The grayest heads among us still think of AIDS as a terrible new disease. But younger adults have never known a world without it, and many of the youngest think of it only as an annoying condition you take a pill for. They know nothing of the anguish and heroism that once surrounded the word “AIDS.”
One disease, many perceptions - and in two new books, some surprising truths. Those of us who were there at the beginning are certainly getting ridiculously old, but it turns out that H.I.V. is even older: None of us has known a world without it. The disease is still with us, sparing some communities and devastating others.
As for the terrible two decades that ended the last century, they may be gone, but remembering them will educate even the young and immortal.
In “The Chimp and the River,” the science writer David Quammen reviews decades of efforts to pinpoint the exact origins of H.I.V. Mr. Quammen’s style and story are compelling, particularly because the controversy that has routinely engulfed the science of AIDS extends even to this particular corner.
The first patients with AIDS were identified in the United States around 1980 and were formally reported in the scientific community in 1981. But tests of tissue samples saved over decades show that H.I.V. afflicted some people far earlier, among them a Danish doctor working in Africa in 1977 and a Congolese woman in 1960.
H.I.V. is similar enough to a variety of primate viruses that researchers knew early on that it must have “spilled over” from an animal source. (Mr. Quammen’s book is actually an expanded version of a chapter in his acclaimed 2012 “Spillover,” a look at several such diseases.) How and where H.I.V. spilled over remained unclear for years.
One theory blamed a polio vaccination campaign in the late 1950s, arguing that the vaccine may have been contaminated during its preparation in primate cells, with thousands of Africans infected because of a single careless American scientist. Subsequent data have discredited that idea.
As Mr. Quammen writes, the experts now believe that different strains of H.I.V. spilled over from different primates at different times, the most common and fearsome strain moving from one chimpanzee to one human in Cameroon around 1908.
Mr. Quammen provides a long, fictionalized, utterly gripping story of how that event may have played out, imagining an enterprising young African man paddling down a series of rivers from the bush to the big city, taking his infection with him.
This story clarifies one of the big paradoxes of AIDS: When life expectancy is short for other reasons, a disease like AIDS, with a decade or more between infection and illness, may not gain visible traction in a population. Only in longer living populations do we watch it explode.
That explosion, as it shook New York 20 years ago, is ably described by Dr. Susan Ball, a longtime physician at the Center for Special Studies at NewYork-Presbyterian Hospital, one of the city’s big AIDS centers. Dr. Ball’s “Voices in the Band” brought the bad old days back to me in Technicolor: the waiting rooms full of walking skeletons, splotched and coughing, vanishing forever at regular intervals. Those were the days when you returned to work after a week’s vacation and asked, “Who died?” (Read an excerpt of “Voices in the Band.”)
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Dr. Ball’s book spans the years before and after 1996, the watershed year of the debut of miraculously effective combination treatment - the famous AIDS “cocktail,” which was then composed of a dozen or more pills a day and is now often down to one.
But that triumph has not ended the story; far from it. Good treatment must be taken well, a task far harder than doctors ever really understood before AIDS.
Some of Dr. Ball’s patients had more pressing things to focus on than their pills. Some were so consumed with shame and self-hatred they didn’t consider their lives worth saving. Some proved oddly dependent on being terminally ill and lacked the energy to forge new identities as well people. The scenarios were (and still are) mind-boggling, tragic for individual patients, sometimes even more so for uninfected friends, parents and children.
If anything could undermine the pretensions of modern medicine, it is a disease with no good treatment and an unpredictable downhill course - deterioration punctuated by disaster. That was AIDS in 1992, the year Dr. Ball began working at her clinic. And yet, in one of the other big paradoxes of the disease, those were the days when many medical personnel provided some of the best care in their careers.
All over the country, clinics like Dr. Ball’s were staffed by teams of doctors, nurses, nutritionists, social workers and, often, members of the clergy. The group focus was pain relief, symptom control, short-term problem solving, long-term planning - the pieces of medical care we routinely overlook when we have pills to dispense. Caregivers and patients formed tight little communities, allied against an impossible foe.
When effective treatment showed up, those intense little worlds fell apart. More than any doctor who has written about AIDS, Dr. Ball movingly parses out the mixed emotions accompanying that weird descent from providing transcendent medical care back to doing more ordinary work.
Now we can save our patients; back then, we could care for them. Let the philosophers of medicine explain that one.
By ABIGAIL ZUGER, M.D.