Posted on July 20, 2014 at 4:24 PM
The year 2013, brought a number of film releases with main characters who had significantly degenerate moral fiber. You know them, good acting, sex, drugs, brutality prominent but few redeeming qualities. Dallas Buyers Club (DBC) is not one of those films. Its lead character is definitely a degenerate, but develops moral fiber. If “The Star” of a film is the person who undergoes the most change, Ron Woodroof (Matthew McConaughey) may be the star of the millennium. His character moves from self-serving reprobate to enlightened self-interest. In the process, he believably expands compassion for others. The compassion fall-out includes Jared Leto, (Rayon) who well plays a stereotype of a transgender woman whose script, in contrast to Woodroof’s, traverses only the narrow ground between dying and dying more.
Dr. Eve Saks (Jennifer Gardner) spoke particularly to me. She had that deer in the headlights feel to her — as she decided to which side of the road she would jump — with her patients, or with her retrograde moving profession. Her subtle portrayal of an overwhelmed newbie was reminiscent of my internship at Cook County Hospital, Chicago in 1985. I saw 17 hospitalized patients with AIDS, within my first 35 days. Fortunately, I had good role modeling by Drs. Ron Sable, Renslow Sherer and Dr. Jonathan Mann.
Among those 17 patients was an 8 year old girl with Leukemia, AIDS and tuberculosis – the later was diagnosed on autopsy, which brings me to the bioethical point. Four years before that autopsy, I was told in medical school that miliary or disseminated tuberculosis no longer existed — that was then, this was now. Diseases change and so should the manner of treating and studying them and their cures. In medicine it’s not “location, location,” but “observation, observation.”
DBC is about how AIDS, science, research and Federal Drug Administration regulations were forced to change. The change was pushed by the autonomy of people who ran the most risk of dying from AIDS and their allies. The principle of justice requires equipoise or the equitable distribution of burdens and benefits. The job of clinicians is to understand and communicate the burdens and benefits so that individuals, who can, are able to exercise their autonomy. When there is no proven cure, those with life threatening illnesses and intact decisional capacity, now, can choose through the informed consent process, to run the risks of clinical research protocols, whose outcomes are as yet unproven. Access to such trials is currently a health disparity. Navigating the clauses in the three proceeding sentences is the job of bioethics in new diseases, therapies and research. This is how we learned that oral anti-virals could reduce HIV/AIDS vertical transmission from mother to child.
Data safety monitors (DSM), augment institutional review boards and were given teeth during the rise of the AIDS epidemic. DSM allowed tracking of acceptable burdens associated with research, on vulnerable persons while the studies are in progress. DSM also can stop studies where the burdens outweigh the benefits, or the benefit is so clear that lifesaving therapies should not be with-held to complete the research. This acceptability should be consistent with the 2013 World Medical Association amended Declaration of Helsinki on Medical research. Significantly this amendment references identifiable human material or data. This would recognize the privacy of genomic material correcting ethical violations associated with HeLa cells and other genetic technologies. Consider, non-small-cell lung cancer, the most ubiquitous cancer in the world. In that case, we look at the value of Palliative Care, genomic-bio-marker driven therapy and clinical trials, all three at once. The criteria for treatment look like a menu at an over stocked diner, but bioethics helps to navigate them. Such protocols would not be possible without changes in policy and procedure reflected by the struggles of those affected by HIV/AIDS and the bioethical analysis accompanying them.
Set in 1985, the story is sandwiched between the year before AZT was found effective (the first of the anti-viral drugs used in HIV/AIDS) and the year after, Robert Gallo and Luc Montagnier both discovered HIV-1 as the agent causing AIDS. The footprints of the Dallas Buyers Club are everywhere.