In 1993, I was a 13-year-old girl growing up in central Pennsylvania. I liked softball, bad action movies, and due to the Scully Effect1 , I wanted to explore a career in medicine. But something happened in this year that changed my perspective from science being the “cool thing that explained stuff” to a multi-faceted discipline with more obstacles and emotions than I ever imagined.
What happened was that I saw And the Band Played On. A film based on the book of the same name, written by Randy Shilts.
Why am I writing about this now? Good question.
I hadn’t thought about this book (or the movie) in quite some time, but I was recently asked at a book event, what my most influential LGBTQ book was?2 This was a complicated question for me to answer. Luckily, my setting in the Philly AIDS Thrift @ Giovanni’s Room jogged my memory and I remembered the profound impact Shilts’s story had on me as a young teen. For those of you who don’t know, the story he wrote about was the early years of HIV/AIDS.
In my introduction, I gave Special Agent Dana Scully props for influencing my science interests. I sorta lied. The main credit goes to my father.
My Dad always encouraged my desire to explore and understand the world around me. As a child, I had a fish tank, a telescope, a microscope, and I could talk to him about his day at the hospital. This is valuable information because it gives you perspective. I may have been young, but I grew up with a firm grasp of the scientific method and an understanding of health.
Or so I thought.
What I didn’t know were the non-science obstacles the gay plague faced. For the younger readers out there, “gay plague” was one of a few names HIV/AIDS had in the 1980s before the virus was given a proper term3. For a long while it was believed that this disease only infected homosexual men, but we know now who HIV infects—anybody4.
Because of unprotected intercourse, shared needles, and unscreened blood transfusions, this was no longer a disease of non-heterosexual men. Children, housewives, and rich people could get it too. Now, people cared.
If only they would have known to be careful…
Politics and science are frienemies. The government has helped science and medicine in numerous ways: the parks system, NASA, the National Institute of Health, etcetera. On the other hand, government and politics have also done a lot of shitty things.
One of those terrible things was how they “handled” HIV/AIDS when it was brought to their attention. What did they do? Not much.
/Time for a Flashback
The year is 1997, Nicholas Cage is killing it at the box office, and I had the opportunity to attend “So You Want to Be a Doctor” summer camp5. During this, one day was set aside for HIV/AIDs education. The year is important because you need to remember that Bill Clinton was slightly into his second term as president during this time. Anyway, we had several speakers this day: many HIV-positive individuals, a few AIDS patients, a few doctors, and a guy I’m going to call “Avoidy McDodge”. Mr. McDodge spoke about the government’s role in funding HIV/AIDS research, but while he spoke, I kept thinking about what I learned from reading (and watching) And the Band Played On.
The opportunity for questions arose.
I made a beeline for the microphone and stood proudly with my bad perm. I don’t remember my exact question, but it went a little something like this, “If President Reagan would have acknowledged AIDS sooner, don’t you think more people would have taken precautions and less people would have contracted HIV?” Avoidy’s response after a pregnant pause, “That’s a very politically charged question.” He added a bunch of words after that and never answered my question.
I know you’re shocked. But I don’t just want to pick on politics.
I won’t knock competition. I believe healthy competition is one of the few ways to really push one’s self to strive for their very best. As a result, everyone receives a better product than they would have without the adversary in place.
I know the vast majority of scientists have the goal of making a discovery that will change lives for the better. However, sometimes that goal becomes lost in the midst of all the competition. This is illustrated beautifully (or terribly) in the quest to understand HIV/AIDS. There is: “I found it first” “I’m not listed as an author” “They used my samples”, and so on and so on.
For a scientist, these are legitimate points to be upset over, because it impacts reputation and funding, but the squabbling still slows down the research process.
Mr. Shilts wrote an incredibly engaging book; however, if you choose to read it (and I hope you do), you should know a few things:
I essentially summarized why And the Band Played On was so important to me and, in the process, discussed some of what is covered by the book. What I wrote is in no way an adequate substitution. Mr. Shilts’s book is lengthy, so if you’re not going to devote time to reading it, please…please, please, please watch the film. It’s choc full of cameo stars and has a very powerful montage at the end.
So, read the book or watch the movie, but please educate yourself or pass on this information because people may discriminate, but diseases don’t.