AIDS Patients Make Uneasy Reentry to the Work Force

It had been so long since he was part of the 9-to-5 office routine that Michael did not know what kind of tie to wear to interviews. At a temp agency he had to scan the chests of other job hopefuls for fashion tips.

His wardrobe budget consisted of $50. He took it to a Salvation Army store and bought white shirts and three pairs of pants. He told prospective bosses that he left his job years ago because he had burned out. He asked an old friend to tutor him in computers.

One of thousands with AIDS who have experienced a virtual resurrection in the last 18 months thanks to powerful new drugs, Michael ventured back to the workplace much like a prisoner given a sudden reprieve from a death sentence. Nervous and eager in equal measure, the 33-year-old San Fernando Valley man was reentering a world he thought he had left for good.

After years of living on disability, waiting for the end, many are feeling well enough to contemplate a return to work. Driven by debt and boredom, a much smaller number like Michael have actually taken the plunge.

It is not simply a matter of ringing up old bosses and going back to old lives, however. For the newly fit, revival can be complicated and fraught with economic and emotional questions.

“There’s a lot of fear, caution and trepidation,” said Phil Curtis, a benefits coordinator at AIDS Project Los Angeles. “Is this bubble of restored health going to last?”

How to explain that yawning gap on the resume? Will they be able to afford good medical insurance once they shed the cocoon of government benefits? What happens if they go back to work, lose their disability payments and the drugs stop working, as they already have for some?

“People are starting to feel human again,” said Joani Lavick, clinical administrator of mental health at the Los Angeles Gay & Lesbian Center. “But now there’s this incredible fear about giving up these benefits they have struggled so hard to get. . . . All these anxieties are getting stirred up.”

AIDS service organizations are holding seminars and forming support groups for people mulling returning to work. The Los Angeles city AIDS office has established a task force to study the issue. Curtis says about 40% of his client calls now concern back-to-work issues--although at this point only a fraction of those callers have gone beyond the discussion stage.

In the case of Michael (who did not want his real name used because of his concerns about work), the prime motivator was money. “Finances kind of pushed me out the door,” he said.

He had stopped working regularly in 1992, the same year he was found to have AIDS. Although he tended bar a few hours a week after that, and his partner, who also had AIDS, was given money by his parents, their primary income was government disability.

They had to move from a rental house in Studio City into a $400-a-month “little hole apartment” in North Hollywood. They lost their truck and car. After his partner died two years ago, Michael cashed several of his lover’s $500-a-month disability checks.

“I thought: ‘I’ll be dead. I need to eat,’ ” said Michael, who had been hospitalized several times and assumed he would soon follow his partner. When the Social Security Administration caught on, it garnished a savings account he had with his mother.

He was more than $20,000 in debt, “depressed and scared.”

Then in October 1996 he started taking a combination drug therapy that included the new protease inhibitors. His health improved markedly and his mother lectured him, “It’s time for you to get up and go to work.”

He got a job with a finance company early this year, keeping AIDS off his resume. “Why pour fuel on a fire?” he asks. “It would have made things very uncomfortable.”

He has to keep his silence when he doesn’t feel well at work, covering a painful rash with long sleeves and silently praying, “Get me through it,” when he gets nauseated from his medications.

At one point, he was undergoing chemotherapy. “I felt sorry for myself and I gotta admit, I came home and cried a lot. But I just had that feeling that God was telling me, ‘You hang in there.’ ”

And so he has, sustained by his spirituality. He recently received a promotion, restored his credit and paid off his outstanding bills. He even dreams of buying the airy condo he has rented for the last couple of years with the help of a federal housing subsidy.

“Right now, I’m proud of myself,” he said, smiling as he patted himself on the back.

Under Social Security’s trial work program, he continues to get his $650 monthly disability payment for his first year on the job. Those checks will end in a few months. And although he can live on his salary, the prospect of no more disability payments gives him pause. “I’m a little scared,” he said.

So is David Cline.

“What if they cut my Social Security disability out? How am I going to live?” said the 59-year-old Montecito Heights nurse.

Found to have AIDS in 1988, Cline took an early retirement four years ago, when his doctors told him he did not have much time left. He collected his pension in a lump sum and lived on it and $1,100 a month in Social Security disability.

Then he started taking protease inhibitors, gained weight and began feeling perky and bored. His house seemed “like a prison.” His pension money was gone. In August, he started part-time work for a home health care agency.

He says that he had been open about having the AIDS virus with his old employer--and always practiced universal precautions to guard against transmission at work. When he interviewed with the home health agency, he was equally candid. “It’s better that they know from the beginning than to find out later,” he said. “My supervisors are very compassionate and understanding.”

Although he has lifetime medical coverage through his retirement plan, he is facing a financial dilemma. He needs the money from his part-time nursing, but doesn’t have the strength to go back to work full time. And if he earns more than $500 a month after the trial work period, his disability may be jeopardized.

“That’s more concern than my health,” he sighed. “It’s money, money, money.”

Robert, a 45-year-old interior designer, has avoided a disability cutoff by taking his pay under the table since he returned to work part time more than a year ago. He’s not sure what will happen if he goes on the books.

“I don’t have a clue,” he said. “I’m hoping as time goes on the path will become a little clearer.”

He now receives combined Social Security and private disability of $2,700 a month--a respectable sum, but a lot less than he earned before he became ill.

“I had to give up a lot, and it hurt,” he said. He sold his West Hollywood house and could no longer live the way he had--or the way his friends still do. He is $60,000 in debt. His credit rating is wrecked.

“Thank God I bought good clothes, because I still wear them,” he adds with a laugh. “God, I hate being poor. I hate it.”

He also hated going to parties and being asked what he did for a living. “You’re stumbling, mumbling. What do you say? ‘I’m retired?’ It’s kind of a sensitive issue.” Back in the interior design world, he says he now has “something legitimate to say.”

Advances in AIDS treatment have not gone unnoticed in disability offices.

In his work counseling clients at AIDS Project Los Angeles, benefits program manager Jacques Chambers says he has seen private disability insurers take a closer look at AIDS cases: examining medical records more carefully, asking claimants about their daily activities and sometimes sending out an adjuster to interview them.

In five cases, Aids Project L.A. clients have been told that their benefits would end because their medical profiles had so improved. Chambers’ staff countered that despite the health gains, their clients were still fatigued and had medical problems. In four cases, the insurer relented. Aids Project L.A. is awaiting a decision in the fifth case.

Similarly, local AIDS organizations know of some people who have lost their Social Security disability because they are doing so well on the new AIDS drugs. But overall, Curtis said, Social Security is not rushing people off the rolls. “They seem to be handling it pretty evenly,” he said.

Between the Social Security Administration’s disability and Supplemental Security Income programs, the agency handles a huge chunk of AIDS-related disability claims, paying a total of $950 million nationally in 1996.

And it is reacting cautiously to the new drugs, said Dr. Susan Daniels, Social Security’s associate commissioner for disability. “This is a very fragile and early stage, and it’s too early to jump right in here and make changes,” she said. “You can harm too many people.”

As it now stands, Social Security offers some accommodations for those returning to work. Disability recipients can continue to receive cash benefits for a year after they go back to work and may retain their eligibility for three more years, as well as their Medicare coverage.

The Supplemental Security program is less generous. In California, cash benefits end when people start earning $1,365 a month. They have to begin paying a share of Medi-Cal coverage when their annual income hits about $23,000.

One of the stickiest situations faces those who had high-paying jobs and then received private disability checks of 60% of their previous income. If they return to the work force full-time and suffer a relapse before becoming eligible for new disability coverage, they would be forced onto the Social Security rolls--and suffer a considerable cut in benefits.

“That was the group that usually lived for their work,” Chambers said. “And they’re the ones who are the most afraid to go back to work. And I don’t blame them.”

Aside from economic and insurance concerns, there are questions of how hospitable the workplace is. People with AIDS and HIV are protected from job discrimination by the Americans With Disabilities Act, but that has not erased concerns.

David Goldstein, who runs a local job placement firm, said that when he asked some companies how open they would be to hiring people coming off AIDS disability, “the feedback I got was generally not very positive.”

Smaller companies in particular, he said, worry that the employee may miss work or go back on disability in a few years, possibly driving up insurance costs.

Chambers says the employer reaction has ranged from warm welcomes to the sort of apprehensive ignorance he remembers from the onset of the AIDS epidemic.

Addressing a group of company risk managers recently, he said he was flabbergasted by their questions about hiring people with AIDS: “Should we warn our other employees? Is the lunch room going to be safe?”

Against that background, Michael keeps a low profile at his new job. But he is nonetheless happy to be there.

“I am so grateful for life now,” he said. “I’m grateful for the job, for protease inhibitors.”

* WORLD AIDS DAY: A virtual march on Washington via the Internet is part of World AIDS Day. A26