Saturday, May 11, 2013
Remembering the Bad Old Days of HIV/AIDS Exceptionalism--and How News from Kansas, an HBO Documentary, and Dancing with the Stars Can Teach Students To See it When it Happens Again
The controversy in Kansas over Sub HB 2183, which was passed into law on April 17th, 2013, puts me in mind of how difficult it is to explain the period of time when "aids specific" laws emerged. My purpose in highlighting this situation is not to get deeply involved in Kansas law or politics. It is pull together some material that may be helpful for teaching public health law to students unaware of the lessons we have learned from the laws proposed, and passed, specifically in response to the emergence of HIV/AIDS during the 1980’s. Without an understanding of the fear and panic that accompanied a disease for which there was no test, no treatment, no vaccine and which quickly killed young, healthy people within months of starting symptoms, it is easy to minimize the risk of such a thing happening today.
What Happened in Kansas
As I understand it, Sub HB 2183 was presented as a statute similar to those in almost every state intended to protect first responders and others who face occupational exposure to infectious
diseases and pathogens. It gives the State’s Department of Health the authority to develop a mechanism for mandatory testing or even isolation of the person who is the possible source of infection
if he is unable to give consent or if no surrogate decision maker can be found. Time is of the essence in these situations and the goal is to provide prophylactic treatment as soon as possible—not to stigmatize the source of infection.
One of the effects of Sub HB 2183 was to eliminate a bill passed in 1986 which specifically prohibited the State from quarantining individuals based on a diagnosis of HIV/AIDS. This led to concerns that people living with HIV/AIDS in Kansas would no longer be protected. Ann Gotlib explains these concerns, and their historical context, clearly in IJFAB-the International Journal of Feminist Approaches to Bioethics.
In an open letter to concerned citizens, the Secretary of Kansas’ Department of Health & Environment explained that “This bill was never about isolation or quarantine related to persons with HIV infection.” Instead, the bill “provides the authority for the secretary…to adopt administrative regulations for prevention and control of HIV in addition to the other specified infectious diseases under current law.” He continues to explain that the Bill reflects an attempt to modernize an old statute from that era, KS 65001, that specifically prohibits the state from quarantining or isolating individuals diagnosed with HIV/AIDS.
Without getting in to Kansas politics and law any deeper, KS 65001 is indeed is a good example of an “AIDS specific” law of that era in that it prohibits the State from quarantining individuals based on a diagnosis of HIV/AIDS. Indeed, according to the Kansas Equality Coalition, the Bill passed based on a compromise that involved creating “a list of diseases ‘not’ subject to quarantine, and to include HIV/AIDS in that list.”
What Kansas Can Teach
Public Health Students Today
Whatever the motivation for the legislation or its effect on
the citizens of Kansas, the controversy deserves attention and study just as would thediscovery of a “living fossil.” It gives us direct access to studying the past.
For anyone else looking for ways to bring that time alive, here are a few words about my experienceincluding a link here and here to what I’ve written before on this topic. We often watch the HBO Documentary, And the Band Played On which is a dramatization of Randy Shiites relativelycontemporaneous account of the same period. Here’s one of my favorite clips. It also seems to be up in its entirety on Youtube—which can’t be OK. Some of the science is wrong--there was no patient zero--but its core as journalistic non-fiction means that the students see the medical, legal, public health, and political context which led to AIDS hysteria and fear. We also sometimes read Kate Scannell’s beautifully written first person account of being a young doctor during that era, Death of the Good Doctor-Lessons from the Heat of the AIDS Epidemic.
A clear example of how even the worst of times fade away is the extent to which today's students miss, the impact of a three minute montage at the end of celebrities who died of the disease and which culminates with a something many of us saw in person in 1996 but which recently had its 25th anniversary, the AIDS Quilt spread out over the Washington Mall.Since so many of the celebrities pictured in the montage died very young, they have not left an impression on this generation. I try to explain that it was like reading weekly of deaths among contests on Dancing with the Stars, Top Chef, American Idol or the Bachelorette. We knew who those people were and how quickly they died.
It's hard to find ways to explain the doubleshock of finding out that many of these young victims were also gay--at a time when outside a few neighborhoods in New York or San Francisco, this was not something they would ever have discussed with their families let alone acknowledged in public. For students living in the a post-Will &Grace World where Portia & Ellen's house is on the cover of Architectural Digest, this is as shocking and hard to understand as the U.S. Public Health Service Syphilis Study at Tuskegee or the decision of parents to send children with Downs Syndrome to institutions like Willowbrook. Much of public health teaching involves passing on the concept of changing times and encouraging the idea that our beliefs and actions today may look very different to us in the very near future.