Up and Running
Business owner Ron Partridge is feeling pretty good these days, which is a bit surprising. His Internet startup company, Pear Tree Communications, and its showpiece Web site, Gay Colorado Online, are currently sailing the rough waters common to many new online businesses: cash-flow problems, internal conflicts, and a lack of advertisers.
But Partridge seems relaxed, even happy. After all, he never really planned on running his own business. He had stopped working in 1989. Sick with HIV and living off $517 a month in medical-disability insurance, the only thing he planned on was dying. That didn't work out, either.
"I saw the real possibility that I'd be living for another twenty or thirty years as opposed to dying," says the 39-year-old Partridge, who lost his life partner to the virus in 1994.
That's because Partridge is one of a growing number of people with AIDS who, with the help of a powerful new drug therapy, are doing more than merely surviving the virus; they're thriving. The treatment, which includes the much-touted protease inhibitors, has allowed many people with AIDS to leave their sickbeds--deathbeds, in some cases--and pick up where they left off with their lives.
Although drug therapy is not a cure and is too new for scientists to predict its long-term effectiveness, those who have responded well to the drugs have wasted no time in making the most of their renewed health. For a good number of people, including Partridge, that means getting back to work. But lingering health concerns, coupled with financial ones, can make that a tricky proposition.
Partridge, who takes a two-drug combination but not protease inhibitors, shows only the faintest traces of the HIV virus in his bloodstream, while the cells that help him fight infections (T cells) are rebounding. With increased energy and--for perhaps the first time in eight years--a vision of the future, the onetime computer support technician began itching to get back into the daily grind last year.
After a preliminary job search, however, he began to encounter obstacles. Not only were his computer skills out of date, but he wasn't as energetic as he'd once been. And the seven-year gap in his resume didn't exactly thrill prospective employers. (One asked him if he had been in prison.)
In light of these challenges, Partridge decided that starting his own business--particularly one in the new online industry--was the way to go. Being his own boss allows him to develop a flexible schedule. Partridge can work from his apartment if he chooses to, and if he feels run down while he's at his office, he can return home to rest. "I have to be conservative and make sure I don't try to do too many things in one day," says Partridge. Otherwise, depleted energy reserves make him more susceptible to colds and other minor infirmities and hinder his ability to concentrate.
Once things are more stable at Pear Tree, Partridge hopes to work with the Colorado AIDS Project and Emily Griffith Opportunity School to help people infected with HIV get back to work by providing computer and Internet training in a flexible work environment.
That flexibility is crucial for those eager to return to work, according to Rob Humrickhouse, director of Get Back to Work, a nascent program at the Howard Brown Health Center in Chicago that helps people with AIDS re-enter the workforce. Though now only a trickle of people are in this situation, Humrickhouse soon expects a flood--and with it, serious concerns about how to make the transition.
Disability insurance, for example, often poses a problem. People on Social Security disability (SSDI) earn benefits based on the amount that they have paid into the fund through payroll deductions. Those who have not paid enough into the fund receive Supplemental Security Income (SSI), which is paid on the basis of need. But those with disability insurance--public or private--have a limited amount of time they can work before losing their benefits. And if returning to work turns out to be too much of a health burden, those with HIV can, in some cases, lose benefits entirely.
In Colorado, the number of people receiving disability payments due to HIV-related illness is relatively small. By the end of 1995--the most recent figures available--a total of 1,231 people in the state were receiving SSDI benefits because of illness due to infectious and parasitic diseases, the classification under which HIV-related illness falls. Disabled workers received an average benefit of $703.40 a month.
SSDI allows a person to work for no more than twelve months while receiving benefits--a nine-month period of work with a three-month health-evaluation period. Earning more than $200 a month counts as employment. After nine months, if a person is earning a total of $500 a month, the benefits are stopped. In Partridge's case, he is still below the maximum allowable income to be counted against his nine months of earned income because his new business has yet to produce much revenue.
Private disability insurance, however, may not offer a trial period. Depending on the policy, a disabled worker may be cut off from benefits as soon as he goes back to work, even if it's part-time. "It's kind of like having to jump off a cliff as opposed to sticking your toe in the water," says Humrickhouse.
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.
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