Miami Herald (MH) - Sunday, August 25, 1991
Andres Viglucci; Herald Staff Writer

Gabina Fernandez was living on the streets of Miami when she found out she had the AIDS virus.

Destitute and despondent, she never got the medical help or social services that could have staved off devastating infections.

Only when she could barely walk, debilitated by vomiting and diarrhea, did she go to Jackson Memorial Hospital, where she spent a month at taxpayer expense.

Fernandez, 43, is the new face of the AIDS epidemic. Stoked by a rapid spread among women, minorities, the poor and the homeless, Florida's AIDS caseload is expected to more than double by 1993 -- and with it, the burden on an already creaking public system of care will grow.

"We're struggling now, and we're just about to be overwhelmed completely," said Jim Pruitt, an activist with the People With AIDS Coalition of Dade County. "I have a great fear that things are going to get quite crazy here in the next couple of years."

In Dade, home to almost a third of the state's AIDS cases, the brunt of the increase would be borne by Jackson, the county's only public hospital, and a network of support services based there.

But Jackson is unprepared, acknowledged hospital President Ira Clark, who calls AIDS the most "frightening" epidemic he has seen in his career.

Already, poor people must wait weeks for their first visit to a doctor at Jackson or a publicly supported neighborhood clinic after testing positive for the human immunodeficiency virus (HIV), which is believed to cause AIDS.

The wait is four months for an appointment at Jackson's special immunology clinic, which provides specialized treatment to slow the progress of infections that kill AIDS patients.

The hospital's 70 AIDS beds are usually full. In the emergency room, desperately ill AIDS patients sometimes wait days for a bed -- at risk of catching infections from other patients or of spreading a strain of treatment-resistant tuberculosis to which AIDS patients are susceptible.

Patients complain of long waits at Jackson's AIDS clinics, even while seriously ill, and of rushed care by busy doctors and nurses. Some say that obtaining services through the hospital can be, in one patient's words, "a little short of a nightmare."

"I've learned how to use the system, how to get to people," said the patient, Bruce Moore. "Many uneducated, economically depressed people don't know how."

But only a fraction of the $60 million a year that a proposed half-cent sales tax would generate for Jackson has been earmarked directly for AIDS care -- $3.5 million for an isolation unit for AIDS patients with resistant tuberculosis.

And the hospital does not have a plan for how many more beds or how much outpatient clinic space it might need to cope with growing AIDS caseloads.

Clark contends the problems prove the need for the tax. He says it will benefit AIDS patients, along with other patients, by cutting waiting lists for diagnostic tests and expanding home health services and hours at county-run clinics.

But absent increased AIDS funding from the state or federal governments, and given heavy demands for other kinds of care, Jackson can do only so much to cope with the epidemic, he said.

"The doubling of the caseload won't happen precipitously. We will clearly be able to see which way this thing is going, and we'll do whatever makes sense to contain that," Clark said.

"The problem is, no plan is worth a damn without the resources to carry it out. I don't have the luxury of dealing with AIDS in a vacuum."

Although the AIDS crisis in Dade extends beyond Jackson, the hospital has become a lightning rod for criticism by activists and community agencies -- much of it centered on how Jackson spends its AIDS money.

About a quarter of the $35 million in public money spent every year on AIDS care in Dade goes to Jackson, said Linda Quick, executive director of the Health Council of South Florida, an independent planning group.

But the Jackson-based South Florida AIDS Network also controls much of the public money that goes to community groups in Dade for support services such as home nursing, counseling and meals on wheels. About 6,000 HIV and AIDS patients are enrolled in network services.

Advocates for AIDS patients contend that too much of the network's money -- $2 million out of a total $6.4 million -- goes directly to Jackson, instead of to community services.

They say the problem is rooted in the network's history: It was founded at Jackson during the early days of the epidemic, when the hospital was virtually the only place in town for those with AIDS.

Now, with improved treatments, the disease is coming to be seen less and less as a catastrophic ailment and more as a chronic condition. AIDS advocates contend the network hasn't evolved fast enough to keep up with the changes.

They call for an agency independent of Jackson that can steer money to the places it can best be used, not just to the hospital.

"As long as Jackson controls a decision-making body which allocates funds to itself, they will be open to allegations of conflicts of interest," said Catherine Lynch, director of Health Crisis Network, an AIDS group. "I'd like to see Jackson have less influence."

But, she added, "they're in a very difficult situation because of the lack of resources. If I had to figure out how to fix it, I would be tearing my hair out."

Community services have become critical as the course of the epidemic has shifted. Ten years ago, when the disease was first identified, an AIDS diagnosis was usually soon followed by death.

Now, people with AIDS live longer -- years in many cases. A greater focus on early medical intervention has slowed the development of AIDS symptoms in people who are HIV-positive, researchers believe. And specialized drugs and treatment can check pneumonia, brain infections and other maladies in people with fully developed AIDS.

"If their cases are managed properly, people can stay out of the hospital," said Richard Stevens, director of the HIV/AIDS division at the Health Council.

That is not only more humane, he said, "it's much more cost-efficient."

Keeping people relatively healthy, however, will require spending more on drugs, basic preventive care in neighborhood clinics, counseling, transportation, meals on wheels and other support services.

Those services, health officials and advocates say, are in critical undersupply.

At the Coconut Grove Family Health Center, one of a network of overloaded, publicly supported clinics, the number of HIV patients has tripled since last year, to 150, said director Cal Davis. But the clinic has only one internist and one general practitioner to cope.

At Stanley C. Myers Community Health Center on South Beach, the HIV caseload is about 250, and increasing at the rate of a dozen a month. There are no appointments for new HIV patients until October, said Richard Kuyper, coordinator of AIDS services.

"You're playing Solomon. A patient calls and you try to judge how desperate he is and try to get him the first possible appointment," Kuyper said.

"When you do all the juggling and can't come up with anything, it's frustrating. These aren't people who have a headache. They have life-threatening conditions, and, in most cases, they're not getting any better."

One of the biggest needs is housing. Because Jackson can't discharge sick and penniless AIDS patients to the streets, some remain in the hospital, at $550 a day for room and board, until shelter can be found.

Yet there is only one home for poor AIDS patients in the county, Genesis, run by the Catholic Archdiocese.

Fernandez, the woman who became infected while homeless, has been living at Genesis for the past three months, after her discharge from the hospital. Antibiotics have controlled her infections, and she has gained weight.

"This is my home now. While I have my three meals and my medicines, I can survive longer," Fernandez said.

But Genesis has only 30 beds, and they're usually full. Patients' stays are covered by government disability payments, but that doesn't cover the full cost of operation, administrators say. The home gets no other public funding. Because a private grant ran out, administrators say they're desperately seeking private donations to keep Genesis running.

"We cannot keep up with the referrals," said Ray McGraw, Genesis' social worker.

The community organizations face another potential crisis: The federal Centers for Disease Control is expected to expand the definition of AIDS to encompass more symptoms. Some experts estimate the change could double overnight the number of people considered to have AIDS -- thus vastly increasing the numbers of patients who qualify for publicly supported services.

Few expect that government funding will increase to match the bigger caseloads.

"If they broaden the criteria, all hell is going to break loose," said Kuyper, the Stanley Myers clinic social worker.

Health Council Director Quick said Jackson could alleviate the problem by using money from the proposed half-cent tax to cover more AIDS care, freeing up other sources of funding for community services through the AIDS Network.

Barbara Loyd, director of the network, said Jackson can't afford that. It already absorbs $8 million a year in charity care for AIDS patients, she said.

And the network's Jackson-based services are already stretched thin, Loyd said. Because of funding cuts, she had to dismiss six of the agency's 20 case managers -- the social workers who help patients get the care and services they need. But 2,848 new patients signed up for the network last year.

As a result, new patients now enrolling aren't immediately assigned a case manager unless they're seriously ill, she said.

"When you have $6 million and you need $40 million, what do you do?" Loyd said. "You make tough decisions. Everyone's not always going to be happy."

AIDS activists say pressure on the network has made administrators more willing to listen to their concerns. But they say the prospects remain grim.

"The waiting lists are bad, and they're going to get worse, just the same way that's happened with breast cancer," said Lynch, the Health Crisis Network director.

"People are going to die and suffer unnecessarily because they can't get access to a system that's overloaded."

CAPTION: CHART, PHOTO Sister B. Edita Rojo, M.D., talks with AIDS patient Gabina Fernandez at Genesis (AIDS *-color); chart: A Deadly Plague (A:AUG23-Herald Staff, see micro-film)
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