The most recommended HIV/AIDS books

Of the very, very many books about writing and reading, Alexander Chee’s book of essays is among the best. His prose is honest and soul-baring and his descriptions are the kind you wish you’d thought of. The collection is basically a coming-of-age story divided into anecdotal episodes—as an exchange student wanting love in Mexico, working at a famous gay bookstore in San Francisco while AIDS decimated his community, and time in academia. Chee has an affection for his readers and students that is engaging. He’s also a great Twitter presence and like Jacob, also a looker. At a Christmas party we both attended, we discovered we are Leos, so, we’re basically bonded for life. 

Karen Tumulty has written the definitive biography of Nancy Reagan. Readers will come away with a far deeper appreciation of the woman who was President Reagan’s fiercest defender and who helped shape his life and political ascent. I was especially drawn to the book by the insights Karen Tumulty provides about the Sacramento during Reagan’s time as governor, and about the Reagan’s California years before and after the presidency. Karen Tumulty’s description of Nancy Reagan’s years after Ronald Reagan’s death is especially compelling.

Craig Timberg was a reporting colleague when I was a correspondent in South Africa, and became a friend, one with whom I often passionately disagreed.

That’s why I suggest this book: it offers a very different perspective than mine. Craig and his co-author Halperin, an epidemiologist whose work had a big influence on Craig’s thinking, draw a clear through-line for how Western powers created the sparks of the African epidemic then vigorously fanned them.

A significant chunk of the book focuses on solutions (Halperin is a vociferous champion of male circumcision as an intervention to drive down the spread of the virus). It’s a brisk read that makes complex epidemiological dynamics accessible.

Since long before COVID, Ruth Coker Burks has lived a life of service to people who were abandoned by their families after being diagnosed with AIDS.

In the dark days of that epidemic, she cared for them, advocated for them, even buried them in her own family plot in Arkansas. She persevered despite relentless bigotry and hatred that included cross-burnings on her front lawn. Nothing stopped her.

Coker Burks earned the nickname ‘cemetery angel’ by proving that everyone can make a difference in the lives of others. I’m honored that we have become friends, because she inspires me every day.

Emily Martin’s work was some of the first things I read when I wanted to understand how we understand medicine.

There’s such a gap between the health information we’re given and what we actually believe and Martin really covers how Americans have understood the concept of immunity and how we’re influenced by popular culture and the media.

This book is absolutely crucial for understanding both how we look at immunity and understanding how doctors are not free of bias. 

These are Foucault’s final lectures in 1984. They are a remarkable testament to philosophical courage. In late December of 1983, Foucault fell ill. At this time he may have received a diagnosis of AIDS, but it is not sure. By March, he was regularly in and out of the hospital. At this point, he no longer sought a diagnosis but only inquired how much time he had. The editor Frédéric Gros observes that, like Socrates, whom Foucault references repeatedly in these lectures, he was more concerned with failing to complete his mission than with death. At the beginning of his final lecture, Foucault stood before his audience and said, “I am going to try to give you two hours of lecture today, but I am not absolutely sure I will make it.” He gave the full lecture.

In We Are Having This Conversation Now, Alexandra Juhasz and Theodore Kerr blow up the conventions of academic work on epidemics.

In a series of thirteen short dialogues they reflect as activists, media-makers, and scholars on the history, present, and future of AIDS. The reflections on AIDS-related culture and conversation they share, will spark for readers critical questions about how personal experiences, community, cultural production, and interpersonal relations come together.

Doing this kind of reflective work is particularly important now, as we need to begin to understand not only HIV/AIDS, but how it impacts the experience of living amidst other viral pandemics including COVID-19. 

One of the qualities of mystery fiction that continues to draw me to the genre is the complex interplay between past and present. Nava’s 8th Rios novel utilizes separate narrative lines that resonate and then, like a parallel perspective drawing, converge in a powerful emotional twist. The first line is the story of Bill Ryan, a young gay man who, after being cast out of his home in Illinois, flees to 1970s San Francisco to discover himself and the gay community. The second line is Rios’s recovery from alcoholism and his investigation of Ryan’s suspicious death during the beginning of the AIDS epidemic. Ryan and Rios serve as foils: Ryan is a man losing the war with his self-loathing. Rios, in contrast, is winning his war.

This book characterizes the discovery and spread HIV and AIDS. Shits an investigative journalist provides an extensive look into the disease itself, the politics and politicians battling to control or ignoring the disease. Also discussed are the events that shaped the pandemic leading to its expansion or its control. 

There are so many reasons to love this book, but my top is the story of David Bingham, who lives in New York City with his older lover and who is secretly a descendant of Hawaiian royalty.

The book makes three big leaps in time, and David’s portion is set in the early nineties. As the AIDS crisis rips through their community, he privately tries to contend with the pain of being abandoned by his father, who left his family to join the Hawaiian independence movement.

When I set out to write my book, I wanted to write a contemporary story set in Hawaiʻi but didn’t trust that the issues driving the plot would be clear without historical context. Hanya Yanagihara does no such thing. She treats Hawaiʻi as a place whose history is known, which allows her to turn her attention toward imagining its future. 

Leader? Hero? Saint? It’s difficult to find the words to define Haregewoin Teferra, the subject of this book, but somehow I feel these still fall short. A woman living in relative comfort in Addis Ababa, Ethiopia, her life is turned upside down when she is given two young children to care for whose parents died due to HIV/AIDS. In time Haregewoin becomes a mother to many more just like them. In opening her doors, Haregewoin opened her heart to hundreds of orphaned children and gave them the chance of new and happy lives. This is a book that moved me to tears. Tears of rage at the injustices in the world and tears of relief that people like Haregewoin still exist.    

Peter Piot was a young microbiologist at a lab in Belgium, in 1976, when he was assigned to analyze specimens in a thermos bottle shipped up from Zaire, where villagers were dying of a horrific and unknown disease. The thermos contained a virus that came to be known as Ebola. This was the event, as his book vividly recounts, that led Piot to a long and distinguished career in infectious viral diseases, from Ebola to AIDS and beyond.

This is a collection of short stories by John Waters bit-part actress—Cookie Mueller. Most of the well-crafted stories in this cult classic are autobiographical, and most feature the author’s travels around America and Europe, and the rest of the world. Cookie has a unique literary voice, and reading her stories it’s like you are actually getting to know the author personally. Criminally out of print for many years, this excellent book was recently re-published in the UK by Canongate. Unfortunately, Cookie died at the tender age of 40, and so was unable to fulfill her undoubted potential. 

This is an amazing book if you want to understand that disease isn’t just medical, it’s also cultural.

Contagious really describes how culture influences how we understand illness and how that affects treatment and care of individuals, including who we blame and how we understand risk.

People like to think of medicine and science as being detached and objective, but this book shows that simply isn’t true. 

Benjamin Justice is a broken man—a former prize-winning journalist whose career (and life) has been shattered by the death of his lover and a scandal surrounding his best-known writing. Recruited by his former boss to assist an up-and-coming journalist, Ben finds himself investigating a murder that occurred outside a gay bar. The series is tightly written and casts a dark glamor across gay life in ’90s California.

This in-depth account of the infamous Tuskegee Syphilis Study is considered a classic in the field of medical ethics. Though Greg Dober and I have recently discovered the true origins of the Public Health Service’s “non-treatment study” and former Surgeon General Thomas Parran’s critical role in the ugly saga, Jones’s book is still the best chronicle available, and lays out a devastating narrative of how a sophisticated but uncaring and racist scientific establishment could annually examine and not treat hundreds of unschooled Alabama sharecroppers suffering from a deadly disease. 

A few years ago we at Gertrude lit journal decided to answer the question that kept coming our way: What are some great books written by queer people with narratives that center on queer people? Before the pandemic made a mess of things, we ran GERTIE, a book club that chose two fabulous queer books every quarter. This was our very first book selection, and—like with many firsts, perhaps—it holds a special place.

The Angel of History takes place during one night in the waiting room of a San Francisco psyche ward when visits by the Devil and 14 Saints reveal the life of Jacob, a Yemen-born poet who was born in an Egyptian whorehouse. Yes, you read that right. 

Marty Fink’s book is one of the best examples of recent and groundbreaking scholarship on HIV/AIDS.

Fink examines HIV/AIDS histories through critical disability studies discourse to show in a compelling and very readable way how queer and trans people in the 1980s and early 1990s came together to take care of each other when faced with stark and far-reaching state violence.

This book has deep contemporary relevance showing how multifaceted HIV care-giving narratives continue to inform how individuals and our wider society makes sense of gender, disability, and kinship.

Such work is essential in this political moment where we are seeing ever-more challenges to bodily self-determination, for women, queer and, especially for trans people. 

Steinberg is one of South Africa’s great writers of narrative non-fiction; his work is oddly little known outside his home country and it was of huge value to me when I discovered it, not long after I moved to Johannesburg.

This book tracks the progress of a testing and treatment program in Lusikisiki, which had one of the highest HIV infection rates in the world. Part of the story is told through the eyes of a white doctor who expects that, once treatment is there, everyone will seek it out – and a young Black man named Sizwe, clever and successful, who shows all the reasons why HIV response is not as simple as opening up a clinic.

Steinberg’s book probes into some of the messier, less-well-understood dynamics that have driven the pandemic, and features voices rarely heard outside a community like Lusikisiki.

Peg Kehret brings humor and a genuine can-do attitude to her memoir about being struck by polio when she was twelve years old, leaving her paralyzed in both her arms and legs. The story of her fight to recover and to walk again is enriched by her friendship with fellow patients, the generous love of her family, and the care of a determined nurse. Peg is neither saint nor grouch—just someone you like as much as you admire. This is a feel-good book about a feel-bad topic.