Many of Steve Thompson’s toughest battles in his 10-year struggle with AIDS have not been waged against the virus itself.
They’ve been fought against the maze of paperwork, social service agencies and drug companies he must navigate to get the medication he needs.
With mounting prescription bills and no way to pay for them, the LaSalle, Mich., sufferer has struggled against being a burden to his family. At one point, he considered giving up on drug treatment because he saw no way to afford it.
He has encountered caseworkers so bogged down with paperwork they’re clueless about the latest programs. He has dealt with pharmacists who know little about drugs to treat HIV and AIDS.
Such roadblocks aren’t just minor annoyances to someone living with AIDS, he says. With new drugs and programs available each month, getting snagged in red tape is a life-threatening situation.
Thompson’s message is simple: Empower yourself, because no one’s going to do it for you. In the decade he has lived with the virus, he has discovered a multitude of state and federal programs that can whittle $25,000 in yearly drug bills down to nothing.
“If you don’t do it, it will become a matter of life and death,” he says. “So many people get depressed, and they want somebody else to do it for them. They have to be involved in the epidemic instead of being a victim of the epidemic.”
Sick of having his questions met with “I don’t know” and “We’ll call you back later,” Thompson, 35, went on the search for his own answers.
He joined his city’s AIDS organization. Then the county consortium. Then the state board.
Through his work, he has counseled other people with AIDS about how to maneuver their way through bureaucracy. He has helped devise a system of standardized AIDS care that hospitals and social service agencies now follow.
Last month, he attended the 11th International Conference on AIDS in Vancouver, British Columbia, bringing back three enormous cardboard boxes filled with information for his community.
Thompson attributes much of his long-term survival to knowledge.
“I’ve been one of the lucky ones,” he says. “But I’m only lucky because I’ve empowered myself to do that.”
He urges other people with AIDS not to view the diagnosis as a death sentence.
They shouldn’t run away. They shouldn’t quit their jobs. They shouldn’t abandon their families.
Seek an advocate or a case worker, he says, who can help you find ways to pay for medication. Call your local health department or HIV and AIDS organizations for information. Look for pharmacists who will take the time to listen.
“People still don’t know that if you have HIV or AIDS, you should be able to get every drug, one way or another,” he says. “People give up–they don’t take the drugs. Some people want someone to do it for them. It’s as simple as a phone call, if you know where to call.”
Thompson is one of a growing number of AIDS patients taking protease inhibitors, a new family of drugs approved within the last six months. Doctors and researchers at last month’s AIDS conference heralded them as a possible step in making AIDS a chronic, rather than a fatal, disease.
But the new drugs carry a high price tag. Like Thompson, many patients are paying anywhere from $2,000 to $6,000 per month to get the myriad medications they need to slow the virus and stave off infection.
The 40 pills and assortment of creams Thompson uses add up to $2,000 a month.
“Those are my miracle pills,” he says, pointing to his array of bottles, vials and tubes. “This is what will keep you alive. I guarantee you: Take those away from me, and I’d be dead in six months.”
Since he began taking a three-drug cocktail of AZT, 3TC and Crixivan, one of the new protease inhibitors, Thompson’s t-cell count–a measure of the health of the body’s immune system–has skyrocketed from three to nearly 200. He has gained 20 pounds. His viral load, which measures the amount of virus in the body, has dropped from 260,000 to 16,000. As far as AIDS patients go, Thompson has been lucky. He has never been hospitalized because of the disease. He has suffered only a few minor infections.
To look at him, you’d never know that the robust man with intense brown eyes and a mop of curly hair has been living with AIDS for a decade.
In 1984 Thompson was working as a restaurant manager in Monroe, Mich. He says he always had safe sex and didn’t worry about contracting AIDS.
On a whim, he decided to get tested.
When the results came back positive, he sold nearly everything he owned and left a note telling his parents he had AIDS. He packed up his car and drove because he wanted to spare his family the pain of watching him die.
He didn’t talk to family or friends for six months until he landed in a hospital in Virginia, sicker than he’d ever been in his life. He thought he was dying.
With his parents at his hospital bed, Thompson was told he didn’t have HIV; he had hepatitis.
But he had this nagging lump on his neck, an inflamed lymph node that just wouldn’t disappear. In 1986 he got tested again. This time, doctors were certain he had HIV.
He packed up his car one more time. But he didn’t run away. He came home.
Faced with $2,000 bills for medication each month, Thompson didn’t know what to do. Because he was working and living with his parents, he was told, he made too much money to qualify for Medicaid.
He considered refusing to take his medication because he could not pay for it. Eventually, he had to give up work so he could qualify for state assistance.
“It’s the worst thing in the world to have to quit work,” he says. “I felt useless, like my whole life was different in every way. That was one of the worst times in my life. You have to give up your job and be poor for them to help.
“But what I do now is a job. I just don’t get paid. My rewards are from the heart.”
