The letters from the insurance company started coming as soon as news about protease inhibitors hit the headlines in the summer of 1996. Addressed to Pete's doctor and arriving at six-week intervals, the letters progressed from general inquiries about lab tests to detailed questions about Pete's physical capabilities: How much weight can he lift with his right arm? His left arm? Can he perform repetitive actions with his hands? How long can he stand? Can he use his feet to operate foot controls?
The aggressive questioning by the insurance company shocked Pete (not his real name). For six years, the same company had provided him with a monthly disability check for $704, asking only that a medical report confirming his AIDS diagnosis be filed biannually. But now the company seemed to be taking a different approach. "It was blatantly obvious they were applying pressure to stop my disability," says Pete, a 36-year-old resident of Charlotte, North Carolina. "I felt a horrible loss of security and a great sense of fear at what might happen to me."
Pete's case is not an isolated one. As more and more people with HIV benefit from new drug treatments, they -- and their insurance companies -- are starting to raise the issue of when and how they might return to work.
Between private insurers and Social Security, an estimated $1.5 billion per year is parceled out to approximately 100,000 people on HIV-related disability. Though this represents less than four percent of all disability payouts, the progress offered by new drugs has changed the way insurance companies look at this slice of the population. Previously, people with HIV were considered to be on a one-way nonstop track of declining health. Once they were classified as disabled, their records were rarely reviewed because it was assumed they would simply continue to deteriorate. Now, that is beginning to change and insurers are confronting the possibility of payouts much longer than anticipated.
Many advocates fear that people with HIV may be forced back to work before they are ready and, in the process, may end up permanently losing important benefits they might not be able to replace. "We're concerned about the premature ejection of people with HIV from disability rolls," says Catherine Hanssens, director of the AIDS Project at the Lambda Legal Defense and Education Fund and POZ columnist. "We're worried that the decisions may be based more on media hype about protease inhibitors than on the reality of a person's health."
There is no definitive guide when it comes to private disability, and that's where the problem arises. Since it is all a matter of contract, definitions of disability vary. Insurers can look at certain blood markers that might not have anything to do with how the person actually feels and determine that they're no longer disabled.
Pete is a prime example: Within months after starting on the protease inhibitor Crixivan (indinavir), his CD4 count more than doubled and his viral load was reduced to an undetectable level. Still, Pete suffered daily bouts of fatigue, intense migraine headaches and recurring episodes of debilitating diarrhea. But as his lab figures improved, so did the pressure from the insurance company. By December, Pete made a bold decision: He enrolled in a nine-week course to train as a travel agent and began looking for a full-time job. "I felt I had no choice," Pete says, noting he would not have been able to survive on the $860 Social Security disability check that was his only other source of income. "I didn't want to get caught with my benefits taken away from me and my pants down."
Elsewhere, that's exactly what's happening. In March, Chicago resident Thom Brown, 43, received a letter from his insurance company informing him that the $1,600 monthly disability check he had been getting since October 1993 would immediately cease. When Brown originally left work four years ago, he was classified as disabled because he could no longer carry out the duties of his job as a manager. However, to continue receiving benefits under the insurance policy, you must remain disabled to the point where you cannot perform any job for your previous employer. After reviewing his medical records, the company decided that Brown's improved health from combination therapy allowed him to return to work in some capacity. Therefore, they told him he was no longer disabled, and his benefits stopped. That left Brown with a monthly income of only $484 that he's been receiving through Social Security disability since last May. "I found out the hard way that private insurance companies can cut you off in an instant," says the former roller skate -- rink manager.
While Brown's appeal with the insurer is under review, he is trying to find work to make ends meet. But after four years out of the job market, re-employment is a huge challenge. "People look at a four-year blank in my résumé and wonder what's going on," he says. Fearing discrimination, Brown is reluctant to tell prospective employers about his HIV status. But with a four-year hole in his job history, most employers will consider him only for an entry-level position. "Those are five-dollar-an-hour jobs," he says. "They'd never pay my bills."
Even if Brown does land a job, he is left with more questions than answers. "Can I handle an eight-hour day?" he asks. "Work is something I really do want, but it's something I'm not sure I can handle yet. What if I have a relapse?" And he wonders if a different company would provide long-term disability to someone they knew had HIV.
He must also weigh how a new job might affect other benefits he is currently receiving. Because Brown is uninsured, he gets his drugs (which cost about $16,000 per year) under a state prescription plan. Eligibility for the plan is dependent on a low-income status. While a good-paying job would cover his living expenses, it might disqualify him from the prescription plan before health benefits from a new job pick up the tab.
Even under the Health Insurance Portability and Accountability Act that went into effect last July (often referred to as the Kennedy-Kassebaum bill) -- devised to help people carry insurance from job to job and not be denied coverage for pre-existing conditions -- Brown could be forced to wait 12 months after getting a job before his new health insurance kicks in. "I can't jeopardize my medicine," he says. "I'm real scared right now. I feel like I'm in a catch-22 situation with no way out."
So far, experts say, only insurers in the private sector are threatening to cut off disability payments to people with HIV. "We're starting to hear about more and more of these cases from private insurance carriers," says Ronda Goldfein, a senior staff attorney at the AIDS Law Project of Pennsylvania. But "Social Security has so far had a hands-off policy" on re-evaluating existing cases, she says.
In fact, with Social Security disability -- as with many private insurance plans -- there are certain incentives that actually help people get back to work slowly while their benefits remain mostly intact. (see "Disability Dish,"). But Goldfein and others warn that if protease inhibitors prove effective over time, Social Security is likely to follow the lead of private insurance in re-evaluating the disability status of people with AIDS. Its rules call for the review of chronic disability situations at least every seven years. "We're waiting for the other shoe to drop," Goldfein says.
Manhattan-based disability lawyer Mark Scherzer says, "The Social Security Administration will eventually catch up, and that's going to create havoc in a lot of people's lives." One of the biggest difficulties, he says, is that the question of disability from AIDS has so far been based entirely on definitions of being sick. There are no real guidelines for when someone is well enough to return to work. "People on new drugs may be getting better, but some will still probably experience chronic health problems," Scherzer points out. "So symptoms are going to be changing from what we recognize today as distinct symptoms of HIV, to more vague ones that are difficult to quantify. That will undoubtedly create some problems."
Excited about their improving health, many people are eager to return to work, even if they are torn about the prospects of financial insecurity. These people are already combining employment with public and private aid to survive. In Baltimore, artist Jon Eikenberg has been piecing together such a livelihood ever since he became disabled nearly four years ago. A self-employed freelance artist for most of his life, Eikenberg did not have a company disability plan to fall back on when he got sick. Between Social Security Disability Insurance and Supplemental Security Income (a benefit for the disabled poor), Eikenberg receives a check each month for $470. But "I've always had to augment my disability check to survive," he says. Fearful that any outside income might decrease his Social Security payment, Eikenberg requests payment in the form of cash or a personal check for his freelance work. "Without my disability check," he says, "I couldn't survive. I'd be out on the street."
Since Eikenberg began taking a cocktail of Crixivan, AZT and 3TC in the winter of 1996, his health has been gradually improving: His CD4 count is up from five to 45, and his viral load, once 450,000, is now undetectable. "After all these years, I'm starting to believe in the idea of having a future," he says.
However, Eikenberg says his current income "is not good enough to build a future. I know my benefits are not going to last forever." Recently, for example, he began receiving help with his rent from a local housing-assistance program for people with extremely low CD4 counts. The housing benefit is up for renewal each year. If his CD4 count continues to climb as it has recently, he will almost surely be ineligible for housing assistance next year. And yet his health is still not good enough for him to work a full-time schedule.
"It's a precarious situation for those of us who are getting better but are not yet well," Eikenberg says. "Our improving health is oddly the very thing that poses a risk to our financial well-being." He is adamant, however, that for him, the boost he gets from working is worth any financial risks. "I'm feeling a little better physically," he says, "but I'm feeling a whole lot better mentally."
This is a common sentiment among people with AIDS who have been out of work and now see a chance to return to jobs they enjoy. When actor Robert C. Torri landed a seven-week part in a musical in St. Louis this summer, his actor's union in Chicago made him return its $300 disability checks for July and August. "If I get to a point where I'm working too much and they take me off disability altogether, that will have to be OK," he says cheerfully. "I'm doing the things I like and being optimistic."
Back in North Carolina, Pete finally gets a verdict from his insurance company: He is still confirmed disabled. His benefits can continue. But meanwhile, convinced he was about to lose his disability, Pete had started working full-time. He is now faced with the dilemma of choosing between disability benefits and employment.
Pete feels that the physical and emotional strain of the job is adversely affecting his health: Since he began work, his viral load has risen from undetectable to about 8,000. On the other hand, he can't help but wonder when the insurance company might threaten his benefits once again. Without a backup job, he could be left with almost no income. "I feel angry and frustrated at the whole situation," he says. "I don't know what to do."