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July 20, 2014

DALLAS BUYERS CLUB meets SCIENTIFIC INTEGRITY


DALLAS BUYERS CLUB  is a biopic about an unlikely hero, directed by Québécois Jean-Marc Valle and written by Craig Borten and Melisa Wallack. In case you get a call from your local AIDS-Walk coordinator, remember 50,000 cases of AIDS (Acquired Immune Deficiency Syndrome) still occur in the USA annually. Transmission is largely preventable with education, testing and early intervention. Ethnic peoples of color are disproportionately affected in new cases. Thirty-five years ago, I never imagined AIDS would be the defining disease of my career and then some.  After my AIDS-Walk call, I pulled out my notes on Dallas Buyers Club, which screened October, 2013 at the Mill Valley Film Festival. It has won three Oscars and too many to count other awards.

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 AID.  The footprints of the Dallas Buyers Club are everywhere.

references:

Dallas Buyers Club (35mm) directed by Jean-Marc-Vallee (2013) Focus Features (USA) 116 min

Some other films about the HIV/AIDS epidemic:

How to Survive A Plague (35mm) David France (2012) Sundance theatrical/IFC (USA) 109min

Philadelphia(35mm) directed by Jonathan Demme (1993) Tri Star (USA) 125 min

Yesterday (35mm) directed by Darrell Roodt(2004)HBO USA ( South Africa) 96 min ( Zulu, English  subtitled)

The Declaration of Helsinki http://www.wma.net/en/30publications/10policies/b3/  accessed July 16, 2014 2013

HIV/AIDS statistics USA http://www.cdc.gov/hiv/statistics/basics/ataglance.html accessed July 16, 2014.

World Association of Bronchoscopy and Interventional Pulmonology Academy : Small Sample Tissue Acquisition and Processing for Diagnosis and Biomarker-driven Therapy of NSCLC. Bioethical issues video commentary. http://www.wabipacademy.com/site/webcast/clinicalstem1/step40
July 19, 2014

Do Oregon and North Dakota Healthcare Surrogates Perform Better?

In most states an individual can appoint a healthcare agent not only without the consent of the agent but also without even discussing the appointment with the agent.  In fact, many healthcare surrogates fulfill the role of substitute decision mak...
July 18, 2014

Is complicity important in Hobby Lobby decision?

ontinued litigation will not unite the country but compromise can. Forcing individuals and their companies to act against deeply held religious belief should not be done and will only inflame partisan rancor.
July 18, 2014

Safeguarding Children in Emergencies through Ethical Pediatric Research

Tomorrow, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) will present its recommendations on pediatric medical countermeasure (MCM) research at the 10th Annual Pediatric Bioethics Conference in Seattle. The conference, hosted by the Treuman Katz Center for Pediatric Bioethics at the Seattle Children’s Hospital, takes place July 18 and 19, 2014; its […]
July 18, 2014

Pope Cited by NRLC before Senate Judiciary Committee

Many of my (pro-liberty) positions on end-of-life medical treatment issues do not endear me to the National Right to Life Committee.   But I do aim to produce careful and circumspect scholarship.  Consequently, I was pleased to see the presi...
July 17, 2014

Great but “unaffordable” new drugs

I’ve posted several times on the challenges posed by new drugs that work, but cost the moon.  It’s one thing when an expensive drug is only marginally effective.  It’s another when the drug looks really good, like Kalydeco for cystic fibrosis or Sovaldi for hepatitis C.  I’ve suggested here and here that both drugs are worth high prices, although pushback from payers on the price... // Read More »
July 17, 2014

Nature Isn’t What It Used To Be

Gregory E. Kaebnick
July 17, 2014

She Ain’t Heavy, She’s My Brother

by Sean Philpott-Jones, Director of the Center for Bioethics and Clinical Leadership Actress Laverne Cox made history last week when she was nominated for an Emmy for Outstanding Guest Actress for her role on the hit show “Orange is the New Black.” Ms. Cox is the first openly transgender actress to receive an Emmy nomination. While […]
July 17, 2014

Only a Third Who Express a Preference to Die at Home, Actually Die at Home

There is a well-known discrepancy between people's preferences to die at home and their likelihood to actually die at home.  This has already been measured several times.  Now, there is additional confirmation. Last week, the UK Office of Na...
July 17, 2014

Rationing Is Not a Four-Letter Word

Philip M. Rosoff is a practicing physician and Professor of Pediatrics and Medicine at Duke University Medical Center, where he is also a member scholar of the Trent Center for Bioethics, Humanities, and History of Medicine, and Director of Clinical Ethics at Duke University Hospital.

He has just published Rationing Is Not a Four-Letter Word with MIT Press.  I like this book's thesis and explored it (a little) in some posts like "Top 10 North American Death Panels."

Here is the abstract:

Most people would agree that the healthcare system in the United States is a mess. Healthcare accounts for a larger percentage of gross domestic product in the United States than in any other industrialized nation, but health outcomes do not reflect this enormous investment. In this book, Philip Rosoff offers a provocative proposal for providing quality healthcare to all Americans and controlling the out-of-control costs that threaten the economy. He argues that rationing—often associated in the public’s mind with such negatives as unplugging ventilators, death panels, and socialized medicine—is not a dirty word. A comprehensive, centralized, and fair system of rationing is the best way to distribute the benefits of modern medicine equitably while achieving significant cost savings.
Rosoff points out that certain forms of rationing already exist when resources are scarce and demand high: the organ transplant system, for example, and the distribution of drugs during a shortage. He argues that if we incorporate certain key features from these systems, healthcare rationing would be fair—and acceptable politically. Rosoff considers such topics as fairness, decisions about which benefits should be subject to rationing, and whether to compensate those who are denied scarce resources. Finally, he offers a detailed discussion of what an effective and equitable healthcare rationing system would look like.

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Published Articles (16)

American Journal of Bioethics: Volume 14 Issue 7 - Jul 2014

The Principle of Equivalence Reconsidered: Assessing the Relevance of the Principle of Equivalence in Prison Medicine Fabrice Jotterand & Tenzin Wangmo

American Journal of Bioethics: Volume 14 Issue 6 - Jun 2014

Patient and Citizen Participation in Health: The Need for Improved Ethical Support Laura Williamson

American Journal of Bioethics: Volume 14 Issue 2 - Feb 2014

Ethical Review of Health Systems Research in Low- and Middle-Income Countries: A Conceptual Exploration Adnan A. Hyder, Abbas Rattani, Carleigh Krubiner, Abdulgafoor M. Bachani & Nhan T. Tran

American Journal of Bioethics: Volume 14 Issue 2 - Feb 2014

Connecting Health Systems Research Ethics to a Broader Health Equity Agenda Bridget Pratt

American Journal of Bioethics: Volume 13 Issue 9 - Sep 2013

An Ethical Analysis of Mandatory Influenza Vaccination of Health Care Personnel: Implementing Fairly and Balancing Benefits and Burdens Armand H. Matheny Antommaria

American Journal of Bioethics: Volume 13 Issue 9 - Sep 2013

Vaccine Mandates Are Justifiable Because We Are All in This Together John D. Lantos and Mary Anne Jackson

American Journal of Bioethics: Volume 13 Issue 8 - Aug 2013

Treating Patients as Persons: A Capabilities Approach to Support Delivery of Person-Centered Care Vikki A. Entwistle & Ian S. Watt

American Journal of Bioethics: Volume 13 Issue 8 - Aug 2013

Justice Between Age Groups: An Objection to the Prudential Lifespan Approach Nancy S. Jecker

American Journal of Bioethics: Volume 13 Issue 8 - Aug 2013

Global Aging and the Allocation of Health Care Across the Life Span Norman Daniels

AJOB Primary Research: Volume 4 Issue 2 - Apr 2013

Using the Best Interests Standard to Generate Actual Duties Loretta M. Kopelman

News (1967)

June 18, 2014 2:52 pm

Stroke 'selfie' helps save Canadian woman's life

“The sensation is happening again,” Stacey Yepes tells the camera. “It’s all tingling on left side.”

June 16, 2014 4:37 pm

U.S. health care system ranks last among 11 industrialized nations

Even though it’s the most expensive, the United States’ health care system ranks last among 11 industrialized nations in a new study that examines factors such as quality, efficiency and access to care

May 5, 2014 6:44 pm

Deaths fell after Massachusetts healthcare overhaul: study

When Massachusetts blazed the trail of healthcare reform in 2006 by expanding coverage for the poor and requiring all residents to have health insurance, it may have done more than serve as a model for nationwide reform: it also seemed to save lives, according to a study released on Monday.

May 1, 2014 1:03 pm

Panel Says No to Medicare Coverage for Lung Cancer Screening

After a day’s deliberation, an advisory panel voted last night against recommending national Medicare coverage for annual screening for lung cancer with low-dose computed tomography (CT) in high-risk individuals.

April 25, 2014 1:53 pm

Higher Education Associated With Better Recovery From Traumatic Brain Injury

Better-educated people appear to be significantly more likely to recover from a moderate to severe traumatic brain injury (TBI), suggesting that a brain’s “cognitive reserve” may play a role in helping people get back to their previous lives, new Johns Hopkins research shows.

April 23, 2014 1:46 pm

Would you share your DNA info to advance medicine?

The provocative question of how “big data” will affect medicine and patient privacy is getting a lot of attention at the National Institutes of Health.

April 22, 2014 12:51 pm

Cloning advance using stem cells from human adult reopens ethical questions

Scientists have grown stem cells from adults using cloning techniques for the first time — bringing them closer to developing patient-specific lines of cells that can be used to treat a whole host of ailments, from heart disease to blindness.

March 25, 2014 2:53 pm

Marijuana pills and sprays ease MS symptoms

There is no cure for the condition, and therapies have proven difficult, as many have serious side effects. But now, relief may come in the form of a medical marijuana pill.

March 5, 2014 3:04 pm

Planned Parenthood, Tucson gynecologist, fighting tighter regulations on abortion drugs

Planned Parenthood and a Tucson gynecologist are asking a federal judge to block new rules that will sharply restrict ability to perform abortions using drugs instead of surgery.

March 3, 2014 4:08 pm

Women Still Left Out of Medical Research: Report

Two decades after the passage of a landmark law mandating that women be represented in government-funded medical research, a new report reveals that the world of science is still ignoring women’s unique health issues far more than it should.

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