HIV/AIDS Research: Its History & Future Meeting
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Victoria Harden: [00:00:00] I'd like to thank the organizers for inviting me, but much more importantly, I want to thank them for hosting this meeting. I don't know when in the future we will have this many luminaries in AIDS research assembled under one roof. Thinking about the next panel, I personally want to [00:00:30] encourage the organizers to get these proceedings published because I think it will be extremely important. For myself, personally, it has been a great pleasure to become reacquainted with and to meet in person, for the first time, what I think of as many of my footnotes.

It is also appropriate that I have been asked to be the final speaker as a historian because [00:01:00] as we all know, in the long run, historians always have the last word. Historians take a long view of events, often surveying centuries rather than decades. To begin this talk, let's compare the story of medicine's role in three major historic pandemics. When the Black Death ravaged Europe in the 14th [00:01:30] century, the plague doctor, in his hazmat suit featuring herbs through which to breathe to avoid the presumed plague-infested air, could do little for victims. People knew that the only hope for avoiding the plague was to flee to the countryside.

When pandemic influenza struck six centuries later in 1918, medicine did understand airborne transmission and various theories argued [00:02:00] for bacterial or viral causation. But lacking the tools to identify the cause, medicine could only offer symptom alleviation and public health warnings.

Astoundingly, in contrast, when HIV/AIDS struck, medicine was able to identify its cause and develop diagnostic tools and therapeutic interventions that within 15 years [00:02:30] transformed the disease into a controllable chronic condition. In my allotted time, I want to reflect on how the history of HIV/AIDS has already been told and how it will be retold in the future when none of us are still here to tell the story.

First, I want to emphasize that there is no such thing as a single exhaustive history of AIDS. The [00:03:00] story of AIDS is like a colorful marbled cake. One can cut through it in many different ways to tell specific parts of the story. Writers of history also have personal interests and biases that may lead them to emphasize or ignore particular aspects of the story. Just choosing which facts to include means leaving out others so the notion of some all-encompassing definitively [00:03:30] true history of the epidemic is unrealistic. Historians of the future will begin with the evidence that we leave behind as they attempt to synthesize and write their own histories.

I want to look briefly at the five types of histories I have listed here that have already been written and suggest what you can do to ensure that the parts of the egg story you think are important will be among the materials available [00:04:00] to historians of the future. Media presentations about the epidemic overwhelmingly focus on the human suffering caused by the HIV/AIDS and the heroic stories of community activists in the face of prejudice. They capture an important theme of the epidemic. They emphasize how the conservative political climate of the 1980's delayed passage of legislation to help people with AIDS. They address homophobia [00:04:30] in society and they tell stories of how brave individuals struggle to help those with AIDS. Medical personnel, however, particularly, public health officials, medical researchers and regulatory officials are often portrayed as slow to help or even obstructionist. I was most recently stunned to see, for example, at the end of the movie Dallas Buyer's Club, a statement in the passive voice [00:05:00] that quote—something I'm paraphrasing—but "effective therapies were eventually developed"—as if this was just something to be expected and, really, it wasn't very important. (1)

There have been a number of books focusing on more narrow aspects of the epidemic. Jim Kinsella's book was the first to analyze how the media portrayed the epidemic such as the problems it faced in talking about sexual transmission on television. (2) One [00:05:30] particular example he cited was the 1985 ABC interview with Tony Fauci in which journalist George Strait got Fauci to speak the words "anal sex" so that Strait didn't have to say them himself.

Science journalists did a yeoman's service in translating highly technical details into understandable language for the non-scientist. My colleague Jon Cohen's history of the effort to produce an AIDS vaccine is one fine [00:06:00] example of this. (3) Historians expert on individual countries have scoured them for evidence about AIDS history as John Iliffe did for the entire continent of Africa. (4) Scientist authors who undertake to write for the public also contribute to a broader understanding of particular aspects of the story as Canadian Jacques Pepin did in his book on the origin of AIDS. (5)

Next, I want to turn to personal [00:06:30] memoirs. Here, we see the memoirs written by Bob Gallo and Luc Montagnier (b. 1932) about the research on identifying the AIDS virus. (6, 7) Four others, which tell us about the epidemic from different perspectives are Randy Shilts' (1951–1994)early very moving account (8), Larry Kramer's (1935–2020) caustic stories (9), Abe Verghese's (b. 1955) narrative about AIDS in rural America (10), and Peter Piot's account of UNAIDS's effort to confront the global epidemic. (11) [00:07:00] Via each individual author's point of view, each book illuminates one particular aspect of the story.

I have to stop, though, and note that all the authors of these books are male. We are missing the female scientist's point of view still at this time.

I must also mention the discredited writings about the epidemic because they exemplify a well-known historical [00:07:30] occurrence. That is, that when medicine cannot provide preventatives or therapies that clearly halt the epidemic, alternative theories and practices will appear and thrive. In the story of HIV/AIDS, Peter Duesberg's (b. 1936) challenge that HIV as the cause had profound consequences in delaying the adoption of antiretroviral therapy especially in South Africa even after it was demonstrated effective. (12) The website virusmyth.com continues [00:08:00] to perpetuate the Duesberg theory online, although its reach has been much diminished since combination therapy was introduced in 1996. A rigorously researched book by British journalist, Edward Hooper (b. 1951), reflects a different kind of discredited writing. Hooper suggested in great detail how the pandemic originated in contaminated polio vaccine administered to Africans between 1957 [00:08:30] and 1960. (13) Later examination of stored vaccine samples, however, demonstrated that they had not been contaminated, thus demolishing his argument.

On the fringe of the debate, we saw the conspiracy theories. The earliest of these circulated in 1983 and then suggested that the CIA had manufactured AIDS. Alan Cantwell (b. 1934), a retired dermatologist, believed that because no formal history—[00:09:00] no formal history, that needs to be done—of the National Cancer Institute's virus cancer program had been written and published. The program must have been a secret government program that served as cover for the development of HIV. Since NCI has laboratories at Fort Detrick, Cantwell argued that this was conclusive proof that HIV was being prepared as a biological agent, biological warfare [00:09:30] agent.

Turning to scholarly historical overview studies of the pandemic. The first account was by French physician/historian, Mirko Grmek (1924–2000) in 1989. (14) In his narrative, Professor Grmek emphasized the nationalistic rivalry between France and the United States in the race to discover the cause to virus. He argued his own theory of pathocenosis that diseases in the world seek equilibrium. [00:10:00] This theory postulated that perhaps it was the elimination of smallpox in 1980 that destabilized the disease equilibrium and allowed HIV to emerge.

Writing from a postmodern view that disease per se does not exist, that all diseases are socially constructed, was the book by sociologist Steven Epstein Impure Science. (15) It was published [00:10:30] in 1992. At the time, AZT toxicity was being assailed, and before any effective therapy had been developed. This book and others like it reflect the emphasis on postmodern analysis in academic medical history circles. As physician/historian Howard Markel (b. 1960) noted, however, it's easy just to say that disease is socially constructed until you happen to find yourself in bed with one. In my own view, I think HIV/AIDS dramatically [00:11:00] paid to the notion that in fact, infectious diseases were not real entities.

Jonathan Engel's book The Epidemic takes a broader historical approach, but it's light on scientific history and stronger own policy and cultural events. (16) For my own book, my goal was to explain how the intellectual models of molecular virology and immunology that were emerging in the late '70s and early '80s guided the biomedical community [00:11:30] in understanding and addressing AIDS. (17)

This brings me to one serious concern about how AIDS history has been and will be written. I see a large gap between how scientists tell the story and how some humanists do. Some of you may recall that in 1959, C.P. Snow (1905–1980), the Cambridge physical chemist and novelist, bemoaned what he saw as the two cultures science [00:12:00] and the humanities, because the gap between them was a hindrance to solving the world's problems. 

Sadly, the split has continued and perhaps widened as each camp writes for its own audiences. My examples here are the 2011 fine historical article by senior CDC officials, but it's published in Emerging Infectious Diseases for clearly an audience of scientists. (18) In contrast, I offer a completely non-scientific, [00:12:30] quick look at a listing of one page of dissertation abstracts in the humanities and social sciences on the subject of HIV/AIDS. If you can read the titles, you realize that none of these dissertations require a lot of detailed scientific knowledge. They're aimed at an audience of their peers in the humanities and social sciences. This is all fine but someone needs to bridge the gap. I believe that scientists have reached [00:13:00] across the gap more successfully than humanists, but both groups need to aim work at broader audiences.

Where does this leave us in thinking about sources for the future histories about HIV/AIDS? It hasn't happened yet but maybe someday, there will be a Ken Burns (b. 1953) type documentary about biomedical research on AIDS. What evidence will be available for producing such a film or for the written histories that [00:13:30] will certainly be produced? Since AIDS research spans the paper-digital divide I fear that much of the early email correspondence reflecting collaborations and projects has already been lost.

Victoria A. Harden is a historian of medicine and author of AIDS at 30: A History (2012). She was Director of the Office of NIH History and the Stetten Museum at the National Institutes of Health from 1986 to 2006.


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More successful have been efforts to collect oral histories of the epidemic. In the late 1980s I began in interviewing scientist at NIH when I realized that no one else was systematically documenting the NIH response [00:14:00] to a new pandemic disease. A colleague on the West Coast, historian Sally Hughes compiled a wonderful oral history resource on the epidemic in San Francisco. Similarly, the activist organization ACT UP has been compiling oral histories from community activists and making them available on its website. Historians Gerald M. Oppenheimer and Ronald Bayer interviewed New York physicians for their book on AIDS doctors. (19) [00:14:30] Their original interviews are available to scholars on request at Columbia University, but not publicly accessible.

Recently, I am delighted to report the Centers for Disease Control and Prevention have launched an oral history project with their personnel who were on the ground in the early years of AIDS. These represent just a few oral history collections. What is yet missing are systematically collected oral histories from [00:15:00]many other countries in the world. Archives and museums will also be the sources of information for future histories of AIDS.

What is in them depends on who donates. My colleague on this session, Stephen Hildebrand has already shown you some of his work with the Face of AIDS archive. My other colleague Jon Cohen has himself donated the research materials for his book to the University of Michigan. [00:15:30] The NAMES project, archived panels of the AIDS Quilt, and can make them available for study and exhibits.

The collections of the Stetten Museum at NIH to cite the example that I know best holds artifacts as varied as a bottle that contained original AZT tablets and a book of children's drawings about AIDS from the NCI pediatric AIDS Ward, as well as scientific instruments used in AIDS research. [00:16:00] The National Library of Medicine holds a wonderful collection of AIDS education posters from around the world collected by Bill Helfand Some of you may know he was a Merck executive until he retired.

To end I want to suggest what you should do to ensure that the history of HIV/AIDS will have available evidence of how [00:16:30] the biomedical community in our time address this pandemic. Future historians will not read every single one of your fine publications documenting the step by step accrual of knowledge about HIV. They need guidance about how you thought about your work, with whom you collaborated, what the difficulties were as well as the successes. They will want to know about the process, not just the triumphs. [00:17:00] 

To get at this, you should sit for an oral history if you haven't done so already. Perhaps the most important task, though onerous you will think for you is to organize your unpublished documents, scientific notebooks, emails related to your research, your photos, your artifacts, and donate them to an archive or museum.

I hasten to add, you don't have to do everything [00:17:30] at once and it doesn't have to be perfectly organized. That's what archivists do for you. These archives and museums are sometimes thought of as dry dusty places that scientists occasionally like to make fun of, but they are the repositories that will preserve the evidence of your work long after all of us have departed this life.

If you're able and willing pull your story together [00:18:00] into an article or personal memoir, and get it published. The bottom line here is that you should not think, "Yes, yes, I'll do this when I retire." We're all working a lot longer these days and you may not retire until you are so physically or mentally diminished that you no longer have the stamina to do the job. What does not get saved goes into history's black hole, never to be written about again. [00:18:30] I encourage you to take action now so that the scientific story of HIV/AIDS will be available to the future. Thank you.

[applause]

[00:18:49] [END OF AUDIO]


(see http://www.actuporalhistory.org/index1.html)

Citations

  1. Vallée, Jean-Marc. Dallas Buyer’s Club. Focus Features, 2013.
  2. Kinsella, James. Covering the Plague: AIDS and the American Media. New Brunswick: Rutgers University, 1989.
  3. Cohen, Jon. Shots in the Dark: The Wayward Search for an Aids Vaccine. New York: W.W. Norton, 2002.
  4. Iliffe, John. The African AIDS Epidemic: A History. Athens: Ohio University Press, 2006.
  5. Pepin, Jacques. The Origins of AIDS. Cambridge: Cambridge University Press, 2011.
  6. Montagnier, Luc. Des virus et des hommes. Paris: Odile Jacob, 1994.
  7. Gallo, Robert C. Virus Hunting: AIDS, Cancer, and the Human Retrovirus : A Story of Scientific Discovery. New York: New Republic, 1991.
  8. Shilts, Randy. And the Band Played On: Politics, People, and the AIDS Epidemic. New York: St. Martin’s Press, 1987.
  9. Kramer, Larry. Reports from the Holocaust: The Making of an AIDS Activist. 1st ed. New York: St. Martin’s Press, 1989.
  10. Verghese, Abraham. My Own Country. 1st ed. New York: Simon & Schuster, 1994.
  11. Piot, Peter. No Time to Lose: A Life in Pursuit of Deadly Viruses. 1st ed. New York: W.W. Norton & Co, 2012.
  12. Duesberg, Peter H. Inventing the AIDS Virus. Washington, D.C.: Regnery Publishing, 1996.
  13. Hooper, Edward. The River: A Journey to the Source of Hiv and Aids. Boston: Little, Brown and Co., 1999.
  14. Grmek, Mirko D. Histoire du sida: début et origine d’une pandémie actuelle. Médecine et sociétés Payot. Paris: Payot, 1989.
  15. Epstein, Steven. Impure Science: AIDS, Activism, and the Politics of Knowledge. Medicine and Society. Berkeley: University of California Press, 1996.
  16. Engel, Jonathan. The Epidemic: A Global History of AIDS. New York: Smithsonian Books/Collins, 2006.
  17. Harden, Victoria Angela. AIDS at 30: A History. 1st ed. Washington, D.C: Potomac Books, 2012.
  18. De Cock, Kevin M., Harold W. Jaffe, and James W. Curran. “Reflections on 30 Years of AIDS.” Emerging Infectious Diseases 17, no. 6 (June 2011): 1044–48. doi:10.3201/eid1706.100184.
  19. Bayer, Ronald, and Gerald M. Oppenheimer. AIDS Doctors: Voices from the Epidemic. Oxford: Oxford University Press, 2000.

 

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