

“This is just the beginning of planning. We need some sort of ongoing mechanism to continue the process, and the committee will serve that need,” said Dr. Thomas Prendergast, Health Care Agency deputy assistant director in charge of epidemiology and disease control.

Prendergast said the county has received a $100,000 state grant that would finance an educational program directed at intravenous drug users.

“If the distribution of this disease continues to increase among IV drug users, a series of problems will inevitably follow,” Prendergast said. “A communicable disease of major proportion moving into any subgroup is a concern, but it is very disturbing among IV drug users.”

The county is concerned that the Latino community is especially at risk because migrant workers, away from their families, are prone to seek the services of prostitutes--many of whom are IV drug users, Prendergast said. To monitor the risk, the county has been testing, on a voluntary basis, women prostitutes and IV drug users at the Orange County Jail. Of 950 tested, 28 have been found to be positive for the AIDS virus. So far, there has been no evidence that prostitutes have transmitted AIDS to Latinos, county officials said.

“But that’s not a problem we can relax on. The danger is just too great,” Prendergast said.

Still, educating the IV users will be especially difficult because unlike other groups at risk for AIDS, drug addicts “have no community,” Prendergast said. A dispersed population of individuals already engaging in socially and personally destructive behavior, drug users are a troublesome group to motivate to change, authorities said.

By contrast, Orange County’s gay community has done a commendable job of educating its members about the threat of the disease, Prendergast said. Two years ago, Orange County had the third largest number of AIDS cases in the state; today, it has dropped to fifth place.

“The gay community has been responding in a positive way. That has to have helped,” Prendergast said.

Radcliffe of the AIDS Response Program said that while it is difficult to measure the impact of the group’s efforts, it is evident that homosexuals are changing their sexual practices to reduce the risk of AIDS. The Gay and Lesbian Community Center has a support group for those who test positive to the AIDS virus--people who have been exposed to the disease and who can transmit it, although they may be symptom-free--and “it’s clear that behavior changes grow with the length of time in the group,” she said. “The longer they’re in the group, the greater the quality and quantity of those behavior changes. . . . Gay men are motivated to change out of concern for others.”

The number of new AIDS cases still is increasing alarmingly, but at a slower rate, Prendergast said. In 1985, it took 12 months for the number of cases to double; currently, officials are figuring the doubling to take 15 months.

Based on the recent trend in case numbers, some county officials believe the Centers for Disease Control’s projection of 1,425 cases by the early 1990s is too high. If the cases continue to increase at the current rate, they said, AIDS and ARC cases will number about half of the CDC’s projection. The proposed master plan predicts that in January, 1990, about 170 AIDS patients will be working and self-sufficient, 156 will be only slightly disabled but still self-sufficient, 103 will require hospitalization, while the remaining 243 will require varying levels of nursing care.

But AIDS Services Foundation’s Graham believes that the county’s projections are way off because they are based on too small a sample of cases that occurred in June. When projections are based on the foundation’s more recent caseload, she said, the CDC numbers are much more likely, she said.

Representatives of the community groups serving AIDS patients say they currently are overburdened and the future is bleak unless they get additional help.

Education is the primary prevention tool, and yet “we are understaffed and underfunded now,” said AIDS Response Program’s Radcliffe.

“There’s a very strong need for expanded prevention services aimed at traditional at-risk groups, as well as at teens and young adults, people who are becoming sexually active and generally not in monogamous situations, people who are more inclined toward sexual experimentation,” added ARP’s director, Kuhn.

For those afflicted with the disease, more assistance is desperately needed, Graham said. The AIDS Services Foundation is financed solely through private donations, and its caseload is burgeoning, she said.

In addition to helping AIDS and ARC patients apply for public assistance, the foundation helps iron out problems with housing, insurance, and finances. Housing is a major problem for many, she said. Living on $553 a month from Social Security, an AIDS patient is hard-pressed to find an affordable dwelling in a county notorious for costly housing, and many times an AIDS patient will lose a roommate when the diagnosis is made, she said. AIDS Services Foundation recently leased a large residence, dubbed House One, to sublet at minimal cost to AIDS patients who otherwise would have “no place to go,” Graham said.

AIDS Services Foundation also offers counseling sessions to help the patients grapple with the emotional trauma of the disease and assigns each new client an emotional support “buddy,” a volunteer who acts as counselor, go-between and friend.

“Half these guys (AIDS and ARC patients) aren’t even out of the closet. They have to deal with an overwhelming amount,” Graham said.

Add to that the mental problems AIDS can cause through neurological damage and the result is an extremely ill and dependent person who must turn to the community for help, Graham said.

People with AIDS and ARC “are already falling through the cracks,” and it is bound to get worse as the numbers increase, she said.

“I try not to think about the future and deal with it on a day-to-day basis,” she said.

The county’s proposed master plan, Graham said, acknowledges that the services supplied by the foundation are necessary, but does nothing to financially support them. Indeed, she said, some of the most difficult and costly cases that AIDS Services Foundation has handled are patients that the county health system has sent to the private organization.

The county has done a fine job of monitoring the disease and providing medical care to its sufferers, representatives of community groups acknowledged, but they said it now must face up to the other demands of AIDS.

“This is for real. This is for keeps. This is not going to go away,” said Randy, a 27-year-old from Costa Mesa who was diagnosed with AIDS six months ago.

Joey LaForce added that heterosexuals are deluding themselves if they believe AIDS is nothing to worry about.

“The heterosexuals are using the same attitude we (the gay community) had five years ago,” LaForce said with a knowing chuckle. “They think, ‘This is America, they cure everything.’ ”