The dilemmas of life with AIDS since protease inhibitors.
By Maureen Zent
JULY 28, 1997: When Cyndy Archuletta learned she was HIV positive five years ago, she prepared to die. She had a will drawn up. She made a "living will" detailing her wishes, should she become incapacitated. She gave up her home and moved in with her mother and brother so her children would not be alone if something happened to her.
"I'm a fighter, not a quitter. But there was that part of me that had learned to accept that this was going to be the ultimate thing. I didn't figure it would be long," she says matter-of-factly.
Then, in February of this year, Cyndy's outlook changed. She began a course of medications that included one of the new anti-viral drugs called protease inhibitors. Quickly, the viral count in her blood dropped and she felt better than she had in years. Now her life expectancy is indefinite. Yet, like many people taking protease inhibitors, she faces a whole new set of problems.
Protease inhibitors work by inhibiting one of the enzyme systems of the HIV virus, dramatically cutting the concentration of the virus in the blood. The medications were rushed through the FDA process and first brought on the market a year-and-a-half ago.
For all the benefits, though, protease inhibitors have complicated life for people with AIDS. Only about one third of them can take the drugs successfully, according to Dr. Kristen Ries, an infectious disease specialist in HIV/AIDS for the University of Utah Hospital. Another third can't tolerate the side-effects and the last third fail at the demanding pill-taking regimen. So most people with AIDS have been left unaffected by this breakthrough.
Patients who can take protease inhibitors often suffer side-effects. The long-term effects and prognosis are uncertain since the drugs were expedited to the market. A few forgotten doses of the medicine can result in severe consequences. The exorbitant cost of protease inhibitors present a financial Catch-22 for people on Social Security. Finally, individuals who had accepted their deaths are having difficulty adjusting to the idea that they will live.
In first encountering Cyndy, age 40, she appears to be a pleasant suburban mom more likely to compare Little League stats than t-cell counts. After growing up in Salt Lake City, Cyndy and her husband moved to Southern California, attracted by a better job market. Soon thereafter she discovered she was expecting her daughter Amber.
Due to complications in her pregnancy, Cyndy had a blood transfusion, unaware that the blood carried the HIV virus. This was 1983 and, although tests for HIV existed, blood banks were not yet routinely screening their supplies.
By 1986 when Cyndy was considering getting pregnant again, she had a greater awareness about the causes of AIDS and asked her doctor about her transfusion. He insisted she couldn't have contracted the virus and refused to test her. The next year she gave birth to her son Bryan.
By 1988, Cyndy and her husband had tired of California. Cyndy missed her family in Utah and wanted to buy a decent home, but couldn't afford Los Angeles prices. Back in Salt Lake City she took a job in her mother's medical billing business. But then her marriage dissolved. She and her husband separated in the fall of 1991 and they divorced the following spring. When 5-year-old Bryan became sick a few months later, the doctors discovered he had AIDS.
"Of course, the likely reason was because of me and because of the transfusion I'd had," says Cyndy. The rest of the family was tested. Though Cyndy's daughter and ex-husband were free of the virus, she was diagnosed HIV-positive.
"I'd had symptoms but I just figured it was fatigue. I was a single mother trying to work and take care of two kids," she recalls. "Emotionally I was devastated at first. It felt like a death sentence."
Cyndy couldn't send Bryan back to day-care where he'd be exposed to the range of childhood illnesses. So she had to quit her job to take care of him. The timing couldn't have been worse.
"I wasn't in great shape financially. I'd just been through a divorce." She explained that her ex-husband had financial problems, which caused her to be in bad debt.
Her family helped her through this period. Still, she lost her savings and her own home. Then, in September 1994, a family outing to a water park proved deadly. A week later, at almost the exact same hour, she and Bryan fell ill from the water-borne protozoan cryptosporidium. They became very sick. Cyndy succeeded in beating the parasite. But Bryan didn't. He died four months later.
Through 1996, Cyndy battled serious problems including neurological and liver damage, and she had trouble walking. She fought her way back to health, and in February 1997 she started taking a medley of drugs, including the protease inhibitor Crixovan. The viral load in her blood now has dropped to the point where it cannot be accurately counted.
Following her daily drug therapy of 10 medicines in 27 pills hasn't been easy. She must take medication at 7:30 a.m., 10 a.m., 3:30 p.m., 6-7 p.m., 10 p.m., and 11:30 p.m. The protease inhibitor must be taken on an empty stomach at precise eight-hour intervals. If she misses a dose, the virus can quickly mutate and become resistant to the drugs. So, while the medicines keep the virus at bay, it lurks in the blood like an unsleeping enemy always waiting for the carrier to slip up.
While Cyndy feels better overall, she's had side-effects, including nausea and severe gas. She still has days of great fatigue, and the nerve damage suffered before going on the treatment has not disappeared.
On the financial front, Cyndy's situation has become more precarious. After getting diagnosed in 1992, she found that her insurance was inadequate for covering AIDS. When she left her job and went on disability, she qualified for Medicare but it doesn't cover out-patient medications. Her current drug therapy costs about $1,500 a month.
Another option is Medicaid, the federal-state health insurance for low-income people. But getting Medicaid would require relinquishing most of her income and electing a life of poverty. With $1,124 a month Social Security for her daughter and herself, Cyndy is hardly flush. Yet her benefit is relatively high because she'd paid a lot into the fund. "I started working at 15 and I'd never not worked after that. Even when I was going to school, I worked two jobs."
When her husband lost all their money, Cyndy took on extra jobs.
As far as Medicaid is concerned, Cyndy's solid employment history makes her worse off than if she'd never worked at all. She can only get the Medicaid drug benefit by doing what's called spend-down, a program of Rube Goldberg-logic and complexity: Anyone at the poverty level can automatically qualify for Medicaid. But if you make $1 more, you must surrender to the state any income that's above 133.3 percent of a state's welfare payments, or else come up with equivalent medical expenses. The welfare payments are lower than poverty rates and, in Utah, are set substantially lower than in some other states. Effectively, you must reduce your income to 40 to 45 percent below the official poverty level.
For Cyndy, the upshot of spend-down means trying to live on about $400 a month. "We're in a position where we're choosing whether we want a life of poverty, or life, period," she lamented. So far she's been able to avoid that choice. She gets some medications through the pharmaceutical companies' indigent programs. But she must reapply every three months and worries that someday they'll reject her application.
Like Cyndy, Michael, age 33, is willing to make sacrifices to stay on protease inhibitors. Currently he juggles three jobs: A cleaning service he runs, and two retail positions. "Somebody has to pay for all of this," he says.
As a gay man in a stable relationship, he was shocked to discover he had AIDS. After growing up in Ogden, he'd moved to Salt Lake City 15 years ago to live with his partner. In a 1983 car accident he was thrown through the windshield and later had a blood transfusion. Unaware that he'd contracted the virus from the donated blood, he was healthy for years.
"I would have never suspected. I went in for a physical. My glands were swollen and that was my sign. But I put it on the back burner."
Michael says he was diagnosed HIV-positive in 1990. "My world crashed. I lost a lot of friends when I started telling people. People were afraid."
Right after learning he had AIDS, Michael prepared for his own death. He paid for a funeral and cremation. And he picked out an urn.
He was able to work steadily until, like Cyndy, he had a bad bout with cryptosporidium. "I was off work for almost six weeks. Literally, I just laid on the couch." He recovered, but his immune system was still compromised.
Then, in 1995, he entered a study of a triple-drug-combination therapy, including a protease inhibitor. His t-cell level rose and so did his energy. "I started doing more and I thought, how interesting!" While he's tried to be consistent in following the drug regimen, he's missed a few doses along the way. "I have forgotten and then it's like 'Oh my god! My pills!' I'm so afraid of building up a resistance." Now he carries a timer with him. For a period last January he stopped taking the drugs altogether. He was splitting up with his partner and had a bout of severe depression that made it difficult for him to get out of bed. Luckily, he was later able to resume his treatment without problems.
Besides paying off his debt, Michael buys his own insurance through Utah's HIP program, a health-insurance pool for non-insurable people. Every three months he must come up with $760 for the premium. His drug deductible is $500 and he must cover 20 percent of all medical expenses. "I don't want anybody to have to take care of me and I have the ability to do it myself and I am very determined to do it," he asserts.
His experience with protease inhibitors has taken a toll, though. "I'm going through a whole other grieving process because now I'm going to live. I grieved before because I was going to die. I made all these plans."
The medical, financial and social problems experienced by Cyndy and Michael face many people using protease inhibitors. From a medical standpoint, the medications have transformed AIDS. "They have changed the whole epidemic for the moment. The death rate is way down. They are truly a wonder drug," Dr. Ries says, then quickly adds, "But not for everybody."
In prescribing protease inhibitors, Dr. Ries says that complying with the demanding drug regimen is a large problem. The patients who succeed at the daily schedule tend to be obsessive/compulsive types. As Maggie Snyder, a physician's assistant who works with Dr. Ries, notes: "How many people stop taking their antibiotics as soon as they start feeling better?"
If protease inhibitors are not taken absolutely consistently, the virus can mutate and become resistant to drugs. Then, not only will the patients risk losing effective treatments but they could potentially spread the resistant strains. "We now have people coming in who are newly infected and are already resistant. So the proteases won't help them," Dr. Ries says.
Since the drugs were hurried through the FDA process, no one knows what their long-term side-effects will be, if any. "The people taking protease inhibitors are kind of an extended study," says Don Austin, a clinical social worker who provides therapy for people with HIV/AIDS.
Austin believes the medical uncertainty of protease inhibitors creates emotional turmoil. "There's not anything that's certain and that's really frustrating when you're trying to plan." Before the new medications, death was predictable, but now everything is open-ended and that can be disconcerting.
For people whose health improves so much that they feel able to go back to work, there are other anxieties: As they look for a job, how will they explain that five-year gap on their resumÄ? With the stigma on AIDS, how will they be able to take their pills without revealing their medical conditions? And, since they don't know what to expect long-term, what if they get sick again, lose their jobs and no longer have medical coverage?
Obtaining and maintaining coverage for drug benefits is a huge concern for people taking protease inhibitors. With annual costs running around $15,000-18,000 and more, almost no one can afford to pay out-of-pocket. Common coverage is through insurance paid by employers, buying their own insurance and Medicaid for people with very low to no income.
Another source is the federal Ryan White Care Act, through which funds are made available in each state to pay for AIDS treatments. But to qualify for Ryan White money, you can't be eligible for Medicaid. Often the beneficiaries are uninsured working people.
A large number of people with AIDS fall into the group that has no choice except Medicaid spend-down. They live on Social Security checks and have too little income to buy their own insurance and too much to automatically qualify for Medicaid. Their quandary is that to stay alive, they must live at starvation levels.
"I think AIDS is more a disease of poverty than anything," says Jeff Workman, director of the People With AIDS Coalition. "You see those people who had great jobs being forced to spend-down. Now they're forced to take charity."
While protease inhibitors have slowed the death rate, a number of people choose not to take them. Some just don't trust the medicines. Others balk at the life of poverty required by Medicaid spend-down.
"There's no way I can fork up the money for pills," says Kevin McMullin, age 44.
A Salt Lake City native, Kevin grew up in what he describes as a very Mormon family. Though he says he'd known he was gay all his life, he married young and had two children. When he eventually split with his wife in the late '70s, he headed to California. "I decided, 'Hey, man, go make yourself happy and find out who you are.' And there was no damned way back then that you could find out anything in Salt Lake City."
Somewhere, somehow, through gay sex, he contracted the HIV virus in California. After being diagnosed positive in 1987, Kevin had a light case of pneumocystis, a common ailment among people with compromised immune systems. Otherwise his health was good.
Kevin worked steadily driving tank trucks delivering gasoline. Preparing for the worst, he asked his doctor to "let me know when things are getting close." He wanted to visit his parents, whom he hadn't seen in several years. Kevin's t-cell count eventually fell to the 200 mark, part of the CDC's medical definition of AIDS. At that point his doctor told him, "If you're going to go, you better go now."
So he quit his job and moved home to Utah three years ago. His family was shaken by the news of his HIV-positive status but have been supportive. Last year, he volunteered for a study group of the protease inhibitor Virocept. His t-cells rose and his viral-load fell, but he had terrible side-effects from the drug. Every morning he felt sick. He stayed in the study for four months, until he finally decided to leave it. "I want to enjoy what time I have left and not be sick every day. When I die, I die."
Since dropping out of the study, he describes his health as a "day-to-day thing." Sometimes he's so fatigued it hurts to walk. He's also suffering from dementia, which makes him lose his train of thought mid-sentence. He's chosen to give up driving because of the dementia and now relies on his father for rides to medical appointments. His viral load has soared to more than 300,000 and his t-cell count has slipped to 160.
When asked about friends who have died from AIDS, Kevin dumps the contents of a plastic tub on his coffee table. Every time someone he knew died he'd make a little red ribbon with their name on it. The heap of red ribbons on the table represents all the friends who'd passed away.
Kevin says that despite his bad side-effects with Viracept, he'd try a different protease inhibitor. His only means to get the drugs, however, is through Medicaid spend-down, a choice Kevin refuses to make. His monthly Social Security Income is $803, and after spending down, he says he'd only have about $400 to pay rent, utilities and other living expenses. "So I decided to forget it. I either have money and live decent or I take pills."
Protease inhibitors may have changed the AIDS picture but they are not the ultimate solution, Dr. Ries believes. "A vaccine is the answer. The epidemic will never be squelched without it." But while the world waits for a cure, Dr. Ries predicts that the most likely next step will be once-a-day therapies. So, for many people, the epidemic continues as before; while for others, AIDS has transformed into another kind of beast.
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