By Alan Prendergast
By Michael Roberts
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Mark Scherzer, a New York City attorney who specializes in insurance issues for those with HIV and AIDS, has encountered another kind of problem with private disability insurers. He represents two clients--an investment banker and a lawyer--whose disability insurers cut off their benefits because the amount of virus in their blood had decreased and their T cell levels had increased. Each of the insurers deemed that Scherzer's clients should return to work. But neither client believed he could return to work and do his job as he used to. After his clients had gone several months without benefits, Scherzer says, he managed to have their benefits reinstated by submitting additional medical documents, detailing how his clients still suffered from fatigue and cognitive problems.
If a person becomes disabled relatively quickly after returning to work and fails to meet the usual pre-existing disability time requirement most group disability plans have, he may be stuck without private disability entirely, says Scherzer.
Still, some argue that getting back to work may be just as important a factor in improving health as taking pills. In January 1996, Sean Wolfe, 34, was literally preparing to die. Diagnosed with full-blown AIDS in August 1994, Wolfe continued to work for another eight months in the payroll department of a Denver real estate management company. By that time, he still felt pretty good but had lost the last of his T cells, which left him defenseless against infection. He also battled increasing fatigue. Wolfe decided to leave work and go on disability, which amounted to roughly half of his income.
By the beginning of 1996, suffering from digestive-tract infections, he had lost 24 pounds, couldn't eat and was wasting away. "My partner and I," he says, "were preparing ourselves for [death], because you know when you hear the words 'home health care' and you have a nurse coming in every day to give you your shot, it just seems like the end."
It wasn't. In March, Wolfe started on Crixivan, a protease inhibitor, along with two other AIDS-fighting drugs. After two or three weeks of side effects, including severe headaches, dizziness, nausea and aching joints, his condition rapidly improved.
The side effects subsided, and one month later Wolfe returned to work. He found a part-time job managing three apartment complexes, with no pay but free rent. By August he had begun working full-time, with pay. At first Wolfe thought he wouldn't have the stamina to keep up with the job--he was afraid that a 22-step staircase at one complex in his charge would prove overwhelming. But since he has been keeping active, Wolfe believes, his health has improved. Now Wolfe claims he feels better than he has in years. Not only is he working full-time, but he also pumps iron two hours a night.
"I was in the mindset that I was going to die...and once I started feeling better, I wasn't thinking about it 24 hours a day," says Wolfe. "I'm someone who needs to be active."
Dr. David Cohn, director of the infectious disease/AIDS clinic at Denver Health Medical Center, couldn't agree more with that point of view.
"I believe that patients have tremendous self-esteem by being able to work and function," says Cohn. "It's a dramatic thing to be looking death in the eye and think 'This disease is going to get me' as opposed to saying 'I can now manage this. These drugs are going to help me. I have a chronic, manageable disease, and I'm going to go back to work.'"
Cohn says the medical community is guardedly optimistic about the combination therapy. Though Wolfe experienced a nearly miraculous recovery, he admits that he is sometimes less than conscientious about taking his medicine regularly and at the recommended times. This, Cohn points out, can weaken the power of the drugs and allow the virus to become resistant to them. Maintaining a drug-therapy regimen can be difficult: In a triple-combination therapy, patients take about twelve to thirteen pills a day in addition to several other drugs to fight and prevent common opportunistic infections associated with HIV, like herpes and pneumonia.
Still, Wolfe is looking forward--planning trips, thinking about the future. He and his partner, who also is HIV-positive and responding well to drug therapy, held a commitment ceremony last October.
"We decided to take a stand and let everyone know--our friends and family--that we're not dead," he says. "We're putting this whole HIV/AIDS thing behind us. We're not denying we have it, but we're not going to let it make all the decisions in our life."
And going back to work, Wolfe says, was one way to do this. "The medicines were working," he adds, "but so was the fact that I could contribute to my life again.