CHMP

To: Steven Soderbergh

From: Steve Gorelick

Re: Your Film Contagion

Date: November 27, 2011

I am about to watch Contagion.

For many years, any film having to do with large-scale epidemics or catastrophes would have automatically attracted my interest. And knowing that you are the director of Contagion would normally have had me in the theater weeks ago. Ever since Sex, Lies, and Videotape, I’ve come to admire your raw and honest take on the character flaws that are at the very core of the human condition.

But you’ve also made some wonderfully frenetic, high-energy blockbusters, and I hope you won’t be insulted when I tell you that I am least a little jittery at the thought of seeing a film about a global pandemic done by the creator of Ocean’s 11. I love a good caper film, and I really loved yours. But I have a special interest in the stories and narratives of large-scale epidemics and other catastrophes, and I’m just a little on edge at the thought of what you might do with the very real threat of a pandemic. But you were the guy who made one of my favorites — Erin Brockovich — so you’ve more than earned my attention. I’m going to watch. Read the rest of this entry »

Steve Gorelick is Professor in the Department of Film and Media Studies at Hunter College of the City University of New York. For close to two decades, his undergraduate class at Hunter College, Myths and Images, has focused on the representation of HIV/AIDS and other health issues in media and culture.

Last week, right in the middle of an undergraduate course I teach – Disease and Disaster in Media and Culture — my students and I found ourselves smack dab on the site of the Hunter-Bellevue School of Nursing.  And, as if this didn’t come as enough of a surprise, we found ourselves there on a hot and humid summer day in 1897.

We have been reading a wonderful new book by Paul Collins – The Murder of the Century:  The Gilded Age Crime That Scandalized the City and Sparked the Tabloid Wars — an account of the legendary Guldensuppe love-triangle murder of 1897.  New York newspaper readers literally learned about the case “piece by piece,” as body parts of the victim began appearing at various sites around the city.

So how did our class end up on the site of the building now housing the site of our very own Center for Health Media and Policy?

The latter decades of 19^th century marked a major turn toward empiricism in criminology. Physicians and scientists interested in crime began the practice of extensively collecting, categorizing, and analyzing both social statistics and physical evidence in an effort to understand who did bad things and why they did them.  This turn toward evidence was significant, but the evidence gathered was most often guided by absolutely nutty theories hypothesizing, for example, connections between facial features and criminal behavior.

During the months in 1897 that the story of the Guldensuppe murder captured public attention, the epicenter of cutting-edge knowledge in forensic criminology was New York City’s Loomis Laboratory. The presiding expert, the legendary Dr. Rudolph Witthaus, Professor of Chemistry and Toxicology, discovered key evidence in the case. I would love to tell you more about the Dr. Witthaus’s amazing combination of toxicological innovation and mind-boggling weirdness, but I would not want to spoil a great read. Let’s just say that, while the Loomis Lab might have been the center of respected knowledge in forensic science, some of what passed for respected scientific orthodoxy was – well – simply wacky.

As I often do when my students and I examine a historical event and location, I plugged the address of the Loomis Lab into Google Maps so we could see the current appearance of the long-forgotten site.  And this is the picture that was projected on the screen.

The Loomis Lab at 410 East 26^th Street was on the site of what is now the Hunter-Bellevue School of Nursing. After a few moments of mental time-travel, in which I actually found myself giggling at the thought of Diana and Barbara as mad scientists creeping around a musty 19^th century lab, something more serious came to mind.

At any stage in history, society has tended to look to the most legitimate and respected institutions and publications for cutting-edge knowledge about health and medicine. These institutions carry enormous symbolic legitimacy. While this legitimacy might on occasion be exaggerated and oversold, no small part of it is a function of having actually advanced knowledge, discovered effective treatments, and vastly improved patient care.

Thinking about the erudite Dr. Witthaus, though, and some of his nutty practices (not to mention his own involvement in nefarious activity),  reminded me of the extent to which we often allow ourselves – impressed with a veneer of symbolic legitimacy — to give a pass to scientific findings that deserve — no, require – serious, informed, and skeptical scrutiny.

An American Journal of Nursing, JAMA or Lancet or SCIENCE article, for example, should seriously engage our attention.  But the public seems to forget that science is not theology, and that these publications are not Holy Scripture reporting settled wisdom.  Findings are contributions to an ongoing and evolving scientific discussion and invitations to disagree and present contradictory evidence.

Unfortunately, such high-profile “certified” findings are often reported as the end of debates rather than the start of discussions. The result might be that subsequent findings on the same problem in the same publication are ignored.

One fascinating current example is the continuing debate that began in October, 2009 with the publication in SCIENCE of an article reporting the detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome.  Rather than seeing all the subsequent controversy and contradictory findings as science at its contentious and skeptical best, the whole episode has been reported as evidence of failure and confusion.

Is it unrealistic to wish that a public with more sophisticated health science literacy might see this confusion as precisely how we hope our science will unfold – occasionally definitive, but more often an ongoing process of steps and missteps, advances and setbacks?

Awe is not always a bad thing. I confess to following science like baseball, and am the kind of nerdy guy who can instantly summon several names of researchers for whom my awe is boundless. Check out the work of three of my many “all-stars,” — Susan Mango, Barry Marshall, and Robin Warren.

The point, though, is that awe – of individuals, institutions, publications — should never lead us to end debates or hold back healthy skepticism. Skepticism in science is an act of profound respect, not heresy.

This post was written by CHMP Senior Fellow Steve Gorelick who is Professor in the Department of Film and Media Studies at Hunter College of the City University of New York.

Author’s Note: When I first shared this childhood reminiscence of illness and death with Diana and Barbara, they asked the perfect question.  How does this connect to health policy? Then, with the kind of wisdom they seem to have in unusual abundance, they made a suggestion that I found absolutely persuasive.

Our very personal episodes of disease and death seem to occupy some of the most prominent and conspicuous places in our life narratives.  When they occur in childhood, they can take center stage and touch the very core of how we ultimately see ourselves as human beings. Small, sensory memories – perhaps the smell of alcohol used in an emergency room to clean a wound – can loom for years and continue to define our memory of ourselves at a specific time and place.

What I now see is just what an extraordinary problem this presents to anyone hoping to influence public health attitudes and policy. The messages we deem so important to public well-being   –related to nutrition, fitness, timely immunizations, PSA tests, mammograms, pre-natal care and all the rest –  have to do infinitely more than simply make sense and be supported by evidence.

They must penetrate nothing less than the most basic and profound narratives of how we see ourselves and our place in the world.   Even the simple decision to get a flu shot must joust with a host of memories of injections past, of unwelcome side-effects, and high-profile news stories of vaccines that may have been ineffective and even dangerous.  Suddenly a simple decision competes with a lifetime of experiences.  Not so simple.

What follows, then, are some of the experiences that still define who I am and how I remember and  imagine “the land of the sick.”

I have been trying to think of a way to tell you a story.

Travels in the Land of the Sick

And at some point, I remembered a wonderful essay written almost 25 years  ago by Paul Cowan. (“In the Land of the Sick,” The Village Voice, May 17, 1988). Paul, a wise man who was much too young when he died of leukemia, envisioned illness as a destination, a land of exotic customs and practices inhabited by the sick. The rest of us, he warned, were simply the “not yet sick,” travelers on an unpredictable yet inevitably  bumpy and painful road.

This is the world I have been navigating, as son and as son-in-law, as companion and as final witness.

It started last spring in the midst of a perfect storm of seriously ill parents, friends of parents, and the not unexpected, yet still shattering, death of the 10-year-old daughter of close friends. That her ten years were spent on a neurological and septic tightrope with a constant risk of potentially fatal infection didn’t even slightly lessen the pain of her loss.

What a strange trip to a strange land, traveling from one wrenching scene to another, from one city of the aging to another, from the slow suffocation that is chronic pulmonary disease to the encroaching dementia of Alzheimer’s Disease; from kidney failure to virulent and unforgiving pneumonia.  And overshadowing it all has been the larger human drama of watching this far-flung cast stripped of all the  self-deception that had long enabled them to imagine that they might never have to book passage. Yet there they were, well on their way, and no stories they could tell, no folktales or myths, could shield them from a slow-motion collision with their own fragility.

What I didn’t expect was that their collision would become mine.

Last May, standing at corner of Rowland and Lark Ellen Avenue in West Covina, California, I found myself surveying Rowland elementary school, a typical 1950s building in which I had attended kindergarten, third, fourth, and fifth grades. Instantly familiar were the two separate kindergarten classrooms at one end of the long block that, in 1950s style, had been walled off from the rest of the school.  And despite my struggle to stay an outsider amidst the failing kidneys and diseased lungs, I realized that, despite my “Wonder Years” fantasy, West Covina had been a place in which I too had once briefly been a traveler among the sick.

I stared across the street at the swings and noticed that they were in precisely the same place they had been on an overcast day in 1956, when my class of five and six-year-olds stood in line for polio vaccinations. I can’t recall the faces of the other kids, but the memory of all the mothers, lined up and looking on with anxious and relieved expressions — is vivid. I knew virtually nothing about the scourge that was polio, but I did know that my friend and classmate Robin Miele would not be receiving the vaccine because of the polio that had already withered one of his legs and one of his arms.

I wasn’t exactly thrilled to recall the pain of the injection, the anxious faces of the hovering mothers, and Robin’s grotesquely shaped leg.  For years, I had fought the idea that illness could define this idyllic place. This was where I had lived the moments that had been securely stored in files marked “hope and energy,” “teasing and flirting” and “stirrings of desire.” But some  memories are annoyingly insistent, and with hardly a thought I wandered down Rowland Avenue, away from my elementary school, in the direction of our small house on Hartley Street a half mile away.

I remembered. My mom and dad chose a doozy for our inaugural journey in the land of the sick. Read the rest of this entry »

Steve Gorelick is Professor in the Department of Film and Media Studies at Hunter College of the City University of New York.

photo credit/livestrong.com

Some of the most fundamental and taken for granted cultural assumptions are the hardest to question.  Why?  Because “they” said they are true.

These are the assumptions that my Mom and  Grandma used to always attribute to “they,” the mystical font of all wisdom and patron saint of unsubstantiated claims. “They”  knew what caused colds, what foods were good for you, and seemed to have genuine insider knowledge about why it was important  to wait  a half hour after eating before swimming. I remember being a happy yet stubborn 9 year-old, arguing some point with  my grandma, and instantly holding up the white flag when she was able to cite some evidence that “they” had reported. It simply didn’t matter that  the information provided by “they” came from everything from supermarket tabloids to long-departed relatives.  “They” knew what “they” was talking about!

“They” was on my mind today.

Within only several years, the problem of sports-related concussions and head trauma has become a topic of wide discussion and concern. Today on NPR’s Fresh Air, former All-Ivy league lineman, pro wrestler, Harvard graduate, and head trauma activist Chris Nowitski discussed his crusade to raise awareness about the potentially lifelong and debilitating effect of repeated head trauma. His foundation, The Sports Legacy Institute, focuses on the study of the degenerative brain disease Chronic Traumatic Encephalopathy, or CTE, a condition caused by repetitive concussive and sub-concussive brain injuries.

Listening to the interview reminded me of two things: First, I recalled that my freshman year of high school was marked by a painful and angry argument between my Mom and me about whether I could play football. I wanted to play. I lost. She was probably right.

But my other thought today was the absolutely ridiculous and even humorous way that  head trauma is depicted in popular culture. People are knocked unconscious in staged fights and immediately regain consciousness. Cowboys and cops and criminals are constantly being punched, dropping to the ground, and quickly waking up with little effect. In fact, in physical humor and slapstick, the very act of being knocked unconscious is presented as the zenith of hilarity.

In “they-land,” the Three Stooges can smack and poke and punch each other’s head endlessly, and the laughter only gets louder.

It’s not  that 1) some of this isn’t genuinely funny or 2) that it is something requiring censorship. I will, though, suggest that one result of all this consequence-free theatrical punching and poking is that the long-term consequences of sudden head trauma  have largely been buried under all the comedy and action-packed scenes in film and television. The conventions and constraints of popular entertainment simply leave no room for the variety of short and long term symptoms of real-world  concussions.

When is the last time you watched a crime drama, saw  a bad guy get knocked out, and then watched him wake up with any of the actual symptoms of a serious concussion – vomiting, memory loss, a seizure, vision problems, etc?  Never.  Because “they” knows that all these complications would simply clog up and slow down a good police procedural.

My point is simple:  the facts about the effects of repeated head trauma from football and boxing are slowly emerging in a number of longitudinal studies and post-mortem examinations of suspect brain tissue.  Articles, studies, and commissions will tease out the medical nuance and – perhaps – effective treatment and prevention measures will emerge.

What a shame, though, that – while this work goes on – our culture will continue to get its kicks from popular entertainment – nonsense like professional wrestling, for example —  that will depict the  good old fashioned “bop on the head” as part of a grand tradition of  performance rather than something potentially deadly and debilitating.

“They” should know better.

Photo Credit/melibeeglobal.com

I may be in the cheering section when I hear others urging the transparent and shameless public discussion of health issues.  The problem is that I don’t think I’ve ever been very good at it when it has been my health issue.

Which leads  – prepare for a jarring transition —  to my prostate.  I had a biopsy done last Monday.  I wanted to share some of what went through my mind as  I hopped on the table doing deep breathing exercises, preparing for a distinctly unpleasant procedure.

For close to two decades, I have been teaching an undergraduate class at Hunter  College that has examined the representation of disease and illness in media and culture. Much of the class has necessarily focused on HIV/AIDS and other health issues.  In recent years, I have taught a related graduate version of the course. You’ll have to trust that in the classroom I have been able to speak about  these topics  explicitly and without shame.

And actually done it pretty well. Read the rest of this entry »

Those of you who share my belief that the formation of ACT-UP  (The AIDS Coalition to Unleash Power) at the outset of the HIV/AIDS pandemic  was the start of one of the most extraordinary and effective social movements of our time  might want to check out these short oral histories just posted on Slate’s website.

There is, of course, an enormous amount of material on ACT-UP, much of which can be found in papers and other materials in the collection of the New York Public Library. But if the history and role of this truly heroic group is something with which you are not well acquainted, you might want to start here.

Some of you know that I am now in the 23rd year of teaching a course for undergraduates called Myths and Images: Social Problems in Media and Culture. In the course’s earliest years, many of ACT-UP’s founders and other early HIV/AIDS activists attended the class and spoke, including  Maria Maggenti,  Craig Davidson (GLAAD’s first executive director),   Bree Scott-Hartland, and Rodger MacFarlane.

A true hero of mine and one of the most extraordinary of the early ACT-UP organizers was Ann Northrup, and — while she never visited the class –  I have shown various videos of her early activism and amazing appearances on The Phil Donahue Show for years.  I just spoke to her last year about how, at a time when much about the virus was still uncertain and homophobia was rampant, she was a prominent voice of reason, truth, and wonderfully righteous anger.

Steve Gorelick, Senior Fellow,  is Professor in the Department of Film and Media Studies at Hunter College of the City University of New York

This is not about me clarifying anything. It’s about me getting confused. Maybe you can supply the insights.  I’ll supply the confusion.

Tonight I was watching a baseball game. The New York Yankees played The Tampa Bay Rays in a crucial late season game. The game was a disaster for the Yanks. But the real action was in the first inning, when what I have come to call a CHMP alarm went off.

Funny about these CHMP alerts.  They seem to go off more frequently in media settings that are not specifically health related.   Explicit and implicit messages about disease and illness are pervasive. Sometimes they come in the form of an intentional message and sometimes they are embodied in a person you confront on the street whose appearance catches your attention. All sorts of institutions and individuals completely outside the realm of health care are often in the position of providing health-related information. You just never know when the alarm will sound and you will be confronted with a CHMP-worthy insight. Read the rest of this entry »

While the study released today about chronic fatigue syndrome will not,  in and of itself, resolve the question of whether the syndrome can be linked to a recently discovered retrovirus,  these findings — published this morning on-line in the proceedings of the National Academy of Sciences — will be a an intriguing addition to last fall’s study in the journal Science asserting such a link.

This might be a good occasion to make a point about the sometimes lengthy and confused period when new, evidence-based research about a condition enters a cultural arena that had previously been occupied primarily by the deeply-felt lived experiences of those who have lived with the condition.

This confrontation between new research findings and lived-experience is often highly contentious. Sometimes a research finding is reported in the media in a way that seems to negate the very real pain that people have lived with. The subtext of media accounts might be reduced to:  “you may have thought something was the matter with you, but now we know there was nothing wrong.”

And sometimes the report of a research finding seems to fully confirm the reality of painful conditions that had previously been doubted and even ridiculed. “You know all that pain that you had been feeling? Well now we know that it was real.”  As if pain cannot be real until a refereed journal has said so.

My point is that this kind of oversimplified and reductionist coverage of complex scientific research is almost always unhelpful and confusing to an information-hungry public. Scientific consensus emerges over time, despite the popular misperception that one new study can turn the world on its head. Of course, there are times when one study can be revolutionary, but more often consensus emerges slowly.

And even when consensus seems close, that evidence-based consensus can and must have its reckoning with the day-to-day clinical findings and experiences of patients and healthcare professionals. Slowly and painfully, some rough version of truth or truths emerges.

The problem is that media and cultural institutions are almost exclusively focused on discrete incidents, and very seldom successful at covering extended periods in which truth unfolds in a complicated and nonlinear manner.

In fact, sometimes I think that media and science occupy distinctly different worlds: In media-culture world, truth is depicted as manifesting itself in specific, dramatic stories about specific people and specific incidents. In science-world, truth often emerges in a gallingly incremental way.  What is true can become untrue. Or what has been dismissed as psychosomatic can be revealed to have had a previously unknown organic cause.

Perhaps one solution would be for the popular culture to begin to jettison what I sometimes think of as the “Salk False Memory Syndrome.”  Don’t get me wrong. I have personal reasons to revere Jonas Salk.  I lived on a block with several kids for whom the vaccine came too late. I still can see my mother’s face as we stood in line to be immunized during the first year the vaccine was available.

But have you ever noticed how, as the years have passed, the complex and contentious process of discovering a polio vaccine has lost all of its nuance, complexity, missteps, and even political conflict? We look back, and – filled with memories of gratitude and relief — mistakenly imagine one lone, courageous scientist suddenly announcing to the world that polio had been cured.

Of course, this romantic narrative has been brilliantly debunked by a Pulitzer prize-winning historian and several accomplished filmmakers. The real story was drenched in conflict, dizzying u-turns,  and devastating dead ends.

But in an era of increasingly evidence-based medicine, there could hardly be a better time for those covering science and medicine to get comfortable with the distinctly uncomfortable fact that science can be messy, time-consuming, and frustratingly inconclusive.

Steve Gorelick, Senior Fellow CHMP, Professor in the Department of Film and Media Studies at Hunter College of the City University of New York.