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"I don't feel hopeless," he says. "In the back of my mind, I think there's going to be something else. If I was hopeless, I would have given up a long time ago."
In the 1980s, the image of HIV was a terrifying one. If someone said "AIDS," pictures of frighteningly thin young people covered in purple Kaposi's sarcoma lesions came to mind. But with the advent of powerful protease inhibitors in the mid-'90s, the lay public developed a different picture of the dread disease. A 1996 Newsweek cover story almost giddily asked, "The End of AIDS?" Death rates fell, lives were extended, Magic Johnson declared his viral load undetectable.
The portrait of HIV became one of a chronic, manageable illness, like diabetes.
But the fanfare welcoming the new drugs masked the difficulties of taking them properly. The protease inhibitors, like all HIV medications, were expensive, had to be taken several times a day under a variety of specific circumstances and caused all sorts of short- and long-term side effects -- some serious, others merely nuisances. Numbness, diarrhea, nausea, cardiovascular illness and elevated triglyceride levels are just a few of the symptoms people such as John Termine had to accept in a trade-off for a longer life span.
"Most people who are on drugs and are HIV-positive are not very open about what they're going through," says Joel Martinez, director of The Center for AIDS, a privately funded organization in Montrose that works to educate HIV-positive people about treatment options. "People don't have the outward manifestations of the disease they once had. [But] they're not going to say, 'I've had diarrhea for six months, I'm fatigued every day.' They're not going to admit it."
In addition to the nasty side effects, fitting the drugs into a daily schedule is a task best suited for Sisyphus. Some drugs need to be taken with a gallon of water a day, some with food, others with no food. Some pills need to be refrigerated, others don't. Martinez cites studies that show even doctors and nurses often forget to finish a ten-day dose of antibiotics, yet it's expected that HIV-positive patients stick to a strict regimen for their whole lives.
So what's wrong with not complying? By not taking the drugs exactly when and how they're supposed to, HIV-positive patients increase their risk for growing resistant to them. A vicious virus, HIV reproduces rapidly inside the body. The more the virus multiplies, the greater the odds are that mutations -- changes in the virus's genes -- will appear. While some of these mutations are harmless, others are resistant to the drugs. If too many doses of the drugs are missed, the virus multiplies at a faster pace and more mutations appear, decreasing the odds that the drugs will have a beneficial effect on the body.
And as Martinez points out, even strict adherence does not necessarily mean a person will not develop resistance to certain drugs. Genetic predispositions, drug absorption problems and plain bad luck all can play a role in causing a person's HIV to develop mutations that are resistant. And as if there weren't enough to worry about, studies show an increase in the transmission of drug-resistant strains among newly infected people, especially in urban areas such as Houston, meaning that people who haven't even discovered their HIV status yet are already resistant to several drugs.
With those concerns in mind, and after urging from health care practitioners across the state, Texas's Medicaid program seems to be moving in the direction of paying for drug-resistance tests. John Hellerstedt, medical director of the Medicaid/CHIP (Children's Health Insurance Program) division, a part of the state's Health and Human Services Commission, says that Texas hasn't been unduly slow in approving the tests. It just wants to be sure the tests are worth the state's money.
"We always have to be good stewards of public funds," says Hellerstedt. "We want to make sure our policy guides people appropriately."
According to Hellerstedt, the program's medical policy committee began debating whether to pay for the tests in January, and is in the process of determining exactly what guidelines they should recommend to the senior staff of the commission. Financial impact estimates are also being drawn up. With commission approval, Medicaid may start paying for tests this summer.
There are two resistance tests available, and they are performed by a wide variety of labs across the country. Genotype tests examine the HIV virus taken from the patient, checking for certain mutations that have been linked with drug resistance. They cost $300 to $500, and doctors get the results within a few days. The more complicated phenotype tests determine which drugs can stop the virus from growing. These tests also are more expensive, costing between $700 and $1,000. Results take anywhere from two weeks to a month. At present, Texas's Medicaid program is considering paying for only genotype tests.
"I've heard that even big states have found there isn't a lot of demand for [genotype] tests," says Hellerstedt, who adds that he can't estimate what the tests might cost the state. (In Texas, Medicaid's total budget for September 1, 2001, until August 31, 2003, is $25.2 billion.)