By Jeff Balke
By Aaron Reiss
By Angelica Leicht
By Dianna Wray
By Aaron Reiss
By Camilo Smith
By Craig Malisow
By Jeff Balke
Sitting at a table in his bright, sunny new apartment, John Termine invites a visitor to check out his pills. He does this as casually as if he were asking if anyone wanted a beer. They're in the kitchen, he says. In the breadbox.
Inside the white plastic box, there isn't room for even a slice of bread. Instead, Termine has crammed it full of bottle after bottle of prescription drugs and vitamins. It's a dizzying display. In one day, John Termine has to swallow about 50 pills. Some are tiny tablets, others as big as the top of a pinkie finger.
"I used to have some real colorful ones, orange ones," he says almost wistfully as he opens one bottle. "Now they're mostly beige."
They have futuristic-sounding names like Agenerase and Viriad and Vicadex AC. Termine takes them to combat the HIV that has been living inside his body since at least 1987. Seventeen of the pills are supposed to attack the virus; the rest are vitamin and mineral supplements he hopes will enhance his health.
A native of St. Louis and a hair stylist (although lately he has not been feeling well enough to work), Termine lives with his longtime partner, Brett, who is HIV-negative. Although once on Medicaid, Termine is fortunate enough to be covered by Brett's medical insurance, which pays for his pills. The average yearly cost for HIV drugs for a patient is around $20,000. But unfortunately for Termine, many of the prescription pills in the 39-year-old's collection have stopped working.
He has become resistant -- one of the biggest four-letter words in the HIV community.
"You can tell when they stop working, when your viral load goes up," he says. "You get the little skin rashes, fungus on your toenails, thrush in the mouth. You just start feeling little things pop up."
And because he has been positive for so long, he has become resistant to every single HIV medication on the market. Over the years, Termine has tried almost every drug that's become available, a number he conservatively estimates at around 40. And although his doctor has decided to keep Termine on his current regimen for now, Termine's best chance lies in the fall, when new expanded-access drugs (drugs yet to receive U.S. Food and Drug Administration approval) may become available.
Some doctors fear a supervirus, a strain of HIV that will become so powerful no drugs will be able to attack it and win. An upsurge in the number of AIDS deaths could result.
"The general public doesn't know the nuances of having to take pills and the side effects," says Termine's doctor, Shannon Schrader. "The death rate is starting to creep up, and most of us who take care of people in the community, we're seeing the number start to bump up again."
Termine's experience is what some doctors and scientists would call a perfect example of the need for HIV drug-resistance tests. Resistance tests, which appeared on the market in the mid-'90s, help clinicians determine if a patient has developed a resistance to the drugs he or she is taking. Texas's Medicaid program, which covers the largest majority of HIV-positive patients in the state, is one of only five across the country that doesn't pay for these new tests.
Termine thinks that resistance tests should be covered through Medicaid, and he wonders if he would have benefited from the tests if they'd existed when he was first diagnosed.
"I think [if we'd had the tests] we could have stretched some of my drugs out longer," he says. Without resistance tests, his doctors have had to look at his T-cell count and his viral load, and make educated guesses based on his drug history. Doctors who think the new tests should be paid for see them as a gold mine, especially considering the fact that many newly infected patients are already resistant to drugs because they have contracted a drug-resistant strain of HIV.
But not all practitioners who deal with HIV-positive clients are so quick to agree that Medicaid should pay for tests, which rarely deliver clear-cut results. Only one test on the market has received FDA approval, and some doctors consider the expensive test results difficult and confusing to read -- and say if interpreted incorrectly they could do more harm than good. These practitioners worry that the tests may become the wrong standard of care, and that public money would be better spent on reducing the number of new infections. After all, state funding for the prevention of HIV and other sexually transmitted diseases has not increased in almost ten years.
Although Termine knows the arguments, and can sympathize with both sides, right now he's got a new concern in addition to his resistance: In late May, he had several lymph nodes removed. Doctors fear some might be malignant.
"If the tests come back positive, I really have to think about what I want to do," he says. "My little body is pretty worn out."
But as quickly as he admits this, the fighter so clearly inside of this upbeat, extroverted man comes out. He hasn't given in to the virus yet, going so far as to fly to Europe for experimental treatments with human placenta and ozone. The lymph nodes might not be malignant. And as long as he can handle his resistance until there is another drug, he has a chance to extend his life a bit more.