Axel, you described your project as “a little bit hubristic.” Why did you choose that description?
Hubristic indeed, because I wanted to tell the story of HIV—from the virus’s emergence around the turn of the century to the end of 2025, when the Trump administration cut international funding for HIV projects within 24 hours. I also set out not only to examine the pandemic’s effects in Germany but to look at its impact around the world. And finally, it mattered to me not just to explore medical, social, and political angles, but to share the life stories of people who have faced HIV and AIDS in diverse ways: patients and their families, activists, caregivers, and policymakers.
Were you aware from the start that this would be a fantastically ambitious idea?
I’ve been a journalist for a long time and have covered this topic broadly, so I could draw on years of research, countless interviews, and a wealth of material. As I worked on the book, I discovered that there were remarkably compelling stories in countries I hadn’t previously focused on much or at all. It was important to touch on as many facets and life experiences within the HIV context as possible. And so the project grew, perhaps a bit more than I had initially underestimated.
How long did you work on the book in total?
I devoted intense effort to it for roughly two years. Close friends and especially my husband bore the strain, because the work on this book sometimes consumed a lot of my time and attention. There was also the question of whether I could truly do justice to such a vast subject.
You describe the book as a “labor of the heart.” What do you mean by that?
Over the years, through working on this subject, I’ve come to know a great many people and their stories. I’ve also participated in volunteer projects dedicated to archiving HIV and AIDS history. That has carried a sense of responsibility. I hope the book provides a solid entry point for anyone who wants to engage more deeply with this history.
You wrote the book as a chronicle. Why this format?
That choice partly came from necessity. I’m a journalist, not a scientist. I didn’t approach HIV from a single scientific question; I wanted a readable panorama of the pandemic that would be accessible even to readers without prior knowledge. The chronicle form lets me compress information in both short and longer sections and keeps the focus on different countries, settings, and people. It makes it possible to experience, for example, how the epidemic evolved differently in the United States, Thailand, Iran, and Switzerland: which transmission routes were most common, who was most at risk, how governments responded to the crisis, and what the state of medical care looked like.
You don’t just write about how the pandemic affected gay men; you also discuss people who used drugs or who were infected through blood products. Where did you gather all this knowledge?
I drew on the work of many people and used them as sources: newspaper articles, medical publications, diaries, autobiographies, and other personal documents. I conducted a great many interviews and combed through a wide range of archives.
HIV/AIDS isn’t as present in public consciousness as it once was. At the same time, there are films and documentaries—such as Ira Sachs’s drama The Man I Love or the ZDF production AIDS in Zeiten der Liebe. Do you think there is a countercurrent to the way HIV and AIDS have faded from public attention?
I wouldn’t entirely agree. In many places around the world, HIV numbers are rising again for various reasons. In Germany, thankfully, new infection rates have stabilized, yet we still have a high and persistent number of people living with HIV or who don’t yet know they’re positive. Keeping HIV in the public eye remains essential—both to encourage regular testing and to protect people from infection. Regarding the early decades of HIV, we’ve entered a phase of historical view; one can study that era with some distance now. What motivated me was that many younger people—artists, scientists, and others—are now taking up this history. I hope the book serves as a helpful primer for them.
You were born in 1965. That means you were a teenager when the first Spiegel article “The Horror from Across the Ocean” appeared in 1982. When did you first hear about AIDS yourself?
That was in 1983, following Spiegel’s initial cover story. I was a rural kid with little exposure to such topics, and in my gay– lesbian student group, a young biology student gave a brief talk about what was known about the virus at that time. I didn’t quite grasp the alarmism, but I could sense how distraught and frightened he was. Two years later I moved to Berlin for college, and by then the situation—especially in the gay scene—had changed dramatically. AIDS had become an inescapable part of my life.
How has your own experience shaped the book?
In the 1990s, I first studied how HIV and AIDS were culturally processed in the arts, literature, film, and theater. Later, my focus broadened. This decades-long interest is, of course, deeply personal: I was marked and, in a sense, wounded by the early AIDS years. The losses in a big city were hard, and perhaps if I had stayed in the provinces, I wouldn’t have felt it as intensely. But living in the city left permanent scars, and I’ve found myself revisiting and reflecting on those experiences with growing intensity in recent years.
Today’s young gay men often rely on PrEP and may not be aware of the deep traumas of earlier generations. Do you think they should develop more awareness of that history?
I don’t want to sound paternalistic—“you should study this now.” That would be off-putting. But I do believe it’s beneficial to be conscious of one’s own history. The same goes for the West German gay rights movement, or the persecution of homosexuals during the Nazi era and in postwar Germany. Respect and recognition are due to those who lived through AIDS and those who founded AIDS services; the crisis helped create structures we still rely on today. Without the AIDS era, we might not have achieved as much progress as we did, such as the rapid advancement toward marriage equality. Engaging with one’s history can be genuinely enlightening and even enjoyable.
You raise a provocative point about marriage equality. Can you expand on that?
Society—and health policy—suddenly had to deal with groups that had long been marginalized: people who used drugs, sex workers, and gay men. Those once-excluded voices were brought to the negotiating table to discuss funding for AIDS services and effective prevention. The AIDS crisis compelled conservative politicians to address topics like anal sex in public forums—something that would have been unimaginable before. Gay men were particularly hard hit by AIDS, but they were also made visible: they appeared on talk shows, though often only as HIV-positive individuals or activists. The AIDS crisis helped politicize the movement further and solidified its structures. AIDS profoundly affected the gay community, but it also incited a great deal of change.
You’ve been engaging with this topic for decades. Was there anything that surprised or shocked you in your research?
The most astonishing discoveries were in regions I hadn’t previously explored in depth. I encountered stories I find almost unbelievable: in rural China, entire villages were left as orphans when unsafe blood plasma campaigns spread the virus; in Myanmar, miners endured grueling work only because they injected heroin before shifts, and repeatedly used the same needle, fueling infections. I also wanted to remind readers of episodes that risked slipping into oblivion. For instance, in Germany, as in many other countries, hemophiliacs were infected by contaminated blood products even after the risk was known. Some topics are difficult to discuss openly and are not well documented—for example, assisted suicides for severely ill patients in the 1980s and 1990s or forced sterilizations and forced abortions, which also occurred in postwar Germany.
You don’t just cover scientific and societal developments—you also tell HIV/AIDS through profiles of individuals, like writer Horst Bienek, activist Friedl Nussbaumer and Michel Handl, or the medical assistant Brigitte Zika-Holoubek. Why were these perspectives important to you?
These life stories stand in for countless others. Through them, readers can relive, through concrete examples, the diverse ways the pandemic affected people personally and socially, and how they responded to the crisis.
The media’s role is striking. How would you assess it?
Germany’s Der Spiegel, in the early years of the pandemic, did not exactly set a golden standard. Given its influence across Europe and beyond, coverage sometimes veered toward sensationalism and fear rather than presenting solid medical facts. Other magazines and tabloids often offered voyeuristic glimpses into private spaces rather than clear, informative reporting. This pattern wasn’t unique to Germany; media worldwide often worked in ways that provoked unnecessary fear and resentment.
There’s a notable theme around celebrities—both supporters like Princess Diana and Elizabeth Taylor, and those who publicly disclosed their infection. How significant was that?
Rock Hudson became the first international public figure with AIDS. The media frenzy surrounding him was enormous, but it had a powerful effect: suddenly, a global star who was presumed heterosexual became publicly associated with the disease. Even women’s magazines had to address AIDS. Hudson’s coming out helped normalize the disease in a way that was essential for ongoing public awareness.
Let’s bring this to the present: would you say lessons from the AIDS epidemic have informed responses to COVID-19 or Mpox?
That’s a tough question. With COVID-19, we failed to translate HIV prevention lessons into practice—how to tailor behavioral messages to specific populations, for instance. Early in the pandemic, the approach often relied on generic, unimaginative posters. Mpox offers a contrasting example: the established structures built during the HIV/AIDS era—peer support networks, counseling centers, AIDS service organizations—were able to coordinate with authorities and reach people at risk quickly. Information and vaccines were organized and distributed within a month. So, in Mpox, we saw how those prior structures could be repurposed effectively.
AIDS is an enormously tragic history, yet you argue that the era can be read as a story of progress. How do you justify that?
The networks and health services formed or strengthened during AIDS—counseling centers and healthcare organizations—continue to benefit us today. There have been important changes and achievements that many people don’t realize stem from the HIV/AIDS crisis. AIDS activism helped secure patients’ rights and ensured that patient advocacy is now a standard part of medical conferences and research. Hospices were established in Germany only after the AIDS crisis. Public understanding of sexuality also shifted; condoms are now commonplace—no longer a topic of embarrassment in pharmacies, but something you can find alongside everyday products. The modernization of how we approach funerals and funeral spaces—given many young men who passed away during the epidemic—also moved cultural norms forward. But perhaps the most significant medical victory is that an HIV infection no longer necessarily means death, and with modern therapy, people living with HIV can no longer transmit the virus. Recognizing how much of this progress rests on those earlier years is essential for understanding the broader history.
Book Info
Infos zum Buch
– Axel Schock: AIDS. Chronicle of a Pandemic. 664 pages. edition suhrkamp 2835. Suhrkamp Verlag. Berlin 2026. Paperback: 28 € (ISBN 978-3-518-12835-0). E-Book: 27.99 €
