Linda developed a severe case of pneumonia, and rashes swelled her eyes shut. It was early 1995, and no medical remedy seemed to be helping the AIDS patient. Believing she had just a short time to live, Linda maxed out her credit cards and cashed in her life insurance policy.
“I just thought, ‘God, I’m going to die in less than two years,’ ” said the Laguna Beach resident, who spoke on condition she not be identified. “I wanted to enjoy life while I could. I kept thinking: A year from now, I’m going to be bedridden. One year from then, I’m going to be dead.”
More than two years later, Linda is still unemployed but has married, and her health is holding steady, thanks to new AIDS drugs. But dwindling funds and ballooning credit card debt forced her to recently file for bankruptcy with help from the Public Law Center in Santa Ana, where attorneys said AIDS patients like Linda are a rapidly growing segment of poverty law clients across the nation.
As AIDS patients live longer as a result of new and experimental drugs, they find themselves facing a host of legal problems ranging from bankruptcy to work discrimination, attorneys said.
The trend is evident at the Public Law Center, which performs free legal services for impoverished clients. Since the center started its AIDS Legal Services Division in 1993, its caseload has been growing steadily--and changing dramatically, Executive Director Scott Wylie said.
In 1993, most AIDS cases involved attorneys rushing to a hospital, portable computer in hand, to help patients on their deathbeds resolve legal matters, he said.
“Folks were that sick,” Wylie recalled. “If we didn’t go with a computer right then, we would not go"--the patients would soon be dead.
Roughly the same number of AIDS patients still seek out the center’s help in drafting wills and other routine legal matters today. But since 1994, the unit’s bankruptcy cases have doubled, complaints of landlords discriminating against AIDS patients have increased more than 60%, and disputes over benefits for AIDS patients have jumped 75%, Wylie said.
“We are now seeing a shift from lawyering for the dead to lawyering for people who are living--living in precarious health situations,” Wylie said.
The same trend is playing out across the nation and is especially notable in areas where a large number of people are living with AIDS. The San Francisco AIDS Legal Referral Panel, for example, has also seen a 50% increase in cases dealing with credit, bankruptcy and discrimination issues.
The changing face of AIDS is requiring the legal community to respond, said Gabrielle Sigel, a member of the American Bar Assn.'s AIDS Coordinating Committee and a board member of the AIDS Legal Counsel of Chicago.
Attorneys must now be prepared to handle issues involving long-term health care, access to life-extending medications and qualifying for disability benefits, she said.
“As changes in the disease and response to the disease affects the population, you must be able to adapt and focus your legal energy to address the population’s needs,” Sigel said.
Some AIDS patients are living longer with the help of so-called AIDS “cocktails,” experimental drugs that aim to suppress the AIDS virus, often to undetectable levels. The drugs are relatively new, there is little data as to how long they are expected to help AIDS patients live, and many warn that the drugs are not effective for all patients.
But the drugs appear to be working for some.
According to the Orange County Health Care Agency, the number of reported county deaths took a 52% drop from 309 deaths in 1994 to 146 deaths in 1996. The decrease reflects both the leveling of case reports and improved survival among those living with AIDS, according to a county report.
The national Centers for Disease Control and Prevention also report that during the first half of 1996, the estimated number of AIDS deaths nationally dropped 13% from the previous year, leading the report to conclude that “these drugs promise to further lengthen the life span of individuals living with HIV"--the virus that causes AIDS.
For some AIDS patients, the years of life they didn’t foresee came with a host of financial problems they are often ill-equipped to handle.
As a result, they often rely on places like the Public Law Center in Santa Ana, which is privately funded and sponsored by the Orange County Bar Assn.
Most common are credit and bankruptcy cases, said center attorney Susan Eastman, who said many clients push the limit on their credit cards out of medical necessity, while others never had the luxury of making long-range financial plans.
“Most of our clients didn’t anticipate living this long,” Eastman said.
Most of the AIDS patients that come to attorney Georgia Garrett-Norris’ private practice in Santa Ana are also seeking legal help because they don’t have coverage for needed prescriptions, or are afraid of turning in their insurance claims--and possibly revealing to their employers that they have AIDS.
The need for costly medications quickly turns into a downward financial spiral, she said.
“They’re paying upward of $1,500 a month for medicine, they end up going on disability, meanwhile they’ve got credit card debt,” said Garrett-Norris, who is on the board of the county’s AIDS Services Foundation. “It’s an economic catastrophe for a group of people.”
The case of Laguna Beach resident Greg Sexton, 37, illustrates her point.
In March 1996, Sexton was hospitalized and told he had a 10% chance he would survive the month. An attorney from the Public Law Center helped him draft a will and other documents barring doctors from taking heroic measures to keep him alive.
“I believed I did all I could and felt I could start concentrating on dying,” the AIDS patient recalled.
He sold all of his possessions and placed his assets in a trust fund for his two young children. He said he left nothing for himself. He beat the odds and was eventually released from the hospital, only to find himself flat broke. He began taking experimental drugs in August, and his health improved steadily--as his financial problems got worse.
At one point, creditors were threatening to repossess his car because of paperwork problems that routinely delayed payment to his doctors. Some of Sexton’s medical bills remain unpaid, and he now struggles by on $844 a month in disability benefits.
He says he will always be grateful for the legal aid that helped him get past his insurance problems so he could receive medical attention.
“I just can’t imagine what it’s like for somebody who doesn’t know what services are available for them,” Sexton said. “It’s not a well-known fact that civil issues include getting people off your back when you have to spend your money on AIDS medications.”
Employment discrimination against AIDS patients prevents many from simply getting a job to pay off their debts, attorneys said. Even if a person succeeds in hiding the fact that he has AIDS, how does he explain the gap on the resume--time which may have been spent in a sickbed, or trying to enjoy one’s final days?
“The bottom line is that they’re going to give the job to someone who’s healthy and doesn’t have an illness before they give it to me,” said Sexton, who is trying to make his way back into the work force.
Linda concedes she was a bit reckless with her money when she believed she was about to die. First, she made sure she qualified for long-term disability. Then she went about living.
“I probably charged more on my credit cards than I should have,” she said. “I went out to eat a lot, for example, thinking that a year from now I probably won’t be able to. I even helped some people out financially, which I shouldn’t have.”
Linda declared bankruptcy a few months before she started taking the AIDS drugs that she says are responsible for prolonging her life. There are a few regrets.
“If I had known these drugs were on the horizon, I would have done a lot of things differently,” she said.
While the new AIDS cocktails work for many, there remains a sobering truth, and the evidence is the growing number of cases handled by Wylie and other attorneys.
“The reality is that the drugs have allowed some people to have a better quality of life and, in many cases, to live many more years,” Wylie said. “But it does not change the fact that they still have AIDS: a terminal illness. They’re just dying more slowly.”