Monday, March 20, 2006

DELRAY BEACH — Nearly 20 years after a doctor told him he had the virus that leads to AIDS, Jeff MacDonald is fit, cheerful, and stands before large groups to say HIV patients still can live good lives.

He credits his own life to the more than a dozen pills a day that he takes and to a wry but upbeat motto that he repeats with a laugh: "Once positive, always positive."

Recently, though, he found himself remembering the year he spent on a waiting list for help getting food and medicine, when he juggled a budget so finely balanced that the cost of driving to see a specialist meant missing a meal. Meeting friends was a luxury he couldn't afford.

It was an anxious, isolating, depressing time that ended when the Comprehensive AIDS Program assigned him a case manager to help him with what one social worker called "the full-time job of being HIV positive."

It was a time that was now four good years behind him, but a time he recalled again last week when he learned that Palm Beach County had been hit with its steepest loss of federal money for HIV/AIDS patients since the epidemic began more than a quarter-century ago.

The more than $1.2 million drop in funding for this year will cut food allowances to patients by 75 percent and nearly halve the amount of money available to help patients with legal services.

CAP, the larger of two nonprofit organizations in Palm Beach County to receive the federal money, has estimated the cut will leave about 600 HIV patients without dependable transportation to their doctors, take groceries from about 800 patients and force about 400 to navigate a maze of medical and social services on their own.

MacDonald, like others familiar with the support HIV/AIDS patients need, believes the cutbacks will also, ultimately, cost patients their access to lifesaving medical care.

"What are they thinking?" MacDonald said.

The answer to why the county lost 13 percent of its HIV/AIDS funding remained a mystery for two weeks after the cut was announced.

Late last week, federal officials delivered the answer in an evaluation of the county's grant application for the money.

The evaluation noted that portions of the application were unsupported, inconsistent and unclear. It also said that the application did not adequately address the barriers to social and health services for Haitian and African-American patients. It also fell short in dealing with barriers confronting patients living in the hard-hit Glades region, where transportation problems were described in just one sentence.

The evaluation also says the county did not propose sufficient remedies for those problems and did not provide a plan to encourage people living with AIDS to remain under medical care.

The application was prepared by the county's Department of Community Services, where director Ed Rich said Friday he would use the feedback to improve future applications. He also said he would investigate appealing the decrease.

"I really want to check into the appeal process, because $1.2 million is a lot of money," he said.

Although two other Florida metro areas also received less money than the year before — Jacksonville and Miami got roughly 2 percent cuts — the other three Florida metro areas eligible for the money got increases: Orlando, 7.5 percent, Tampa Bay, more than 4 percent; and Fort Lauderdale, more than 2 percent. Eight other areas across the country received raises. To be sure, funding decreases can be spurred by a drop in AIDS cases. But that's not the case in Palm Beach County, where an estimated one of every 131 people is living with HIV/AIDS.

The 1992 congressional act granting federal money for HIV and AIDS patients was named in memory of Ryan White, the Indiana teenager who was barred from attending school after he contracted the virus from a blood transfusion. Its primary use is to ensure that HIV and AIDS patients have access to medical care, an increasingly complicated proposition as the disease continues to disproportionately hit some of the country's poorest.

This is particularly true in Palm Beach County where, from the mid-1980s, the epidemic has disproportionately affected poor and minority people, a trend since repeated across the nation. Here, about 75 percent of clients receiving case management from the Comprehensive AIDS Program live below the poverty line.

"We have clients who come in the door who have no income, no insurance and an immediate need for food. How are you going to say no to them? Is someone who doesn't have food on the table going to be committed to going to the doctor?" asked Stephanie Moreau of the Delray Beach office of the Comprehensive AIDS Program. "Is someone who doesn't have transportation going to be able to get to the doctor?"

One of her office's clients is Mary, now a working mother of a healthy toddler, but who was pregnant, alone, new to the United States and terrified when, a little more than two years ago, an obstetrician told her she was infected with HIV.

"My mind stopped working right," said Mary, who does not want her real name used. "I couldn't sleep at all. I used to look at the clock until 5 a.m. I used to pray that I could go to sleep and not wake up. I used to look for a space to cry, all the time."

She comes from a middle-class family in a country where the disease is endemic and nearly always fatal. She hasn't even told her mother, who is a nurse, that she is infected.

"I wish I just had cancer," she said.

A social worker immediately began to call her and leave messages, which, paralyzed with dread and panic, Mary didn't return. Then the social worker appeared at her door.

"She told me, 'We have to save your baby's life.' " Mary began to take medicine, but the cash she had saved for after the baby's birth was being consumed by doctor visits and cab fare to their offices. Eventually, she found her way to CAP, where a caseworker told her that she could get help to pay rent on a decent apartment and with food and transportation to doctors.

"I was being treated like other people," she said.

Taking charity bothered her: "I always thought of myself as a strong woman who could do everything." But she said, the help she got made her stronger, and now she is working again.

Someday, she said, she will be strong enough to go back to her country.

"I will have a long story to tell. People in my country say the U.S. doesn't care. But they do care. They save people like me. If they didn't care, they wouldn't do it."

Although local health planners vow they will continue to try to save people like Mary, they say they will have to do it with fewer resources. Eight of the 52 caseworkers at CAP will lose their jobs as a result of the cuts. Compass, the other organization to receive Ryan White money, will not fill an open caseworker position.

Waiting lists for their services, like the one Jeff MacDonald remained on for a year, will be longer, and the length of time patients can regularly see a caseworker will be limited to three months. Patients who need mental-health counseling will be limited to six months of therapy, and in-patient substance-abuse treatment will be shortened from six months to 90 days.

In his mid-40s, Tom is another CAP client who doesn't want his real name used, because he lives with his mother in a retirement community. By the time he was diagnosed with full-blown AIDS in 1998, his adult life already had been consumed by depression, alcoholism and drug use. That's why he got infected, he said: "It's kind of hard to know what's going on when you don't get off your bar stool."

He has seen a therapist for the last two years and says he has remained sober.

"I don't know how many times she's saved my life," he said. Last week, however, he learned that the money paying for his therapy will disappear in six months.

"I can't wait to see what happens then," he said. "So many people with AIDS have the alcohol and drug problem. There are so many people with different problems out there, and the only thing the government can think to do is spend less money on them."

MacDonald, diagnosed in 1985 with a disease he had never heard of and that he was told would kill him within a year, doesn't try to predict the future.

But he wonders what priorities direct policymakers as they confront the epidemic's third decade.

"They've got political careers, and their families and golf courses," he said. "I'm not knocking that. There's nothing wrong with having nice things. It's just when they become more important than..."

He stopped and a half minute passed while he searched for the right word.

"Than life," he concluded.