Forced to Make a Choice
Between Job or Insurance,
Many Opt for the Latter
-----
Taking a Carrier's Crawl Test

WASHINGTON -- Wracked with a spinal infection and other AIDS complications, Jeff Bloom quit his job selling expensive audio electronics two years ago and went on long-term disability. Today, with the help of advanced drugs, the 37-year-old Mr. Bloom feels well enough to work again. There's just one problem: If he does, he will lose the $40,000 he gets in disability income each year.

"I've thought a lot about going back to work," Mr. Bloom says. "I like meeting people, and I love the give and take of business. But I ask myself: `Do you want to give up disability -- and find you can't get it back if you need it?'"

Like thousands of other AIDS patients who are benefiting from the new drugs called protease inhibitors, Mr. Bloom is stuck in an insurance quandary. AIDS used to be viewed as a one-way street: When employees became too sick to work, disability insurers would write monthly checks without bothering to monitor those cases any further, convinced that decline was certain. Now, patients and insurers are having to reassess their approach to AIDS disability.

"Disability insurance has been a cocoon of safety," says Paul Hampton Crockett, a Miami lawyer specializing in AIDS issues. "Suddenly it's not so clear that's going to be the case. People who were expected to die are going to be coming back. Nobody is prepared for this."

Across the U.S., AIDS groups are deluged with calls from patients excited, confused or frightened about the prospect of ending disability status and returning to work. In Miami, psychologist Larry Harmon has begun weekly seminars on resume-writing and job interviews for AIDS patients who haven't worked in years. At AIDS Project Los Angeles, counselors field 100 calls each week on return-to-work issues.

The disability dilemma starts in the offices of big private insurers and Social Security, which together pay more than $1.5 billion a year in benefits to about 100,000 people in the U.S. with AIDS and other diseases related to the human immunodeficiency virus. While that is less than 4% of the overall disability market, the promise of the new drugs makes management of AIDS cases especially challenging for policy makers and underwriters.

"In AIDS, something can look like a breakthrough and then fade away in six months," says Ken Nibali, a disability expert in the Social Security Administration. "We have to be careful and responsible about how we look at these things."

Still, Mr. Nibali says Social Security might re-examine -- and tighten -- its disability criteria for AIDS patients if protease inhibitors continue to show such strong results. When taken in combination with older drugs, protease inhibitors have forced down the amount of HIV in many patients' blood to undetectable levels. It still isn't known, however, whether a significant number of patients will eventually develop resistance to the new drugs.

Private insurers such as Unum Corp. say they expect plenty of return-to-work conversations with AIDS policyholders in coming months. Another leading insurer, Fortis Corp., says that at its own discretion, it may offer retraining courses or no-risk trials of a brief re-entry into the work force -- even though such benefits aren't spelled out in its contracts.

"It's in our interests to support any reasonable plan for a return to work," says Mark Andruss, a disability specialist at Fortis.

AIDS patients face a barrage of challenges as they think about rejoining the work force. Job skills sometimes have atrophied. Old careers don't seem fulfilling any more after a brush with death. Potential employers may not want to hire someone with a costly disease, even though federal law bars discrimination against people with AIDS. And without clear knowledge of the new drugs' staying power, some patients fear that a return to work could be premature, leaving them in dire shape if protease inhibitors fail them and they lose their jobs once again.

Software engineer James Carr, 38, shudders to think about the myriad new technologies he must master if he is to resume work. He used to be a star computer programmer, deluged with consulting assignments. Then AIDS forced him to go on long-term disability in 1992.

"I'm going to need new software, new tools, new products" to be a success once more, Mr. Carr says. He estimates that retraining courses will cost $10,000; he is in talks with his disability carrier, Paul Revere Insurance Co., to see if it will help pay the bill. A spokesman for Paul Revere says he can't discuss specific cases, but says such negotiations between beneficiary and insurer would be "typical."

In Florida, a former retailing executive in his 30s, who requested anonymity for fear of losing his sizable disability benefits, says his battle with AIDS has drastically changed his priorities. "I used to have a six-figure income and a job where I put on a suit every day," he says. "But going back to the corporate world isn't what I want to do for the rest of my life."

For now, disability checks of about $100,000 a year leave him free to garden, work out at the gym and socialize. "Every day is a Saturday for me," he explains cheerfully. Protease inhibitors have eradicated nearly all traces of HIV in his blood.

But the former executive says he expects his disability insurer will soon demand that he return to work. His likely response: to set up a landscaping business that would be more fun than his old line of work, but would probably pay a lot less.

Other AIDS patients don't have such rosy choices. In New York, former real-estate broker Cliff Gilbert, 36, recently stopped taking protease inhibitors because of limited effectiveness and nasty side-effects. He has no private disability insurance and struggles to make ends meet with about $1,000 a month in Social Security disability and welfare.

He considered taking a part-time job at a friend's hat-embroidery shop but decided against it, in part for fear of jeopardizing his government benefits, and also because he isn't sure how long his health will hold up. "The biggest downside of this disease is that you stop being a dependable person," he says. "I couldn't be sure that I would be there every day. That's very hard to acknowledge."

In San Francisco, David Lewis, 43, who has qualified for AIDS disability coverage since 1988, is in a similar bind. He gets about $600 a month from Medicare and is draining down some inheritance money to help cover living expenses. He says he wouldn't mind working again if he could get good health insurance. But pay and health benefits are meager in his line of work -- managing small nonprofit organizations. As a result, he volunteers at various nonprofits while collecting disability checks.

"I've spent the past eight years working the insurance system as best I can," he says, complaining that the industry should encourage, rather than penalize, a return to work. "It's a flawed system."

All these tensions play out in Mr. Bloom's life here. Each weekday morning, he packs a leather satchel with small orange vials of medicines that he must take every few hours, including Crixivan, a protease inhibitor made by Merck & Co. Then he walks three blocks from his Dupont Circle apartment to a volunteer job that typifies his professional limbo.

A chatty man with thinning brown hair, Mr. Bloom shows few signs of his disease. He walks comfortably down city streets again, after months when he could barely creep to the end of the block. His appetite has returned, to the point that he frets about signs of a paunch. The combination drug therapy "has given me a second chance at life," Mr. Bloom says. "It isn't something I'd ever expected."

The drugs have battered down the amount of AIDS virus in his blood to 520 particles per milliliter, down from a reading of 166,000 two years ago. His T-cell count, a measure of the strength of his immune system, has rebounded to 135 from a low of 51 two years ago, though that is still below the 200 mark that denotes the onset of AIDS.

In practical terms, however, the restrictions of Mr. Bloom's insurance policies -- and uncertainties about the job market and his medical outlook -- make it very costly for him to stop being disabled. He currently gets annual disability payments of about $13,000 from Social Security and $27,000 from Delphi Financial Group Inc.'s Reliance Standard Life Insurance, with most of it all tax free. The private insurance would cease if he resumed work of any kind, including even a low-paid part-time job.

Not all disability policies are that restrictive. Many insurers actually encourage part-time work by guaranteeing policyholders combined work income and disability benefits equal to 60% of their former income. Without that freedom, however, Mr. Bloom finds his options limited.

He sees little hope of getting his insurer to relax its rules, given the hassles he endured when his doctor in 1994 certified that Mr. Bloom's AIDS condition and severe nerve damage made him "unable to do any work."

The insurer asked one of his doctors to fill out a form specifying how much Mr. Bloom could climb, kneel or crawl. "I wonder what sort of job they would have told me to get if we said I could crawl for eight hours a day," he says. Reliance says the form "was generic and asked questions that mightn't have been pertinent to Mr. Bloom, but would have been appropriate for people with other lines of work, such as repairmen."

For now, Mr. Bloom hovers uneasily on the edges of the productive economy. He is a regular volunteer at AIDS Action, a health-care advocacy organization near his home. He lives more simply, driving a Chevrolet Camaro instead of a Mercedes-Benz and taking vacations in West Virginia instead of Europe. He enjoys more leisure time, occasionally taking a weekday off with his new lover, a young man who is HIV-negative, shopping together for furniture and curios.

Yet Mr. Bloom clearly would like to return to work. When friends talk about career accomplishments and goals, he grows wistful. "For me, work has always been enjoyable," says Mr. Bloom, who got his entrepreneurial start in college selling 5,000 copies of a Stevie Wonder album at the student co-op in a single day, then eventually going on to open several audio-video stores. "When I'm running a meeting I'm in my element. I never felt: Oh God, I have to go to work today."

But his medical history prevents him from qualifying for a new disability policy as an independent worker. His only hope of coverage would be to join a large company that offers generous disability benefits to all its employees.

Like many people who have battled a mortal illness, Mr. Bloom says he would be hard-pressed to go back to his old line of work, selling video cameras, tape editors and other electronics. He and his former boss parted company on strained terms, partly because of a disagreement over Mr. Bloom's final commission checks, partly because of indignation on his boss's part that Mr. Bloom hadn't explained his health problems more candidly as they unfolded.

"Jeff was a very good salesman, but toward the end, I couldn't count on him to come to work," recalls his former boss, Robert Levin, head of an audio-video equipment store in Wheaton, Md. "Not knowing the complete story, I thought he was just sicklier than most." For his part, Mr. Bloom says: "I could do that kind of sales again, but it would be tedious. If I have a finite amount of time left, I'd like to do something more fulfilling."

For the past two years, his volunteer AIDS work has taught him how to capably maneuver through the machinations of Washington politics. This past summer, he helped lead a patient-group coalition that lobbied against Republican efforts to overhaul the Food and Drug Administration, and successfully pressed Congress to increase subsidies to people unable to afford costly AIDS drugs.

Those skills might serve Mr. Bloom well if he pursued a career as a professional lobbyist -- which he would like to do, if only the disability rules would let him. He also worries that the staying power of his drug-cocktail therapy is unknown: it could last for years; it might fail at any time.

"It would make sense, in pure business terms, to let people with AIDS try to work," he adds. "But there has been this expectation that people are just going to die."