By Jake Rossen
By Jesse Marx
By Michelle LeBow
By Alleen Brown
By Maggie LaMaack
By CP Staff
By Jesse Marx
"Obviously, this is wonderful," Kinkler drawls, and tears of joy again appear in his eyes. "I don't think I have ever felt this good and this positive about myself for as long as I have lived."
According to Henry, what happened to Bill Kinkler is not a random miracle. A highly respected member of the local AIDS Research Consortium, with a reputation among his patients for aggressive treatments and compassionate care, Henry was initially skeptical of protease inhibitors, explaining that "when you do this a long time you get disappointed a lot." He'd heard rumors of nasty side effects and resistant viruses connected with the drugs and thought to himself, here we go again. But in January, Henry attended a meeting in Washington, D.C., where the results were announced of a clinical study involving the use of ritonavir on more than a thousand patients from around the world with full-blown AIDS. In terms of clinical improvement and sheer survival, the drug had performed better than anything any of the researchers had seen previously. "As we heard the report, you could tell that a switch was being clicked," Henry says. "Everybody there was imagining what it would be like back home in the clinics. There was a feeling around the room, that things would never be the same."
Ritonavir was approved by the FDA in February, quickly followed by indinavir, which in March received the speediest FDA approval in the agency's history. Unlike saquinavir, the first protease inhibitor approved by the FDA last November, these two drugs are easily absorbed in pill form through a patient's gastrointestinal tract, although a sizable minority of people are not able to tolerate the side effects. In addition, there are indications that resistant viruses to the drugs can develop, particularly in late-stage AIDS patients. Yet, especially when taken in conjunction with older antiviral drugs like AZT and 3TC, protease inhibitors have had a profoundly positive impact in the fight against AIDS.
"It has been an amazing twelve months in the HIV world. I think the protease inhibitors have opened the door to a golden age in anti-viral therapy," Henry says. He estimates that he has prescribed ritonavir or indinavir to approximately 75 or 80 people, and that more than half have had the amount of HIV in the blood, known as a viral load, diminish to the point where it cannot be detected. "The rate at which people are being hospitalized seems to be dropping dramatically; I talk to people from all over the world with access to these drugs and they all tell me the same thing. Of course, the way healthcare works in this country, I'm not making as much money," Henry says with a chuckle, "but that's more than compensated by having people who were morose, depressed, and waiting for the other shoe to drop suddenly start singing in the shower and sending me postcards from where they are taking vacations. A postcard from an AIDS patient who has never travelled, telling me what a good time he is having--that's priceless.
"And Bill, who was ready to die, and then comes into the clinic in a wheelchair one day and says, 'Dr. Henry, I want to show you something,' then shakes my hand with a hand that was paralyzed and stands up, where he couldn't walk before. The issue is no longer can he survive with any quality of life; it is how much can we rehabilitate him. It was unbelievable; I felt like I had died and gone to heaven. For the next five minutes I ran around grabbing other docs who don't even deal with HIV, and said, 'you've got to come see this.'"
However, some AIDS activists say that focusing on dramatic cases like Kinkler's with such unbridled enthusiasm obscures the negative and uncertain aspects of protease inhibitors and fosters destructive false hopes and assumptions among members of the general public. Already there are reports of increasingly risky sexual behavior because people now believe there is a "cure" for AIDS. At the same time, people with AIDS are discovering that friends and relatives automatically assume they are going to get better, a frequently unrealistic optimism that intensifies an already stressful situation. Clinical studies indicate that the immediate side effects of the protease inhibitors, which range from extreme nausea, numbness, and tingling in the body, generally diminish during the first few weeks, but some people simply can't tolerate the drugs, which further saps their spirit and self-esteem. There is also the prohibitive cost of the drugs (which run into the tens of thousands of dollars per year) for people without medical insurance. A daily dosage of up to 20 pills is not uncommon, and studies have shown that it is vital for patients to take them at their appointed times, on an empty stomach if the pills include indinavir, and shortly after a meal if they include ritonavir. Such discipline and dedication is problematic for many AIDS patients.
"The doctors are excited, the media is excited, and family members think they have the answer, but there are still a lot of people out there who are just getting sicker," says Linda Brandt, of the Rural AIDS Action Network, a volunteer organization that supports AIDS patients and their families. "I lost two long-term people with AIDS last week and both had been on protease inhibitors. In a way it is even more devastating if the families are expecting not to lose their loved ones. Before we jump to conclusions, we need to at least wait a year or two and see what happens with these drugs. Because nobody knows right now."