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"It's poorly understood," says Shandera of the tests. "I don't understand it well, and I probably understand it better than most."
Shandera relates a recent experience that proves an attentive physician and carefully kept patient records are just as important as any resistance test. He was trying to determine which drugs to prescribe for a patient, but because he didn't have the patient's chart in front of him, he was able to work off the results of only the man's resistance test. After interpreting the results, he decided to have his nurse call the patient and change the man's medication.
"But first I told the nurse, 'Let's look up his record,' " says Shandera. "In the meantime, the chart came back and we reviewed it, and lo and behold I had had him on that medicine, and he had done worse on that medicine."
Shandera, like Vanek, would like to see the money that might be used on resistance tests spent on other programs, such as prevention, and on studies that try to discover why so many patients aren't diagnosed earlier. While the state's health department has access to the number of newly infected patients only from 1999 on, there has been a slight jump over the past three years in new infections among Hispanics. And according to Shandera, more than half the Hispanic patients diagnosed with HIV at Ben Taub already have full-blown AIDS and don't know it.
"It distresses me to see a test that will be used inappropriately -- especially in the private sphere -- when it's poorly understood, when the money on the state level could be used more effectively on prevention programs," he says.
According to Casey Blass, director of HIV and STD health resources with the state's health department, state funding for prevention "has been level since 1993." Texas spends about $27 million on prevention programs for STDs and HIV, with just over $20 million of that coming from federal funds.
But Texas is a conservative state, says Vanek.
"Nobody wants to talk about prevention in Texas, because if you want to talk about prevention, you have to talk about sex," she says. Vanek, who sees most of her new cases in minority women of childbearing age, believes that state authorities "don't realize how many young people are engaging in extremely risky behavior."
"If we're doing these tests routinely throughout the state," adds Shandera, "I fear that we're going to be faced with exorbitant costs, and we're not going to be positively changing our outcome."
When Shannon Schrader was studying to be a doctor in Kentucky in the mid '80s, he had one lecture on HIV. Medical schools just didn't talk about the disease much back then. Now, nearly 20 years later, Schrader works with about 1,000 HIV-positive patients in Houston and Harris County. Like all doctors who work with HIV, Schrader is constantly attending conferences, reading medical journals and conferring with other physicians to stay on top of the rapidly changing field. He sees indigent patients at the Montrose Clinic and has a private practice of insured patients, including John Termine.
While he acknowledges the tests are expensive, Schrader thinks Medicaid should pay for them. In the long run they might even save the state money.
"It costs more to not approve the test, because you could put someone on a regimen that they're still resistant to, and that person will develop infections and then the state will have to pay for hospitalization, et cetera," says Schrader. And whereas a genotype test can cost about $400 to perform once, keeping a patient on drugs that aren't working can cost the state several thousand dollars a month.
"I'll be honest," he adds. "In every scenario, you don't need a resistance test, because if you know the mutations as a physician and you know your patient's history, you could probably give an educated guess."
But Schrader points out that resistance testing is especially crucial among newly diagnosed patients who have yet to try any medications, and for the advanced patient like Termine where a test might discover what's left that will work.
Dr. Joseph Gathe Jr., who sees the largest number of HIV-positive patients in the Houston area (about 2,500), agrees. He estimates about 15 to 20 percent of his patients are covered through Medicaid. According to Gathe, while the tests have limitations, they will never be improved if they are not used out in the field.
"In 1994, 1995, there was a test called a viral load, which tells us how active HIV is in an individual patient's system," says Gathe. "But when the test first came out, the interpretability wasn't there and the reproducibility wasn't there. We didn't know what the test meant."
But, says Gathe, as the test was used in the medical trenches, the viral load test became better understood and more refined. Now, it's an invaluable tool for any HIV physician. According to Gathe, it's impossible to say if the resistance tests will follow this same model, but the circumstances seem similar to him.
"No matter how technology is used in somebody's laboratory, until you take that technology and put it out here in the real world to see how it fits different populations and different people, you're never going to know how good the test is," he says. "It's a complex situation, but I'm hoping [Medicaid officials] see the light and do the right thing. Without having that test, it would impair our ability to adequately take care of our patients."
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