San Francisco Examiner - Sunday, Dec. 15, 1996
Lisa M. Krieger

But Kirby, a recovering heroin addict in San Francisco's Tenderloin District, has little money and no refrigerator, so meals are erratic. Once, she lost her medicine in her small, cluttered hotel room. Another time, severely sickened by food poisoning, she couldn't eat.

A successful medical regimen could mean a longer, healthier life; failure could imperil countless others.

Kirby, 47, embodies an emerging ethical dilemma: Who should receive a powerful new combination of anti-viral drugs that restores and prolongs lives - yet threatens to unleash a deadly mutation of the AIDS virus if used improperly?

This life-or-death decision is all the more troubling because it forces doctors to rely not just on science, but also on their best guess about patients' behavior - whether they can cope with stress, alcoholism, drug abuse, homelessness, mental illness, even plain forgetfulness.

"Literally, people who live under bridges, people who are high 24 hours a day, people who are not connected in any way with any part of the mainstream . . . are coming in, saying "I've heard about these new drugs, and I want them,' " said Dr. Barry Zevin, medical director of the Tom Waddell Free Clinic in San Francisco, where 30,000 people are infected with HIV.

"But the fact that they need to keep taking these medicines faithfully, forever - this isn't part of the message they've gotten," he said.

At the center of the issue are effective new drugs called protease inhibitors, which interfere with the multiplication of the AIDS virus. But the 10- to 20-pill-a-day regimen comes with strict rules. One medicine must be taken with meals; another, on an empty stomach. One needs refrigeration; others do not.

If doses are missed or taken improperly, the virus mutates and becomes resistant to the drugs, perhaps creating an untreatable form of AIDS.

"These are fragile drugs, and this is a fragile regimen. It is set up for misuse and failure," warned Dr. Ricardo Alvarez, medical coordinator for Clinica Esperanzo at the Mission Neighborhood Health Center. "The resistance problem is damn real and damn scary."

Improving the odds of success

The dilemma has spawned reaction nationwide from worried doctors:

*In New York City, Beth Israel Hospital restricts who gets the medicines. AIDS patients first must pass a test to prove they understand the drugs' risks and benefits, a process akin to getting a driver's license.

*San Francisco's Health Department doesn't deny treatment, but tries to boost compliance by sending nurses to patients' homes to set up individual treatment schedules. Also, clinics all over the city are developing their own educational materials; at Clinica Esperanzo, for example, doctors teach with pictures and explanations geared at the seventh-grade level.

Wednesday, The City will sponsor a discussion for doctors about use of the therapies in HIV-infected substance abusers who are mentally ill.

*The Los Angeles-based AIDS Healthcare Foundation, the nation's largest community-based HIV medical provider, offers two educational seminars before offering the medicines.

"The issue of predicting adherence is, ethically, a very troubling one," said Dr. Ron Bayer, professor of public health at Columbia University in New York City.

"Clearly, there are patients for whom these drug combinations are just not right, where treatment is clearly inadvisable," he said. "And there are cases where treatment is clearly recommended."

"But what about the cases where it is uncertain?" he asked. "This is a huge "gray zone.' "

The drug combinations have transformed the disease, offering hope where there was none. In many cases, the combinations suppress HIV to undetectable levels, resurrecting patients who were prepared to die. Although the drugs don't help everyone, many who were once bedridden are returning to work, recreation and community service.

But while the benefits are great, so are the risks and responsibilities.

Moreover, the growing complexity of AIDS treatment coincides with the movement of the disease into a more troubled population - people without homes or meals or clocks, who have a tough time sticking to schedules.

For them, the threat of future viral resistance pales in comparison to the struggles of day-to-day life. In some cases, it may be better to offer simple medicines, like the anti-pneumonia drug Septra or the anti-psychotic drug Haldol. And many experts suggest that the $15,000 to $20,000 annual expense of high-tech AIDS drugs would be better spent on food or shelter.

A middle-class problem, too

The failure to stick to medical regimens is not confined to the down and out.

AIDS experts tell of well-educated white men with neatly organized lives who suddenly quit treatments because of side effects, flagging motivation or other factors.

"I could show you a gay white man who works at Bank of America who quits his medication on weekends because he shoots up speed," said Timothy Rodriguez of the San Francisco AIDS Foundation. "That is just as bad - in terms of risk of resistance - as a person with mental health problems who forgets his treatment for a couple days.

"There aren't "good people' and "bad people,' " Rodriguez said. "From a medical standpoint, noncompliance in anyone has exactly the same consequences."

Doctors say that middle-class men with hypertension are notoriously poor patients when it comes to taking medicine on schedule. The average American fails to finish a course of antibiotics as recommended and even exaggerates how often he flosses his teeth.

"Our experience has been that you start out gung ho, then you realize how very hard it is for people," said Zevin of the Tom Waddell Clinic.

Nurse Larry Varela, now program director for Catholic Charities' AIDS residence Leland House and formerly with Visiting Nurses and Hospice, recently made rounds to AIDS patients' homes, hotels and hospices, replenishing pill boxes. When he returned the next week, some boxes would still be full.

Medicine "would be hidden in the drawer, meaning to be taken, but then forgotten," he said. "At the end of the week, there would be a huge pile of pills - most of them protease inhibitors."

Studies show that treatment failure is not linked to gender, income, education, race or ethnicity - but to factors such as depression, stress, sickness or unstable schedules.

There's plenty of precedent for rationing medical care: denying transplants to people who were thought incapable of tolerating immunosuppressive drugs, or denying kidney dialysis to people over age 50 or with other medical problems.

But rationing on social, rather than medical, forecasting is particularly troubling - particularly in a disease as dire and widespread as AIDS.

"No doubt there will be people who don't comply, but I don't know how I could withhold a drug if someone really wanted to try it," said Dr. Peter Cohen, an AIDS doctor at S.F. General Hospital and associate clinical professor of medicine at UC-San Francisco. "I couldn't deny something that could offer someone such a major improvement in their life."

Experts say more creative approaches are needed. Perhaps, doctors could assign "medicine monitors" or hand out food and alarm clocks with medicines. Better housing and drug treatment would help stabilize lives.

"Everyone with HIV should be on these drug combinations," said Dr. Marcus Conant, a longtime AIDS specialist. "The ultimate value to society (of the treatments) is immeasurable: People will live longer, continue to work, and probably will stop transmitting disease.

"But it's up to society to figure out how."

Kirby, who says she's a former opera singer and disco diva whose life took a sharp turn, hardly fits the profile of a perfect patient.

She says she sang backup for Robert Goulet and the onetime disco star Sylvester before life turned sour. She says her band broke up. Sylvester died of AIDS, along with almost all of her friends. She hit bottom emotionally.

Years of drug abuse followed. She lost a job and an apartment. Homeless on Sixth Street, she was diagnosed with AIDS.

Now in methadone maintenance, Kirby says protease inhibitors have provided motivation.

Kirby, who is a transgender - born a man, but living life as a woman - says her morning methadone appointment is followed by a trip to the corner store for yogurt, then her AIDS medicine. When the soap operas come on TV, she's reminded to take her afternoon pills. She takes her evening medicine at bedtime.

Her efforts to comply, although imperfect, seem to be paying off. Levels of virus in her body have plummeted. Her immune system is showing signs of rebound.

"You have to commit your life to it," Kirby said. "I just decided I didn't want to end up being just a poor, dead, drug-addict Tenderloin statistic.

"People underestimate us too much. If people on the street feel they have a chance, that they can make a life, then they'll try."
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