Sunday, June 11, 2006

Narrative, Advocacy and AIDS at 25

It has been almost a month since any of us blogged on this site, which has nothing to do with the amount we have to say, and everything to do with completing the academic year and squeezing intense activity into the early part of June. For many of us involved in the Health Advocacy Program, these weeks have been opportunities to focus on the role of narrative in health & medical care, in advocacy and in teaching. We participated in the Narrative Matters conference at Arcadia University in Wolfville, Nova Scotia (just right for escaping the NYC metro area in late spring) where I chaired a panel on “Listening to the patient’s voice: An interdisciplinary approach integrating oral history, illness narratives and advocacy” that included Sayantani DasGupta, a pediatrician and Health Advocacy faculty member, and Pat Stanley, an alum. (Sayantani also delivered a second paper—an amazing combination of analysis, performance and media, “Cameras, scalpels and speculums: Popular film and the tragicomedy of pelvic exams.”) See Conference Program for other interesting papers.) Sayantani and Pat have also been faculty in the new Narrative Medicine Workshops at Columbia. This week the Writing the Medical Experience workshop begins at Sarah Lawrence. For the second year at the College, David Watts, physician and poet, is coordinating this intensive writing experience where professionals, patients, health consumers and caregivers teach, write, support, critique and listen to each other. (Evening readings by faculty are open to the public if you are in the area.)

I was reminded of the power of narrative and the role of narrative in advocacy last week when I read Abraham Verghese’s beautifully written op ed piece in the New York Times on “AIDS at 25” (New York Times, June 4, 2006, not yet online as of this writing). Verghese was a young medical resident 25 years ago when AIDS struck New York. "[T]he milestones of my life and medical career -- and of thousands of other doctors like me -- have since been inextricably tied to the history of the virus,” he writes. He went on to write My Own Country about caring for—and about—people with AIDS in east Tennessee during the next decade. Today he teaches medical students not yet born in 1981 “how the metaphorical veil of shame and secrecy that traveled with this virus tainted everything; how being an AIDS doctor could distance you from other doctors, and even from friends.” Verghese’ tribute to these early sufferers from AIDS, and to those who cared for them, is a tribute all of us in the advocacy community share:
My patients taught me about courage, about bravery, about organizing for a cause, about dying for one. . . .

We became zealots for the cause of our patients, even if zeal was all we had to give. We had no cure to offer, and so we began to leave the thresholds of our medical-industrial complexes and visit our patients in their homes, at their deathbeds. Paradoxically we discovered that our presence, our promise not to desert our patients, our continued care brought about a sort of healing, by which I mean helping the patients come to terms with their illness, with their deaths, and meanwhile diminishing for them the sense of spiritual violation that any serious disease brings, none more than this one.

. . . I watched with awe as politics eclipsed science and as gay activists rattled the cages of stodgy government entities like the Food and Drug Administration, and got results.

. . . Today I see so many of us who came of age at the same time now have one foot in Africa or Asia, as if we need the kind of challenge we once faced here. It is as if we have carried the lessons of the AIDS protest group Act Up abroad, to prove that one can make a difference even in a poor country, one can find ways to pay for and distribute drugs, one can make an impact on transmission from mother to child.

. . . On my desk I keep a picture sent to me by a friend, Rick Hodes, a doctor who has spent his professional years in Ethiopia. It shows a beautiful, chubby-cheeked Ethiopian child, wearing colorful local dress, and holding in his hand a photograph of a scrawny skeleton in rags. The photograph is of his former self, taken a few months before he got the H.I.V. medications that Rick scrounged money to buy. Victories are now to be won in that fashion, one child at a time.

. . . I think perhaps that is the legacy of my patients, the legacy of the nurses and physicians' assistants and social workers who taught me so much, the legacy of people from all walks of life who toiled against AIDS when there was no hope. My students seem to know what we had to so painfully learn: the secret in the care of the patient is caring for the patient.


Anonymous Anonymous said...

Like many blogs, comments are rare. I have read about the advocacy program at Sarah Lawrence and see notices of victory in the AIDs struggle, even though Quality of Life for AIDs victims is often marginal.

My problem is my group doesn't have time to take on 40+ credits for an advocacy degree and we are already deeply into 600 hours of fieldwork (smile).

I represent a similar as well as different situation than the AIDs dilemma. Our health problems are related.

I have worked recently with the FDA and have found OSHI sliding into a "tour guide" position rather than a conduit for two way communication. They openly state OOPD will not be influenced by patients even though my group sent over 100 letters requesting action on existing OOPD designation applications. Action has remained slow and lethargic. We are also counting the deaths of those who are not aware of the treatment that saves lives during the time the applications were submitted... There was another one today. The majority of doctors are still using medications shown to be harmful.

My contact at the FDA feels safe about current OSHI positioning with Cancer and AIDs patients. But we are seen as a problem. We are bringing a cure to the platform and our resolving Chronic Th1 conditions have implications for both Cancer and AIDs patients as well.

With all the hoopla about Molecular Genomics, we have found that there is no incentive to include those data as primary in evidence. They are "optional." Yet the data is accurate, replicable and defines the problem and the cure.

There is much to be done.

Is there someone in your study program looking for an opportunity to capture 12 credit hours with our group? Th1 and Chronic disease sensitivity appreciated.

We are no longer satisfied with endless palliative offerings that subject us to ever more side effects (even deaths induced by problematic medications). We are getting well, and are working to help others achieve this goal too.

Please reply here. I will watch for your answer.--JRFoutin

2:14 PM  

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