Even for someone in infectious disease it is very hard, in 2017, to appreciate the enormity of the emergence of HIV in the United States in the early 1980s. HIV, a prototypical emerging infectious disease, has been transformed from one for which no treatments were available pre-1987 to one in which medical students are overwhelmed with trying to learn the various drugs that can be used against it (in the developed world). The diagnosis of HIV is no longer the equivalent of a uniform death sentence (although I just witnessed an HIV patient die from an overwhelming infection this past Saturday).
It is well recognized that this transformation occurred with a full-throttled research agenda that delivered new drugs, new diagnostics, and pathbreaking identifications in immunology and virology culminating in the awarding of a Noble Prize. What isn't well recognized is the intransigent efforts of HIV activists to not allow this disease to become victim to bureaucratic inertia (or worse). This story is masterfully told by David France in How to Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS, a comprehensive narrative based on France's award-winning documentary of the same name.
The book is a personal tour of those plague years in which little to nothing was known about the virus when death and despair was the norm. In this dismal context, a group of citizen activists, many of whom were literally fighting for their lives flourished alongside a select cadre of scientists and physicians who attacked this problem with the full force of their intellects. France's book weaves all these tales together and shows how these tandem tracks converged and diverged while all involved were navigating in a largely inhospital political environment.
In its chronicling of the origins and rise of AmFAR, ACT UP, GMHC, TAG, and many other organizations that sprang into action to face the pandemic, the book illustrates just how impactful citizen activists were. Their success was not just in raising awareness but was instrumental in drug development and treatment guideline promulgation.
That these early People with AIDS fought so valiantly, many to death, for their lives through every avenue, whether open or closed is heroic and admirable. The innovative solutions such as "buyers' clubs" that made experimental therapies available are one example. The best representation of this heroism, to me, was their refusal to let bureaucratic regulations stand in way of their lives. Their actions, particularly with the FDA, fundamentally altered the way things had been usually done. Such lessons could directly impact on current fights against modern infectious disease threats such as antibiotic resistant bacteria and emerging infectious diseases.
The book is full of powerful anecdotes and poignant incidents that should never be forgotten and now won't be.