The Patients’ Side of the Story

At the 14th International AIDS Conference last week in Barcelona, Spain, a leading expert on the disease said everyone with HIV had “the chance for a normal life.”

This unbridled optimism pervades every level of medical care for the disease, from the top doctors who jet around to international AIDS meetings like these to the hospital resident on rounds in the AIDS ward, where young interns are now more afraid of contracting hepatitis C from needle jabs than HIV because “at least you can treat HIV,” as one recently told me.

This new confidence, born in large measure from a spate of encouraging news that powerful new classes of AIDS medications are close at hand, was very much in evidence at this year’s AIDS conference. Much of the buzz stemmed from a radically new class of drugs called fusion inhibitors. Unlike the 16 previously approved AIDS drugs, which attack the virus after it enters human cells, fusion inhibitors erect a barrier outside cells, preventing HIV from getting inside. If the virus cannot invade or “fuse” with a cell, it cannot reproduce.

Fusion inhibitors, the first of which could be on the market in about a year, are a significant breakthrough because they provide another treatment option for HIV and AIDS patients who have grown resistant to existing drug combinations. The results of two large studies unveiled at the conference showed the most advanced of these new drugs, dubbed T-20, is a potent killer of the virus, especially strains that had become resistant to all the other medicines.

This has been welcome news to those suffering from AIDS. Nearly a million people in the United States are estimated to be infected with HIV, with about 400,000 receiving some form of treatment. And since a recent study from the University of Alabama showed that the average patient becomes resistant to front-line therapy within 16 months, and to second-line therapy in less than a year, T-20 is going to fill an important need.

But amid all the optimism, it’s important to keep one thing in mind: Life on today’s antiretroviral therapy is anything but “normal.” From AZT to protease inhibitors, all the drugs that patients with HIV take have awful side effects. Those taking them become nauseated and weak. Many describe it as constantly feeling as though they have the flu. The drugs also have long-term complications, causing everything from premature bone loss to heart disease. My own prescription of a week’s worth of antiretroviral therapy after an on-the-job needle jab (the patient ultimately tested negative for HIV) left me sick to my stomach and unable to work.

In clinical trials, T-20 has been relatively “clean,” devoid of the nagging side effects that plague some of the other treatments. But even T-20 needs to be injected twice daily--much the same way insulin is taken by many diabetics. This is inconvenient, not to mention painful. And it is anything but normal.

The disconnect between a patient’s experiences with the treatments they are prescribed and a doctor’s unbridled confidence in the drugs stems from a measure of inexperience with what a patient’s life is about. Every doctor is guilty of falling into this deception. In the hospital, many of my colleagues would not know how to set up the tap water enemas they routinely order. Few know how to properly insert a rectal tube. The work schedule is so hectic that few doctors can find time to administer these things themselves. Regardless of the reason, the end result is that most doctors not only don’t experience the hardships and indecencies their prescriptions bring; they also don’t witness patients experiencing them.

What is often lost on us is that patients suffer not only from their disease but also from the treatment. A recent survey found that many patients failed to properly take their medication because they could not make sense of the instructions their doctors had given them. Few drug regimens are as grueling as that for AIDS, which can require 20 pills a day. One medicine must be taken with meals; another, on an empty stomach. One needs refrigeration; others do not. If patients miss doses or vomit up the pills , the virus can mutate and drug resistance can develop. The protease inhibitors cause some patients to get skinny arms and legs, distended stomachs and fat deposits called “buffalo humps” on the upper back.

HIV treatments like T-20 and all the drugs that preceded it are a miracle for many, and the pace of progress that has been made on this disease will stand as one of the great achievements of the drug industry. But the disease is far from cured. The glowing accounts of wondrous drugs send exactly the wrong message, instilling in most people a false sense that AIDS is essentially a conquered disease. It should be of little surprise that there has been a surge in such risky behavior as unprotected sex and needle-sharing and a corresponding increase in new HIV infections.

One past study by the CDC found that more than 30% of those at high risk for contracting HIV said they were less concerned about AIDS than they had been and were therefore less likely to take precautions. Many study participants ascribed their renewed risk-taking to a growing confidence that a cure was close at hand. It is a confidence bred of false optimism.

Doctors can project confidence not only because they remember an awful past before antiretroviral drugs were available, but also because many cannot understand what a life on this therapy--or simply with a chronic disease--is like. Most doctors treating AIDS are young and healthy. Their days as patients are far off.

Or are they? In the movie “The Doctor,” William Hurt plays a detached surgeon making neat incisions and small talk with his patients, until his chronic cough turns out to be throat cancer. After winding through the hardships and indecencies that he so easily subjects his own patients to, he learns how scary, humiliating and infuriating it can be to be a patient.

When he finally returns to his work after being cured of the disease, he tells all the medical residents who make rounds with him that they must spend a weekend as a patient, complete with enemas, bedpans, gauche hospital gowns and plenty of injections. That way they will understand their prescription pads from the patient’s perspective. This sort of training probably violated some work rules somewhere, but it is an interesting beginning.