My life in books

How to Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS by David France is at once a personal recollection and a journalistic history of the AIDS epidemic in the US and the struggles of gay activists to force government and institutions to mobilise efforts and resources to combat the disease.

France, a journalist and gay man who lived through and reported on the issues as they happened, deftly portrays both the sluggish and at times callous response from the medical establishment and government agencies and officials, and the dedication and unrelenting activism of the gay community. His scope covers both the events and the people involved in identifying and fighting the disease from its earliest days, presenting vibrant portraits of the doctors, patients and activists as he unfolds the story of the epidemic's growth.

France's book looks at the work of doctors outside the establishment agencies - the CDC and the NIH - who, often gay themselves, or working with predominantly gay men in their practices, saw the early signs of the epidemic. Even before the first cases of Kaposi's sarcoma and PCP, doctors were noticing unique health concerns among gay men. One such doctor, Joe Sonnabend, who volunteered at the Gay Men's Health Project as well as having a private practice which was centred on treatment if venereal diseases, had seen anomalous medical problems in gay men for years prior to the outbreaks of KS and PCP - and suspected that it was connected to sexual activity.

"Unusual cases of protozoan infestations of the gastrointestinal tracts of gay men had risen 7,000 percent in the previous six years and were now so common that a new diagnosis was officially coined, gay bowel syndrome, recognized by the McGraw-Hill manual Colorectal Surgery, an industry standard, and the Centers for Disease Control alike. There appeared to be concomitant epidemics of cytomegalovirus and Epstein-Barr virus, and a bizarre incidence rate of lymphadenopathy—knobby and swollen lymph nodes, which one would expect to encounter infrequently. Sonnabend diagnosed lymphadenopathy in 40 percent of his patients, a consequence, he believed, of the body’s reaction to various other venereal infections. That same causal link could also have explained the simultaneous preponderance of enlarged spleens, low white blood cell counts, and low blood platelets."

It was Sonnabend who would use his previous research experience with interferon and immune system function to provide the first evidence suggesting that there was an infection agent behind the unusual symptoms and diseases now being seen across the country. Ironically, Sonnabend would go on to advocate the position that it was promiscuous sex, especially receptive anal sex, that weakened the immune system and allowed that rapid development of opportunistic diseases.

France details the early confusion over the cause of AIDS, and the difficulties that proponents of both the over-taxed immune system theory and the unknown infectious agent theory faced when they made the obvious recommendations that reducing the number of partners, making choices about which sex acts one engaged in, and using condoms - the beginning of the 'safer sex' approach to limiting the spread of the disease - might increase one's chances of avoiding the disease. Sexual liberation had become too ingrained as both a way of life and a symbol of gay liberation for this approach to be accepted for the first few years of the epidemic. It wasn't until the summer of 1983 - two years after the KS clusters began appearing - that activists in both New York and San Francisco published safer sex guides that finally brought about voluntary changes in sexual behaviour in the gay communities of America.

Focusing primarily on the personalities, organisations, and actions of New Yorkers, France recounts the events that led to the formation of such organisations as the Gay Men's Health Crisis, GLAAD, the Lavender Hill Mob, PWA Coalition, AmFAR and ACT UP. His narrative follows the work of the key activists involved in these organisations, their lives, conflicts, and in many cases their illnesses - the pressures of living with AIDS and their intense desire to live, even for just a few more years, being for many the driving force behind their activism.

One of the major threads that runs throughout France's narrative is the struggle for action on drug research, clinical trials, and inexpensive means of production and distribution. The primary government agency with responsibility for pharmaceutical development was the NIAID - the National Institute of Allergy and Infectious Diseases, a part of the NIH network - and it had prioritised AZT treatment over other possible treatments, including approaches that sought to extend life by preventing or treating the main opportunistic diseases that people with AIDS were actually dying from. They refused to run trials on the effectiveness of such prophylactic measures as Bactrim for PCP. When trials on new drugs were run, recruitment of test subjects was strangely difficult to manage despite the vast numbers of PWA desperate to try anything that might help them - partly due to extremely strict conditions of qualification, and partly due to virtually non-existent attempts at outreach to the community for trial subjects. Another key issue for activists was the requirement by the FDA for formal double-blind trials with a control group given placebos. Given the extreme fatality rates for AIDS, in situations where a drug had demonstrated effectiveness in patient settings, this could mean the deaths of most of the control group during the course of the trial. But the FDA refused to accept 'lesser' evidence of effectiveness. Another area of activists' attention was the fight to get the cost of drugs such as AZT - at one point one of the most expensive drug available - reduced.

The story of AIDS activism is also the story of a hew kind of relationship between the medical ad pharmaceutical industry and the people it supposedly serves. By educating themselves and agitating for representation in decision-making in both the regulatory and corporate arms of the industry, activists not only pushed forward research that led to effective and sustainable treatments for AIDS, but established a model for other communities bound by the fight against other diseases.

France's book sweeps one up into the struggle, humanises the participants, and, ending as it does with the introduction of the first generation of protease inhibitor drugs that gave those who survived the early years a real future, leaves one wondering, what comes next. It's a fascinating and compelling book.