In April 1984, Secretary of the U.S. Department of Health and Human Services, Margaret Heckler, told a Washington press conference that a vaccine against AIDS would be ready for testing in two years.
Today, more than twenty years after the pandemic began, there is no effective AIDS vaccine ready for distribution. The World Health Organization estimates 40 million people are infected with HIV. Every day approximately 15,000 men, women and children contract the virus, a figure that is soaring as the disease garners momentum in China and India, the world’s most populous nations.
In her new book, Big Shot: Passion, Politics, and the Struggle for an AIDS Vaccine, Patricia Thomas tells the story of the search for an effective vaccine. It is as much a story about politics and money as it is about science and research.
Martha Henry, program coordinator for the Knight Fellowships, asked Thomas about her experiences writing the book.
HENRY: You’ve said that the idea for writing Big Shot came during a morning shower in 1996, when you wondered why you didn’t know more about an AIDS vaccine. When you began work on the book, did you think you would finish it in a couple of years and the last chapter would be about a successful vaccine ready for mass distribution?
THOMAS: These were my expectations — for about five minutes — after the idea first came to me. I quickly realized that in order for the FDA to approve a vaccine for clinical use, it would first have to prove efficacy in a large and lengthy Phase III trial. No such trial had been launched, much less completed, so clearly a vaccine was more than a few years away. As for how long it would take me to do the book, I thought that a couple of years would be enough. In fact, I spent four years on research and writing, plus another year on production and publicity.
HENRY: In the acknowledgements to your book, you thank your editor at PublicAffairs for "her insistence that I simplify the science…" How difficult was it explain the science without overwhelming the general reader? Did the first draft of your book include more science than the final version?
THOMAS: Actually, my editor at PublicAffairs asked me to clarify explanations on about three pages. The heavy lifting had been done, chapter by chapter, by a wonderful freelance editor named Daphna Gregg. Knight fellow Bob Buderi and other experienced authors had advised me to find my own editor, because it was naïve to think that publishers have time for detailed editing. That was terrific advice, and I would say the same to anyone embarking on a science book today.
Daphna didn’t take much science out of the book, but she certainly focused my attention on passages where I needed to do a better job translating unfamiliar ideas and technologies into vivid, everyday imagery. I gave up trying to sound like an intellectual, and shamelessly lifted figurative language from sports, trash fiction, cooking, even "Survivor." One of the nicest things I heard on my book tour was that reading Big Shot made non-scientists — the owner of a retail store comes to mind — "feel smart."
HENRY: How many interviews did you conduct for the book? Did anyone refuse to be interviewed? How willing were people to discuss the back room politics of science funding?
THOMAS: At first, I was just another faceless reporter to the scientists in the vaccine field. But when I kept showing up, meeting after meeting, and when I set up interviews with them not by phone but in their own labs and offices, they began to see me as a traveler in their world and not a mere tourist. The really juicy stuff about money, personalities, and politics seldom surfaced in the initial interview; more likely these things came out in follow-up interviews, email exchanges, or in hotel bars after hours. I taped about 125 interviews, ranging from about one to four hours each, over four years. There were countless informal conversations as well.
During the whole adventure, only one person absolutely refused to talk with me. He didn’t explain why, but he was a former executive with one of the biotech companies I wrote about and his leaving had not been pleasant. Another scientist abruptly canceled an interview after obtaining my book proposal from a potential buyer. He didn’t like how he was portrayed in the proposal, so I told him the best remedy was an on-the-record interview. Fortunately, he agreed.
HENRY: You were one of the first volunteers to be injected with an experimental DNA vaccine for AIDS in a Phase I trial at the National Institutes of Health. The trial was to determine if the vaccine was safe and if it stimulated an immune response. Some journalists would say that you crossed a line when you became personally involved in the subject you were covering. Was participating in the trial a hard decision to make? Did any of your colleagues advise against it? Was the NIH wary of your participation?
THOMAS: I’ve been a journalist for so long that I didn’t feel the need to get an ethics reading from anyone on this. My research showed that the world would be far closer to having a successful HIV vaccine if more candidate products had been tested in more people over the years. I volunteered for this trial because it was something that I could do, as an individual, to move us one step closer to that goal. I got the first shot before the book was even acquired by PublicAffairs. Agents and editors urged me to write about my experience in Big Shot, but I took the old-fashioned view that the reporter is not the story.
HENRY: What kind of commitment did the trial entail?
THOMAS: I traveled from my home near Boston to Bethesda 17 times over slightly more than one year. Volunteers in this study were asked to arrive the night before the clinic appointment, which began early in the morning and finished around lunchtime. Although NIH paid airfare plus a small per diem for housing and meals, this fell short of what it costs to stay in a one-star motel and dine on a burrito and a beer. Only people with considerable autonomy in their working life, who can subsidize the travel, can afford to volunteer.
HENRY: There are a lot of big egos among the scientists in your book. Do you think a big ego is necessary to accomplish big science?
THOMAS: Clearly an AIDS vaccine isn’t the only "big shot" in my book — I write about lots of guys, and I do mean guys, who are not troubled by self-doubt. I’m not quite sure what big science is, but when a successful AIDS vaccine is developed, it will be the result of a million small steps. This vaccine search is a marathon, and most of the scientists and developers who have a chance of going all the way are not egomaniacs, narcissists, or even household names. Big egos have hurt this endeavor more than helped it.
HENRY: As in any situation in which large sums of government money are at stake, there were competing interests in how to best spend money earmarked for AIDS research. How well do you think the press covered this story? Were certain factions more adept at manipulating the press?
Pat Thomas
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| Pat Thomas |
THOMAS: Coverage of basic science and of HIV treatment research has dwarfed coverage of vaccine research and development, and for good reason. The horrific spectacle of previously healthy people wasting away and dying hideous deaths made the urgent need for treatment unmistakable. And the community of college-educated, mostly white gay men who spearheaded AIDS activism succeeded brilliantly in drawing media attention to the needs of infected people.
There has never been an outspoken, media-savvy constituency representing healthy people who stand to gain from a vaccine that prevents AIDS. I think this is just human nature — we take health for granted when we’re healthy. The past five years have seen the birth of the International AIDS Vaccine Initiative, which has the Gates Foundation as its biggest benefactor, as well as the rise of some small advocacy groups focused on the need for vaccine testing and research. Also some of the big name scientists, such as David Baltimore, Tony Fauci, and Bob Gallo have become more closely allied with the vaccine effort. But they remain more interested in basic science related to vaccine design than in expanded clinical testing of candidate vaccines.
The good thing about limited press coverage over the years is that it left me a lot of great material and untold stories for my book.
HENRY: Your book ends with VaxGen, a California biotech company, beginning Phase III trials on AIDSVAX, a somewhat arbitrary stopping point. How did you decide when to stop working on the book?
THOMAS: I don’t see the ending of Big Shot as arbitrary. The conflict between rational vs. empirical approaches to vaccine development is central to the narrative, and the 1994 stand-off over a tax-supported Phase III trial hurts some characters and helps others. So when a tiny biotech launches the world’s first Phase III trial, without any significant NIH support, that is a major step toward resolving the dramatic conflict. I worked hard to chisel out a story with a satisfying beginning, middle, and end.
As for the timing of Big Shot’s release, that stemmed from my contract with PublicAffairs. The manuscript was due at the end of 2000, and final results of the VaxGen trial won’t be available until November 2002. So there really was no way to wait, though perhaps I’ll get to write an epilogue at some point. As it turned out, September of 2001 was a terrible time for this or nearly any other book to come to market.
HENRY: How did you celebrate finishing your book?
THOMAS: In November I threw a huge party for some of the many people who put up with me during the five years I worked on this project: friends and loved ones who tolerated my endless obsessing, tennis partners who helped me blow off steam, writers and editors who served as reality checks.
HENRY: What are you working on now?
THOMAS: I can’t seem to shake my belief that a vaccine to prevent AIDS is one of the world’s greatest public health needs. So I’m doing some writing and consulting for the AIDS Vaccine Advocacy Coalition, as well as lecturing about my book and about the topic in general.
I’m also writing magazine articles about other types of biomedical research, which is a refreshing change. After spending five years on one project, it’s wonderful to take on jobs that can be wrapped up in a few weeks or months!
Pat Thomas has written about medical research for years. She was a 1986-87 Knight Science Journalism Fellow. While at MIT, she studied molecular biology, physiology and virology. From 1991-97 she was editor of the Harvard Health Letter. In 1998 Thomas was awarded the Leonard Silk Journalism Fellowship for Big Shot, a work-in-progress at the time.
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