Author: David France
This book about AIDS, the iconic epidemic of the 20th century, is written from the perspective of the activism that defined it. It describes how a despised subculture overcame the prejudice that stood in its way of conquering a scourge that was decimating its members. The book focuses on the activists and scientists who fought against complacent politicians, disinterested media, and an unsympathetic public, to stem the tide of the epidemic. It portrays how activists engaged and challenged health agencies and pharmaceutical companies, thereby driving the changes required to curb the spread of HIV. It also illustrated how the engagement propelled the research that would identify the virus and produce effective treatments. The book described how this strategy of active engagement achieved its objective, and provided a sort of template for future patient involvement and public activism in healthcare. Whilst emphasising the benefits of this approach, the author also highlighted the risks it poses to the standard scientific process.
The most remarkable feature of AIDS advocacy was the engagement of activists with researchers and health authorities, such as the Centres for Disease Control (CDC) and the Food and Drug Administration (FDA). The author illustrated how the activists, by learning everything they could about the disease, were able to engage with AIDS researchers on an almost equal footing, thereby helping to ‘forge the drug breakthroughs that would make AIDS survivable‘ (pages 345-348 and 109). The impact of their engagement was such that they ‘fundamentally rearranged the roles of patients, doctors, researchers, and pharmacists’ (page 109). The book noted many of their contributions, such as making improvements to research protocols, and generating the community data which the FDA relied on to approve aerosolised pentamidine for the prophylaxis of Pneumocystis carinii pneumonia (PCP) (pages 364-365, 379, 413-414). Their push for ethical prescription of experimental drugs, reflected in their rallying cry of ‘drugs into bodies‘, was however often at odds with the usual scientific and regulatory oversight processes (pages 212-214, 253-265, 300-305, and 476).
The most important element in the success of AIDS advocacy was the incredible capacity of activists for self-organisation. The book showed how, within a very short time, disparate individuals pulled together to implement a range of effective actions, using methods ranging from assertive diplomacy to angry street protests (pages 204-205). Powerful pressure groups emerged to campaign for specific goals, for example Gay Men with AIDS set out to stop the risky sexual practices that fuelled the spread of HIV (page 68). The author sketched the profiles of many early organisers such as the playwright Larry Kramer who emerged as ‘the de facto leader of the response effort’, and Spencer Cox whose knowledge and insights enhanced the collaboration of activists with scientists (pages 21-24 and 45). Another central character was Dr. Joe Sonnabend, an infectious disease specialist in New York, who the author described as ‘perhaps the most vigilant AIDS clinician in the country’ (pages 16-19, 88-89, and 444). The author, a homosexual himself, was an activist, and was the first reporter to attend the New York mayor’s news briefings on behalf of a homosexual newspaper (pages 13 and 70).
A potent theme in the book is the author’s graphic portrayal of American homosexuality in the 1970’s, a period of an ‘explosion of sexual experimentation‘. The sexual exploits of many homosexuals at the time was perhaps best symbolised by Gaetan Dugas, the French Canadian flight attendant whose global network of sexual partners marked him as the possible ‘patient 0‘ of the AIDS epidemic (page 87). The author described several kinds of extreme sexual practices which inevitably triggered a ‘tidal wave‘ of sexually transmitted diseases, including the constellation of unusual intestinal infestations known as gay bowel syndrome (pages 18-19). The impact of these infections is personified by Michael Callen, one of the central characters in the book; he had been intimate with about 3,000 sexual partners, and had been treated for diseases such as shigella, chlamydia, syphilis, gonorrhoea, human papilloma virus, herpes simplex, amebiasis, mononucleosis, and hepatitis (pages 45 and 29). HIV widened the range of infections that afflicted homosexual men such that, at one point, there were 24 opportunistic infections killing people with AIDS (pages 174-176).
A major concern highlighted throughout the book was the nonchalant attitude of society towards the AIDS epidemic, almost certainly because the victims at the time were predominantly homosexuals. The absence of media coverage was particularly striking, the author noting that ‘it took two years and almost six hundred dead’ before the New York Times featured AIDS on their front page (pages 90-91). Political apathy was also rife, reflected in the author’s observation that by late 1982, neither President Ronald Reagan, nor New York Mayor Ed Koch, had publicly mentioned AIDS (page 61). The attitude of the general populace was at best detached, and at worst aggressive. AIDs victims were avoided or abandoned in life as well as in death, with even undertakers refusing to handle their corpses (page 92). Violence against homosexuals also became common place especially when it emerged that AIDS was transmissible by blood transfusion; the author demonstrated how this realisation ‘unleashed a torrent of anti-gay violence the likes of which the community had never seen before’ (pages 69-73). The negative attitude towards AIDS persisted until the announcement that the actor Rock Hudson had contracted the disease; this development marked a turning point because it brought about increased government spending on AIDS research and public health (pages 188-192).
Just as the author recounted the ravages of AIDS, he also chronicled the research process that eventually pinned down the causative virus, and led to the development of effective treatments. This narration unfortunately exposed what the author called the ‘vulgar‘ scientific rivalry that tainted the race to identify the AIDS virus, an ‘unseemly squabble‘ which ‘simmered on for another two decades’ (page 227). On one side of the conflict was Robert Gallo of the American National Cancer Institute, discoverer of the retroviruses HTLV I and HTLV II, but who wrongly claimed that the AIDS virus was also a human T cell leukaemia virus. On the opposite side were eventual Nobel prize winners Luc Montagnier and Francois Barre-Sinoussi of the French Institut Pasteur. What transpired between the two sides was portrayed by the author as a tragedy of immense proportions that ‘would slow down AIDS research, lead to countless deaths, and cloud the pursuit of effective treatments in a scrim of political intrigue‘ (pages 100-104). The author catalogued a spectacle of lies, deception, self interest, and a ‘guerilla marketing campaign’ carried out by Gallo whose discovered virus turned out to be the same one sent to his laboratory by the French (pages 139-142, 169-173 and 209-210). The author however argued that Gallo, ‘despite his obsessions and unseemly competitiveness, was the acknowledged genius of AIDS research‘ and ‘the field’s driving scientific mind‘ (page 216).
Perhaps the key lesson of this book is that surviving a plague has less to do with the ferocity of viruses, and more to do with the way individuals, groups and governments respond to it. By looking back at the the AIDS epidemic as it emerged and evolved, the author provides a clear picture of how decisions that are taken, and not taken, determine the final impact of plagues. By charting the organisational aptitude and determined actions of a community facing imminent annihilation by a rampaging virus, the author provides a blueprint for surviving all epidemics. The book teaches that plagues are conquered when individuals and groups cease or modify their epidemic-promoting behaviours, and challenge authorities to protect the most vulnerable. It also clearly shows that society can confront and convince reluctant political, health, and media institutions to take epidemics seriously.
This is a masterclass in the importance of patient and public engagement in health care, pointing out how activism and advocacy are most effective when carried out on the basis of scientific facts, and not on myths and fears. The book shows how human failings impeded the fight against AIDS at all levels, and how prejudice and bias compromise patient safety. The book teaches the key lesson that the urge to find effective cures for epidemics must be tempered with the requirements of the scientific method. The author’s prose was moderate and reflective throughout, and there is very little to criticise about the book which I recommend it to all doctors.
Publisher, Place, Year: Picador, London, 2017
Number of chapters: 19
Number of pages: 624
Star rating: 5