Longer Life for AIDS Patients

By DICK THOMPSON MONTREAL

A new generation of AIDS patients may be on its way. It is a generation of ) hope -- not for a cure anytime soon but for a longer and more productive life despite the disease. One of its heralds is a 30-year-old housewife named Belinda Mason, who was infected with the virus when she received a transfusion of untested blood during delivery of her second child. She lives in Tobinsport, Ind., a heartland town where AIDS services are scarce and discrimination against patients is all too common. Yet Mason, who is chairwoman of the National Association of People with AIDS, is convinced she is witnessing the transformation of the epidemic. Says she: "I think I'm going to be in the first generation to see AIDS become a chronic, manageable illness."

Last week, as 11,000 physicians, scientists and health officials gathered in Montreal for the fifth International Conference on AIDS, evidence was building that Mason could be right. While AIDS is still cutting lives short, early intervention with new drugs is lengthening the time between diagnosis and death and offering the hope that a full life for the disease's victims may some day be possible. Said New York City Health Commissioner Stephen Joseph in Montreal: "We are very close to turning the corner on this epidemic." But there is a price tag to this success. Medical bills for the growing pool of infected people will be staggering. And a surprising number of AIDS-virus carriers are returning to high-risk behavior that could spread the infection to others.

The gloom of AIDS is being eased somewhat by two drugs, AZT and pentamidine. In 1982 less than 30% of gay men diagnosed with AIDS in New York City lived more than 18 months. By 1987, after the introduction of AZT, survival at 18 months jumped to 62.9%. Says Michael Callen, a singer and songwriter who has had the disease for seven years: "We need to change our conception of AIDS. Not everyone dies of AIDS." Today about 70% of all AIDS deaths result from Pneumocystis carinii pneumonia. But studies reported in Montreal confirm that pentamidine inhaled directly into the lungs is dramatically effective in preventing the pneumonia from developing. Federal health officials are so impressed by the drug that they will recommend that those infected with the virus start monthly aerosol treatments as soon as their immune systems begin to weaken.

Like all AIDS care, other drugs showing promise in the lab will be expensive. At typical dosages, AZT costs each patient about $7,000 a year, and pentamidine up to $1,200. Since more than 1 million people in the U.S. are believed to be infected with the virus, the national AIDS medical bill is expected to soar to between $4.5 billion and $8.5 billion a year by 1991. Moreover, the demand for outpatient services, nursing homes and housing for AIDS patients is expected to overwhelm health care systems in the hardest-hit cities.

For researchers the most urgent need may be to regain control of studies being conducted to test the efficacy of various AIDS drugs. Now that doctors have medications that work, they need to find what works best. But for the past several years, experimental drugs have first been available on the AIDS black market, through which patients who felt they had little to lose began their own treatment programs. The FDA, responding to intense public pressure to demonstrate both compassion and efficiency, has established a "fast track" for the approval of AIDS drugs. However, that streamlining may have permanently distorted the traditional protections afforded by careful drug studies. Some scientists are demanding a stop to self-experimentation.

Despite all the progress, the AIDS virus still takes a terrible physical and emotional toll. Each day at New York City's Montefiore Medical Center, women infected with the AIDS virus ask if they can still have children. Patients are told that chances are greater than 1 in 4 that their child would be born with the virus. The prognosis for these children is bleak, especially since they may be orphaned.

As people infected with the AIDS virus live longer, some are drawn back to high-risk behaviors such as unprotected sex or needle sharing, which exposed them to the virus in the first place. Investigators in New York City have found that nearly a third of the intravenous drug users who stopped sharing needles because of the AIDS scare later started again. A study of gay men in Chicago has shown that a quarter of those who had begun to practice safe sex occasionally reverted to unprotected sex. Officials in San Francisco are concerned that these behavioral relapses may soon trigger another increase in new infections.

The new drugs are extending lives, but it is uncertain whether they are adding decades of productive life or merely postponing by a few years the eventual calamity of early death. And many of the lives being lengthened are either dangerous to others or sexually isolated and childless. Says a 27-year- old military officer infected with the virus three years ago: "Meeting / someone to marry is going to be very difficult. And being celibate is not easy for anyone." Still, says Belinda Mason, "every day is a gift."