What A Patient Advocate And Medical Ethicist Wants NBC To Know

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To The NBC Television Network,

As a patient advocate and medical ethicist that works with patients in the Mitochondrial Diseases community, I am writing to express my extreme concern and dismay regarding the “Chicago Med” episode that aired last night of February 2, 2016, on your network.

This episode covered a patient who presented with a diagnosis of “mitochondrial disease”, a category of rare and difficult to diagnose metabolic disorders, which was then determined by the lead physician on the show to actually be a case of “Munchhausen’s Syndrome by Proxy”, also known as “Medical Child Abuse (MCA)” which is an extremely rare, and controversial, form of child abuse. The producers of “Chicago Med” behaved very irresponsibly in the way they scripted this episode:

 First, they referred to mitochondrial disease as a “wastebasket diagnosis”, and implied that it is not a true and legitimate medical condition. In fact, mitochondrial diseases have been recognized as real medical conditions since the 1960s, and they are an important area of research involving hundreds of prominent research institutions around this country, including the National Institute of Health.

Second, mitochondrial diseases are a category of hundreds of very serious metabolic disorders, which according to the United Mitochondrial Disease Foundation[1], together result in more pediatric deaths in the US than all childhood cancer deaths, combined. In other words, these are devastating illnesses that claim the lives of children and adults every day. They are not trivial, and are not an appropriate target of medical “shaming” by actors on a television drama.

Third, the producers of “Chicago Med” conflated the diagnosis of a category of very serious, and sometimes fatal, metabolic diseases, with a diagnosis of a vanishingly rare and controversial form of child abuse, and very clearly implied to their viewers that children with mitochondrial diagnoses are appropriate targets for child abuse investigations.

This is extremely inappropriate and detrimental to the thousands of families caring for children with mitochondrial diseases in the U.S. As has been recognized over the last three years, medical professionals unfamiliar with mitochondrial problems have frequently targeted patients with mitochondrial diseases for investigations of medical child abuse. The tragic case of Justina Pelletier out of Boston Children’s Hospital in 2013-2014[2], provided national coverage of one such case. The New York Times editorial by Professor Maxine Eichner, in July 2015[3], documented that hundreds of similar false child abuse allegations against “mito” families have been reported to rare disease groups across the US. As a patient advocate, I also have personally witnessed this terrible phenomenon, and in the last five years have advocated for over 60 families of children with mitochondrial disorders who experienced false accusations of medical child abuse.

If “Chicago Med” wanted to explore the diagnoses of Medical Child Abuse or Munchausen’s Syndrome by Proxy, there was no need to link this type of child abuse to mitochondrial diseases. There was absolutely no need to include this patient population in a show on child abuse, and there was no excuse for further harming a community of rare disease patients that has already been devastated by medical, and public ignorance.

What Chicago Med producers accomplished on February 2nd’s episode was to irresponsibly contribute to the ignorance and suspicion wrongly surrounding mitochondrial disease patients, and to further the suffering and harm generated by the false child abuse accusations that many of these families have experienced. I am ethically and professionally disappointed by how this thoughtless behavior by “Chicago Med” inflicted harm on a group of vulnerable children and adults, and by how NBC contributed to this harm by airing the February 2nd episode. Please be accountable for the harm your network has caused, and issue an apology to the thousands of children and adults who suffer with mitochondrial diseases in the United States.

Sincerely,

Jessica Shriver, M.A.

Patient and Family Advocate, and Medical Ethicist

Jessica.e.shriver@gmail.com 

Worcester, MA

[1] “United Mitochondrial Disease Foundation: Mito 101” United Mitochondrial Disease Foundation. (http://www.umdf.org/atf/cf/%7B858ACD34-ECC3-472A-8794-39B92E103561%7D/Metabolic%20Precautions%20and%20ER%20Letter.pdf)

[2] Swidey, Neil. And Wen, Patricia. “Justina Pelletier heads home after judge ends state custody: Ruling caps 16-month battle over diagnoses and parental rights of Conn. Teen” Boston Globe June 17, 2014 (http://www.bostonglobe.com/metro/2014/06/17/judge-orders-custody-justina-pelletier-returned-parents/mDWtuGURNawSuObO0pDX4J/story.html)

[3] Eichner, Maxine. “The New Child Abuse Panic” Sunday Review: Opinion. July 11, 2015. New York Times.