Poor Victims Struggling on the Home Front of the AIDS War

AIDS has left Jenny Bragdon frail, broke and sharing a trailer in Huntsville with her 84-year-old mother.

Bragdon blames no one but herself for the disease she contracted in long-ago days of prostitution and drug abuse. And she doesn’t begrudge the emerging crusade to fight AIDS in the Third World.

But as she hears of low-cost drugs targeted for Africa, Bragdon has a question: “If we spend all this money on other countries, who, down the road, will help us?”

Billions of dollars are now spent each year on medications and services for Americans with AIDS and HIV, including the potent drug “cocktails” that cost more than $10,000 per person annually. Even the poorest of U.S. patients--unlike their counterparts in Africa--have a chance of obtaining treatment.

Despite remarkable advances, however, America’s home-front battle against AIDS remains a patchwork effort, with care ranging from world-class to perfunctory.

And as drug companies, under pressure, move to slash the cost of AIDS medications for developing countries, many working-class Americans endure emotional and financial trauma as they seek lifesaving treatment.

“Sometimes there are a lot of hoops to jump through, and some people don’t want to do that,” said Terje Anderson, executive director of the National Assn. of People with AIDS

In Alabama, one of several states that has been stingy with AIDS funding, more than 400 people are on a waiting list to qualify for subsidized medication under the AIDS Drug Assistance Program.

Known as ADAP, and funded with a mix of federal and state money, the program serves people who are ineligible for Medicaid or Medicare but are not adequately covered by private insurance.

In Alabama the wait can last several years, and patients must scramble for alternatives in the interim. Experts say the primary option--free medication donated by drug companies--is getting more difficult as some corporations weary of Alabama’s tightfistedness.

“A few years ago it was relatively easy for individuals to get medications through compassionate-use programs, but now the companies have tightened their criteria and require more effort to get people enrolled,” said Dr. Don Williamson, Alabama’s state health officer. “There are probably, now, people in Alabama who really need medicine who are not getting medicine.”

Rita Finley was on Alabama’s waiting list for two years before qualifying for ADAP.

Finley, 50, was diagnosed with full-blown AIDS in 1994, probably the result of a romantic relationship several years earlier. By 1996 she was too ill to keep her job as supervisor for a jewelry company.

As the company’s health coverage ran out, she had no assurances she would be able to afford medications, and even wondered if she should commit a crime to get free drugs in prison.

“You keep asking, ‘Where am I on the list?’ and you don’t really know until you’re near the top,” said Finley, who moved in with her parents in Huntsville. “No amount of people saying, ‘Don’t worry, you’ll get your meds’ can spare you that feeling of panic.”

Finley finally made it off the waiting list.

Marilyn Swyers, executive director of East Alabama AIDS Outreach, said time-consuming paperwork is required each month for a patient to qualify for free medications from drug companies. One mother with HIV simply gave up, preferring to expend her energy on her children, Swyers said.

Alabama is the only state with such a long waiting list for ADAP, primarily because the legislature has contributed little state money thus far to match federal funds.

But many of the problems in Alabama mirror those in other states. A majority of the 800,000 to 900,000 Americans with HIV--from those who are simply HIV-positive to those with full-blown AIDS--are not receiving regular care.

Housing for people with the disease is scarce, as is transport for poor rural patients. Ignorance and bias abound, particularly outside major cities.

“I’ve been a social worker 22 years, and I’ve never had the kind of challenges we face,” said David deShazo, an AIDS outreach worker for the last two years in rural areas of southern Alabama.

“The people living with this virus face such stigma,” he said. “People are kicked out of their churches, made to sleep in their cars. There’s such fear and denial, people don’t want to get tested.”

Bragdon, 46, has had many years to get used to cold shoulders; she tested positive for HIV back in the mid-1980s.

Unlike many low-income AIDS patients, she has clung to a private health insurance plan that dates from her pre-AIDS hairdressing career. The plan covers her costly medications but requires contributions that consume a large chunk of her monthly $623 disability check.

As a result, she had to give up her apartment and move in with her mother at a mobile-home park. Each month is a struggle to pay their bills.

“You lose dignity with this disease,” Bragdon said. “You’re too young to retire, too sick to work.”

Daunting financial burdens also face the West family; 11 of them, spanning four generations, share a house in the small town of Falkville in north-central Alabama.

One of the children, 19-year-old Johnny, contracted HIV from a blood transfusion three days after his birth in 1981. He also is blind and has been unable to walk since an AIDS-related seizure last year.

His AIDS medications--which cost $15,000 a year--are covered by Medicaid, but his mother, Sherrie West, had to quit her job at nearby Decatur Hospital to care for him.

“We’ve taken a $2,000-a-month hit,” she said. “We’re robbing Peter to pay Paul.”

About 10,000 Alabamians are believed to have AIDS or HIV, with more than 700 new infections reported annually. Blacks account for 26% of the state population but 70% of the new AIDS cases, officials say.

Contributing to the high AIDS rate among blacks is widespread mistrust of white health care professionals, stemming partly from the U.S. government’s secret syphilis experiments in Tuskegee. About 400 black men suffering from syphilis were denied treatment during a four-decade project that was canceled in 1972.

“As a white man, I fight that mistrust on a daily basis,” said deShazo. “Men in these rural areas tell me they aren’t going anywhere near their county health department.”

In the legislature, one of the leading advocates of increased AIDS funding is a black college administrator from Huntsville, Rep. Laura Hall. Her son and two cousins died of the disease.

“My mission, because of my son, is to be sure there will never be another family that suffers in silence and goes without what they need,” Hall said.

She is pushing for a $6-million state allocation this year, enough to eliminate the waiting list.

But with Alabama in a budget crisis that has forced school districts to consider teacher layoffs, Hall and her allies expect approval for only $2 million. That would avert a cutoff of $8 million in federal funds and possibly trim the waiting list by half.

Reflecting disparities in AIDS programs nationwide, there are glaring contrasts between Alabama’s rural areas and state-of-the-art facilities and programs in Birmingham, the largest city.

The University of Alabama-Birmingham is a leader in AIDS research and operates a top-notch AIDS clinic serving patients of all income levels. AIDS Alabama, the state’s leading advocacy group, has overcome neighborhood wariness and opened a housing complex in the city for individuals and families affected by AIDS.

The subsidized housing has been a godsend for Lawanda Bridges, an Army veteran with AIDS who shares a handsome new apartment with her 4-year-old son, Barrett. She chips in $108 a month for the housing, a third of her previous monthly bills for rent and utilities.

Just two years ago she was prostituting and abusing drugs; after a three-day binge, she sought help from AIDS Alabama.

“I was a terrible person, and I had to change everything,” she said. “I never thought in a million years I could live like I am now. I’m glad the agency didn’t give up on me.”

But the poor in rural counties don’t have the same options, said Mary Elizabeth Marr, executive director of the AIDS Action Coalition in Huntsville, about 90 miles north of Birmingham.

“We’re looking at people who don’t have resources, don’t have transportation, their housing is shaky, they possibly have substance abuse problems,” Marr said. “There’s no way they can get to someplace like Birmingham.”

Another problem in rural areas is that many doctors shun AIDS patients. Swyers said her agency in Auburn invited 36 local doctors to hear a presentation by a Georgia-based AIDS expert. None of them attended.

“They just don’t want to deal with it,” she said.

Randall Russell, the executive director of AIDS Alabama, said he is frustrated that state politicians seem willing to chip in only the minimum funding needed to prevent a cutoff of federal money.

“I remember coming back from an AIDS meeting in South Africa last year and thinking, ‘Shame on us if, with all these resources, we can’t figure out how to deliver health care to everyone here,”’ he said.

Russell was speaking of Alabama, but major AIDS advocacy groups would apply his assessment nationwide. Some states are generous; others have tough minimum-income requirements for their medication programs, and limit coverage to only a fraction of the many infection-fighting drugs.

“The AIDS pandemic has taken on biblical proportions in sub-Saharan Africa--it’s a crisis, and we all need to be involved,” said Tanya Ehrmann, public policy director of AIDS Action, which represents 3,200 community groups.

“However, the U.S. hasn’t solved this epidemic within our own borders,” Ehrmann said. “We have not found ways to prevent new infections, we have not ensured that every person with HIV and AIDS has access to health care, and we have not ended discrimination against people living with HIV and AIDS. There’s still a lot of work to be done here.”

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AIDS Alabama: https://www.aidsalabama.org

Federal AIDS information: https://https://cdcnac.org