Fight Against AIDS: Small Triumphs, Sunny Optimism and Grim Reality

TORONTO, Aug. 15 — Bill, Bill and Melinda dropped into our world for a few days here. It was an unsettling experience, much like coming home from work to find Mr. Gates regrouting your bathroom shower, Mr. Clinton fixing that broken window, and Mrs. Gates cheerily watering the plants. Skip to next paragraph Related Complete Coverage: AIDS/H.I.V. Web Links XIV International AIDS Conference Official Site The Joint United Nations Programme on HIV/AIDS (UNAIDS) Famous strangers were suddenly all over our turf, up on the podium at the International AIDS Conference talking with fluent enthusiasm about adherence and second-line drugs, microbicides and pre-exposure prophylaxis. If they can make some order in our house, that’s fine. We can certainly use the help. But have they been warned that the foundation is irremediably cracked and leaking? The old generation of AIDS celebrities now often skips this gigantic biennial event. (Robert Gallo, the co-discoverer of H.I.V., complained to a Toronto newspaper about the “circus” atmosphere and the lack of quality science.)

And so this year’s flashing cameras were aimed not at hostile activists and defensive researchers screaming at one another, but at Mr. Clinton and Mr. and Mrs. Gates. What a pleasant change. This polished threesome may not grasp the more abstruse science of AIDS, but they seem reasonably familiar with the basics. And they are so optimistic as they describe the small triumphs that, thanks to the drugs their money is buying, are now studding the bleak landscape of AIDS in the developing world. Mr. Gates even told us he sees a “happy ending” down the line. It was nice to hear, but those of us who work in the developed world can tell him right now that his project, like the worst nightmare of a home renovation, will not have an end. With our 10-year head start in disbursing AIDS drugs, we have learned many times over that the drugs are just the beginning. Once they are bought and dispensed, the work only gets harder. Side effects and failures are just part of it. Eventually, inevitably, you have to deal with that leaky foundation — the health care system itself. AIDS drugs demand an infrastructure. It has taken this country almost 20 years to cobble the first layer together: a network of people trained to administer drugs and watch for problems.

At its best now, in states like New York, it functions like a smooth machine, delivering freely available medications, all the necessary tests and probably some of the best, most comprehensive AIDS care in the world. Still, the beneficence stretches only so far. And so when patients in our New York clinic need an appendectomy, a cardiac bypass, hernia surgery or a shattered ankle repaired, their wonderful state-sponsored AIDS-specific medical insurance will not pay. For chemotherapy, a new hip, intensive physical therapy, a prolonged psychiatric hospitalization, cataract surgery, a hearing aid or the services of a good podiatrist, we simply have to cross our fingers and send them out into the fractured disaster that is the rest of our health care system and hope for the best. Jackie found a breast lump a few years ago. By the time the mammogram had led to the biopsy and to the oncologist and the surgeon and the radiation and the chemotherapy, months had passed with that excruciating slowness familiar to those who know the scheduling habits of overcrowded Medicaid clinics. If the process had taken a few weeks instead of six months, would she have lived? Bernard never even made it from the neurologist to the neurosurgeon before his brain tumor — a huge one, but not malignant, as it turned out on autopsy — put him into a terminal coma. Charles, never much for medical care to begin with, gave up after a long afternoon’s wait in the cardiology clinic and just went home. A slightly more forgiving system may have saved his life. Every one of them had AIDS which we had managed, with huge effort, to get under perfect control. The same goes for dozens of our other patients who have died from drug addiction or depression or even random urban violence. What a waste, we say, every time. Once you start taking care of people, there is no end.

It takes a real health care system to treat even a single illness; AIDS drugs given without one are, in the end, just very expensive scaffolding. All they do is let people live long enough to need everything else — TB drugs and decongestants, insulin and hemorrhoid creams, cardiac catheterizations and hip replacements, mosquito netting, malaria pills and polio vaccines. Idealists would point out that food and water, housing, jobs, autonomy and civil rights should probably head that list. Can Mr. Gates’s billions really begin to pay for a new world? That’s what it will take for his happy ending.

Abigail Zuger, who writes regularly for The Times, is a physician in Manhattan.

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