And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition

The word “epic” is not too strong a descriptor for Randy Shilts’ 1987 book And the Band Played On, Politics, People and the AIDS Epidemic as seen by his compelling and masterful telling of the many heroes and villains whose actions shape the local, state and federal public health and policy responses to AIDS in its first decade. A journalist and gay man writing for the San Francisco Chronicle, he begins his sequential account with a list of the “dramatis personae” and “the bureaucracy” to help the reader comprehend the multitude of people and agencies implicated in the fact that by 1986, 36,058 Americans had been diagnosed with disease and 20,849 had died. This book helped me understand how the roles of different governmental health agencies, the press, community organizers, and politicians combined to create an epidemic whose severity could have been mitigated if politics, discrimination, fear and greed had been eliminated. It is worth noting Shilts’ sources. These include documents released with the Freedom of Information Act and hundreds of interviews with public health officials, scientists, physicians, activists, and politicians. The reader must decide if the reporting seems fair and balanced. For my part, given Shilts’ experience as a journalist I trust his reliability in reporting the facts. As a gay man, he introduces a human component that is deeply moving and powerful especially when he describes the terrible suffering and lives cut short. Gay men, politicians, and researchers all suffer from equal doses of self-interest and greed. If there was some bias in his book, I feel it was warranted because of the urgency he felt in reporting on a disease about which there was so little concern. In a 1987 New York Times article, the reviewer of Shilts’ book argues that he overstates the impact earlier interventions would have had. I do not agree that Shilts makes any assumption about what earlier interventions could have achieved; rather, he reports the facts and holds all those accountable, including the New York Times, for their negligence. Finally, it is useful to examine what has happened to some of the people in Shilts’ book and where the U.S. is today with respect to the AIDS epidemic. Randy Shilts was diagnosed with HIV soon after his book was published. He died in February, 1994, right as a new group of anti-retroviral “cocktail” drugs became available and AIDS became a chronic disease. Larry Kramer, a gay New York novelist, playwright and activist who appears often in the book, had founded the Gay Men’s Health Crisis and went on to start the AIDS Coalition to Unleash Power (ACT UP) in 1987. The radical group demands adequate medical research, treatment and health policies improving the lives of people with AIDS and is well known for its “Silence=Death” bumper stickers. Two months ago, Kramer and his partner of several years were married at a New York City hospital because the 78-year old man had bowel obstruction. According to the Centers for Disease Control, in 2009 an estimated 1,148,200 persons aged 13 and older were living with HIV infection in the U.S. In 2010, there were an estimated 47,500 new infections; nearly two-thirds of these occurred in gay and bisexual men. African-American men and women have incidence rates eight times higher than whites. In Malawi, Africa, where my organization provides primary health care services and HIV counseling and testing, the prevalence is 10% of the population aged 15-49 years. There is concern about the commitment of governments to sustain the funding needed for free anti-retroviral medications in poor countries. AIDS remains a disease of the marginalized and less powerful. The U.S. populations at risk for HIV include men who have sex with men, prisoners, certain ethnic groups and intravenous drug users. Southern states are disproportionately affected (CDC). In the U.S. and globally, there is a need for new drugs to be developed for those who have resistance or suffer from severe side effects. In Malawi, 70% of the country’s health budget depends on foreign donors. The average annual amount of health care dollars spent per citizen is about $30. The health funding can be tied to the political priorities of donor countries as was seen two years ago when the aging and autocratic president expelled a British diplomat resulting in a sharp decrease in international aid. African nations experiencing extreme poverty see corruption and greed at all levels of government and society.

“Those ignorant of history are doomed to repeat it.” “The primary problems we now face are not scientific problems but social problems involving science.” Such statements certainly provide an impetus to read this classic about the early history of AIDS in America. Though this book is over thirty years old, its meticulous research still communicates how human nature often denies diseased persons respect, compassion, and the resources necessary to recover. Such was certainly true in the 1980s with HIV/AIDS when the ball was dropped by almost everyone – politicians, doctors, scientists, activists, those with a disease, those afraid of a disease, the gay community, and the business community, to list a few. Reading this in an era of a new global pandemic (COVID), I am struck by the emotions that AIDS evoked during the 1980s and how those same emotions are reflected in encounters with a new disease. Denial, bargaining, pride, and greed are all common, human responses when encountering deadly threats. In this book, Shilts brings to life how those factors played into the advent of AIDS. He educates readers not just about HIV but about social responses to adversity. This book does not delve into pure science much. Indeed, if anything, it’s a little light on biology. However, what it lacks in hard science, it makes up for in human concern and focuses on four leading cities: San Francisco, New York City, Washington, and Paris. It treats impacted individuals with a depth of empathic understanding and detailed reporting that sucks the reader in. Intrigue is built section by section, chapter by chapter, part by part, through presenting the right facts in the right order. Few heroes dwell in this book; in fact, most heroes end up dying. Instead, this story becomes a malady of errors where human weaknesses continually jeopardize ultimate success. Forty years later, AIDS remains with us. Successful treatments exist, but they are not cures. Vaccine trials, in which I am involved as a community advisor, have repeatedly failed. Homosexuals are less socially stigmatized in America, thanks to prolonged efforts of activists. Indeed, homophobia, the norm in this book, has become more stigmatized. Reagan’s legacy has positively become bound up with the defeat of totalitarian communism, but this book reminds us that his legacy also negatively reflected a coldness when presented with his people’s suffering. This book deserves a serious read by just about everyone due to the accuracy of its depiction of human nature. As COVID reminds us, pandemics can still occur, and humans can still struggle to squarely face their realities. This book gripped me so much that while reading, I allocated most of my spare energy and all of my spare time towards digging deeper into the subject. If more people read this book decades after the emergence of AIDS, perhaps America and the world can deal with the next pandemic better. (But don’t count on it!) The obvious, most recent options to study about pandemics are the Spanish flu and AIDS. Having studied both, I definitely think this book deserves its place on a short reading list about modern epidemics and the sociology of disease.

And the Band Played On is an act of phenomenal research and writing, and a very frightening book on many levels because of the political wrangling, political bumbling, and political disregard for a medical crisis which cost the lives of so many, the scientific in-fighting which slowed medical break throughs and sacrificed lives, and the insanity of national agencies which were supposed to be saving lives, but which in this case knowingly risked the lives of many either because they didn't want to do the work, didn't want to spend the money, or didn't want to anger certain political groups. Gay men were deemed to be utterly dispensable by so many. It's the sign of a good book when it brings out strong emotions. This book provoked in me anger, rage, confusion, compassion, sadness, and tears. I wish I could thank all those, like Don Francis, Dr. Michael Gottlieb, Dr. Selma Dritz, Marc Conant, Dr. Dale Lawrence, Paul Volberding, and Dr. Arye Rubenstein, who tried so hard, against such overwhelming odds, to save lives quickly. I would also chastise President Ronald Reagan and Merve Silverman and give Margaret Heckler and Bob Gallo a piece of my mind -- the skunks! I am thankful that there are politicians like Orrin Hatch and people behind the scenes like Bill Kraus and Cleve Jones. Though he was woefully slow in responding I'm grateful for the response of C. Everett Koop and that once having made his stand he never wavered and took it to the media wherever he could. Randy Shilts did an excellent job of showing the culture in the United States and France and the politics in the medical and scientific communities and the political posture and arena during the 1980s. He also humanized the crisis by following many of the patients from onset of medical problems to death (Enno Poersch, Gary Walsh, Frances Borchelt, Bill Kraus, and Gaetan Dugas) and by following the doctors and scientists in their fight to discover the properties of this terrible disease and conquer it. It was enlightening and helpful to have the book structured as a time line. The amount and variety of research done for this book is astounding, requiring Shilts to conduct hundreds of interviews and read millions of pages of articles and medical material. In reading this book, my education has been enhanced and my life is more full and forever changed. It is a great tragedy that AIDS killed Randy Shilts as it had killed so many other innocents, and that as I write this there is still no cure for AIDS. As far as I can tell, it is again being largely ignored by governments and the medical community. Where will the next Randy Shilts, Bill Kraus, and Dr. Gottlieb and the other saviors come from--and will they come soon enough?

Shilts' book is a masterful historical account, and it prompts a larger question. Indeed, it's almost a day-by-day record of the horrible AIDS epidemic. The book touches on medical, political, economic and psychological dynamics all folded into what spread from a few cities in the USA to many cities worldwide. AIDS was highly contagious in certain risk groups with a fatality rate of roughly 50%. The book is a very important study, especially for those whose health was unaffected by the epidemic. It tells what really happened, which I personally was fortunate to miss, but from the fringes, I was deeply saddened and perplexed by what I saw. The caveat or caution I offer is that this 600 pages is NOT an easy read. In many places, I'm sorry to say, it really drags. Much of it should not be skimmed as for its importance, but I confess that I accelerated into skimming and even to skipping some sections. I returned to more careful attention near the end. Here's a rather obscure take on the importance of it: Could the AIDS disease and its story be a harbinger of what's to come? I read the book after considerable study of astrophysics and anthropology. I was especially taken by Frank Drake's equation for an estimate of other advanced civilizations, N, likely in our galaxy, then using ours as typical, extrapolating it to N, the number of other civilizations in the Universe. Edwin Hubble's work led to an estimate of a billion galaxies in the visible universe. Carl Sagan ran some numbers into Drake's equation. The most frightful part of Drake's equation is his last screen, a factor that reduces the number of interstellar communicating civilizations in a galaxy to the ones that are still living. That is, they have not yet destroyed themselves with their own technologies or "other flaws" in their civilizations. When Sagan's starting number gets to that last screen, he has one billion such advanced civilizations. Then, applying the last screen, the final number, N, for those still living, he gets TEN—one of which is ours on Earth. I've thought perhaps too much about the number and nature of those "other flaws." As for evolution, we Homo sapiens will evolve in our intelligence, if we evolve at all. And where might be lethal flaws in our intelligence? Shilts' book prompts me to wonder about those of us who contract a deadly and highly contagious new disease, then object on the basis of civil rights infringement, if the pubilic facilities in which our unsafe behaviors multiply the infection of others, if those facilities—bathhouses—are shut down by government authorities. The question I ask is about the lack of wisdom or intelligence in the choice to take the position that involves a deadly risk to enjoy a more liberal and short-sighted civil right. Similarly, we see that unwise choice in the one million Americans who died from COVID, where about 90% of the dead were unvaccinated. Some of them avoided or protested mandatory vaccination as an infringement of their civil right to choose what, if any medications, they take. If unvaccinated, they run the risk of infecting others and of death themselves. Where's the larger wisdom or intelligence in that trade-off? Finally, could it be that in too large a part of our civilization, one of its fatal flaws is a lact of wisdom in such trade-offs? Surely, there are new deadly diseases yet to be discovered, and there are other threats to our survival as a species, like rampant, uncontained AI. By now, nuclear weapons may be obsolete. Are we ultimately to end up some centuries from now among Frank Drake's vast cohort that doesn't evolve into a more intelligent species of Homo? Do we have the makings of an advanced civilization that doesn't make the cut from a billion to ten? That's just my rather arcane reaction to Shilts' heroic work, recording a very tragic, very important part of our modern history.

Horrifying subject matter, the breakout AIDS epidemic that started in 1980. The author lived through the first 15 years of it before succumbing to AIDS. Recalls how the Regan administration ignored it for years and tried to lable it as a gay illness, then heterosexuals began dying of it, the entire Hemophiliac community started dying, etc. He tracked where it initially originated, the Doctors who were desperately trying to get it under control, and find treatments. The race between the CDC and Pasteur institute In Paris, France, and how the Regan administration kept denying funds for desperately needed research. Great and frank look at the world of those affected at the time. Quick read because of the way the author laid it out, but it's a very thick book. This my third time reading it. As a former nurse, and an RN when it was still an unknown, it was and is a worthy read.

This is one of the best books I have ever read and yet it is one of the most disheartening. The government's response, described in all its glory, to the AIDS epidemic is nothing short of appalling. It shows that bureaucracy is a cancer, and it needs to be excised by putting in place individuals that are not afraid to saying out loud when things need to change. Most in position of power chose to cover their rears instead of doing what needed to be done. Sad, very sad, The response of the blood banks to the mounting evidence that they were spreading the epidemic to innocent victims, was nothing short of criminal. That none of their officers or people responsible of maintaining a wait-an-see policy was ever indicted of negligent homicide is proof that if you have money, you can pay your way out of anything. Shame on the Red Cross, shame. This book also shows that heroes are not always vindicated and rewarded when everything is said and done. The actions of the UC system against those that went outside "the proper channels" to get AIDS funding to fight this scourge, should have been exposed. The pettiness of the board of regents to push out and deny tenure to those that had helped spearhead the fight goes to show that in the most liberal state in the nation, there are plenty of recalcitrant idiots in power that need to be pushed out, else people will continue to suffer. The book also shows that some in the gay community decided to ignore all the warning signs of impeding doom, and selfishly decided that continuing to live their lives as always, even after they had been diagnosed, shows the selfishness of many during this crisis. The bath owners, using their political clout, pushing to maintain the status quo knowing full well what they were doing was also nothing short of criminal. Surprising was to see the response from New York city, its mayor, and the state governor, to the epidemic. They did absolutely nothing until things were out of control. Disgraceful. Kudos to those in the gay community that fought even against their own to bring the epidemic out of the shadows and into the limelight. The sacrifices that many made to help those afflicted, providing economic and emotional support to those that were dying was very touching. This minority of members of the gay community, a few members of academia, a handful of government employees, and also a few in the medical field, whom fought tooth and nail to get funding and make everybody aware that AIDS was not a gay issue, but a human issue are the real heroes of the story. The biggest takeaway from this book is that we are not ready for the next pandemic. We do not have a strategy to fight these diseases wherever they come from. It is not a matter of if but when, 'cause nature will strike again and if we act the same way that most did during the initial AIDS epidemic, this time around the number of victims may be in the hundreds of millions. I can only imagine the bickering between NIH, NCI, HHS, CDC and others as to who should get credit, or who should be fighting to save lives, while people die in droves, and all that while Congress sets up hearings to see who they can blame, so they can score political points. Fantastic book, eye-opening, and sad, very sad.

I found this to be an amazing book, unfolding step-by-step as though it were a suspense story. Which, at the time, it certainly was. Journalist Randy Shilts wrote a well-researched, even-handed, and incredibly readable account of the science, politics, and personalities of the incipient (and then burgeoning) AIDS epidemic. The book begins in Africa in 1976 and concludes shortly after Rock Hudson's death from the disease in 1985 (which finally brought public attention to the issue). First referred to only as "the gay cancer," the disease had a few short mentions by the media as it appeared in the straight population (in hemophiliacs, blood transfusion patients, and newborns). Throughout the book there's a palpable tension between the medical and political arenas as they grapple with (or attempt to ignore) the disease. Anyone who agitates to cut government spending by getting rid of or sharply reducing the powers of the Center for Disease Control (CDC) should be required to read this book. Although there are a number of heroes among the characters, the CDC--with its intelligence, tenacity, and compassion--heads the list. At the beginning, it seemed that a handful of CDC scientists were the only people who cared, and they were among the very few that sensed the illness was likely to become an epidemic. To essentially foresee the future--but to not be able to convince others of the reality--must have been nightmarish. The story successfully blends a number of elements: competitive jealousies within the scientific community (it's likely that the French actually discovered the AIDS virus, despite a neck-in-neck US researcher who claimed the glory), the politics of the slow-moving National Institutes of Health (NIH), Reagan's stubborn refusal to address the AIDS issue (he finally did so six years after the epidemic began--and after 20,850 citizens had died), and a number of incredibly touching stories of people with the disease. One thing I hadn't known was the schism within the gay community: some people recognizing the reality of the threat while others (understandably) discounted it as internalized homophobia or as a homophobic attempt at sexual repression. Ultimately--when all the medical and political wrangling is stripped away--the book is about people facing AIDS during a time when it was a horrible death sentence. In reading this account, one can't help but have compassion for all patients everywhere whose end of life includes ostracism, derision, and shaming. Yet, despite the dire circumstances, there was also love and compassion. Selfless nurses volunteered to work the AIDS unit, even when the disease was still somewhat of a mystery. The Shanti Project was a grassroots effort that cared for the sick and the dying by providing housing, medical care, friendship, and emotional support. This book captures a period in time where, in the midst of sometimes slow-moving science, second-class-citizen politics, and a seemingly indifferent larger society, some dedicated people struggled to raise awareness, to change habits, and others, to face death with equanimity.

This is nothing less than a compulsively readable tour-de-force in modern medical journalism. It's the history of a disease, a people, and an era all in one. I always knew I'd read this book eventually, but as with any long non-fiction tome there comes a risk that at some point your attention span might have to bow out. Not here: this book holds your interest on nearly every page (I skipped one or two of the more dense courtroom testimony pages, but often later went back to read them anyway). Randy Shilts does not ask for your time lightly - every chapter here is earned. It seems almost an omniscient narrative voice in involved, and with over 900 interviews and his own previous years of investigative work on AIDS, there's a reason for that. Before reading, I had foolishly assumed the word politics had been added to the title to sex it up a bit. Nope. The story of the various responses people, communities, and entire governments had to AIDS was all about politics. So often reading this book did I get the impression you could actually hear the bullet whiz past your ear. If you were born around or before 1980 in a first world country and ever had a blood transplant, this could have been your story too. While Mr. Shilts avoids sensationalism, the story is sensational enough in its barest facts for that point to be clear. I immediately looked up the author to learn more about what he had written only to discover he too died from AIDS in the 1990's. His book, already a tribute to a lost generation, is now an example of all the substantive contributions those men and women could've made if politics could have been shoved aside sooner. This book is a rare thing: it is both a great, historic work and a damn good read. Would that Randy Shilts had lived long enough to give us many more of its calibre.

Super documentado y tremendo. El testimonio de una epidemia letal complicada por los entresijos de la política, las rivalidades científicas y el rechazo social. Imprescindible.

Consegna veloce di un libro poco noto in Italia e quindi di non facile reperibilità. Copertina un po' sgualcita, per questo non ho dato il massimo

Meine Erwartungen an "And the Band Played On" waren nach diversen Reviews, die ich vorab gelesen hatte, hoch. Und sie wurden nicht enttäuscht. Randy Shirts schafft es, die Anfänge der AIDS-Epidemie beeindruckend zu schildern, einen Einblick in die gerade am Anfang besonders betroffene Gay Community zu gewähren und das Versagen der Politik zu entlarven. Das Buch ist nicht nur hervorragend recherchiert und zeichnet die Abläufe der Epidemie umfangreich nach. Da das Buch in unzählige kurze Abschnitte aus unterschiedlichen Perspektiven gegliedert ist, nimmt man auch unmittelbar Anteil an den Schicksalen vieler früher Opfer der Epidemie. Eine klare Leseempfehlung.

Fantastic book, heard about but never read til now. I lived through the early 80s as a Fashion Student from 1982 to 1985; I know a lot of people in the industry, fellow students and lecturers who died from AIDS, it took them very quickly. This book is a facinating insight into the gay scene in San Francisco in the 80s, the spread of HIV & AIDS, the people, the work to isolate the cause, the toll it took, the race to find a 'cure'. Poignant, when you lived through those times, even as a straight female.

Le livre était abîmé, la prochaine fois il faudra mettre la photo du livre d'occasion.