It was October 1996 when the idea of writing a book about AIDS vaccines came to me during an early morning shower. I was working on a Harvard Health Letter story about the year’s top medical advances, and high on the list was the dramatic, life-saving impact of new drug cocktails for HIV/AIDS. I remembered the early 1980’s, when many journalists weren’t sure we would ever be writing a good news story about treatments for this horrible new disease. Now that scientists had accomplished this miracle, why didn’t we have an AIDS vaccine—a product that could protect against HIV infection in the first place?
I never imagined that answering this question would consume the next five years of my life. Nor did I anticipate that in this story, science would be inextricably linked with big business and with politics on a grand scale. Because of this story’s expansive context and my decision about how best to tell it, my book, “Big Shot: Passion, Politics, and the Struggle for an AIDS Vaccine,” would be unlike anything else I had written.
Reading the scientific literature is always a good place to begin such a reporting journey. Journal articles and related news coverage led me to conceive of this story as a man vs. bug tale, in which the central issue was the technical challenge of making a vaccine against a highly mutable virus that attacks the very cells meant to defend against infection. I put together a list of leaders in the field and hit the road with notepad and tape recorder, going to scientific conferences and setting up interviews at companies, universities and government laboratories.
From the start, experts wanted to talk about a lot more than the scientific difficulties of designing HIV vaccines. Dozens of people told how politics, money and the culture of science itself had all been roadblocks to vaccine development. And, without my asking, they all brought up an event in June 1994, when the National Institutes of Health (NIH) pulled back from what was expected to be the world’s first efficacy trial—a clinical study large enough to demonstrate whether either of two vaccines could protect thousands of high-risk volunteers against infection.
NIH’s decision was applauded by researchers who thought these specific vaccines were worthless. The products’ sponsors vehemently disagreed. Others in the field were angry with NIH’s decision because the reaction of many drug companies was to downsize or cancel their HIV vaccine programs, believing that the government could not be trusted as a business partner. Regardless of where vaccine insiders stood on the wisdom of this decision, they couldn’t stop talking about it. They agreed about only one thing: Eventually, huge clinical trials would be needed to arrive at a safe, effective vaccine to prevent AIDS.
At this point, I was six months into my research. Although no experimental AIDS vaccine had yet entered an efficacy trial—the final step in clinical testing—dozens had been tested in small Phase I trials aimed at demonstrating safety. This is of paramount importance because vaccines, unlike therapeutic drugs, are given to people who are healthy. It seemed to me that the world would be far closer to having a vaccine to prevent AIDS if more candidates had been tested in more people earlier on. I knew this was going to be an important theme in whatever I wrote, although I hadn’t a clue where it would fit in.
About this time I heard that researchers at the NIH Clinical Center were enrolling volunteers in a Phase I test of a new kind of vaccine against HIV. DNA vaccines were the hot technology of the moment; I had interviewed the inventor and understood the product, and I was game to enroll myself in this trial. My family was opposed because they didn’t want me to be a guinea pig, and some friends thought it was inappropriate for a journalist to become involved a story in such a personal way.
After three decades in journalism, I was certain that I could tell the stories of competing research teams in a fair-minded way, even if I had rolled up my sleeve for a product made by one of them. So I went ahead with the trial and got my first shot during Thanksgiving week of 1997.
“The Extraordinary Adventure That Is Science Writing”
– Jon FranklinThat same week, the auction of my book proposal was a dismal failure. I had pushed aside a mother lode of material about power and money and politics and stuck to my preconceived notion of a man vs. bug story. At the same time, my agent had urged me to write a first-person narrative in which my participation in the vaccine trial would be front and center. My proposal was a mishmash of technical jargon and reluctant memoir. “Why would anyone want to read this?” editors asked me, when my agent and I cabbed from one publishing house to the next in New York. Apparently, I didn’t have a good answer.
In an article about narrative journalism, Pulitzer Prize-winning science writer Jon Franklin once advised reporters to tell the story they have, not the story they wish they had. With his words posted on the bulletin board over my desk, I once again burrowed into my files and 11 months of notes from interviews and scientific conferences. There was a dramatic story embedded somewhere in all this material, and it wasn’t simply about AIDS vaccines. There were larger points to be made about how science was done—and not done—in late 20th century America.
Narrative was an obvious tool for approaching such a story, but what did I know about narrative? Accustomed to working as a traditional, “just the facts, ma’am” science writer, my carefully prepared questions had delved into the minutia of AIDS vaccine research. I almost never asked about a person’s hopes or fears or about how anger and elation played out in the lab, clinic, or boardroom. My notes about settings where the action took place, or about how people looked, weren’t especially vivid.
So I set off again, to gather the reporting I’d need to create a narrative thread. It took nearly another year for me to re-interview dozens of sources, going for story as well as substance, and to incorporate this material into a second book proposal. This one fared much better than the first. Over the next two years, as I worked to finish “Big Shot,” my interviews probed both the science and the scientists, and the financial and political pressures that shaped their work. In the end, this turned out to be a story with lots of colorful characters, some laughs, a few tears, a dash of suspense, and some appalling behavior by people who should know better.
What the book does not contain is a single word about the trial I participated in at NIH. Eventually the study coordinator called to say I had gotten the vaccine, not the placebo, and that it appeared safe but otherwise not very promising. Although I jumped on the narrative train and hacked away at the spaghetti tangle of science, business and politics, I never wrote about my personal experiences as a vaccine volunteer. Still a traditionalist at heart, I stuck with the old-fashioned view that the reporter is not the story.
Patricia Thomas is the visiting scholar at the Knight Center for Science and Medical Journalism at Boston University for 2002-2003 and is the former editor of the Harvard Health Letter. Her book, “Big Shot: Passion, Politics, and the Struggle for an AIDS Vaccine” (PublicAffairs, New York, September 2001) won the Leonard Silk Journalism Award as a work in progress.