Saturday, February 6, 2016

An Open Letter to Chicago Med

 
February 6, 2016

Dear Chicago Med, 

I waited a bit to write this letter because honestly I needed time to wrap my mind around all that was (and was not) this past week’s Chicago Med episode. I have to be honest. I have never watched this show before, and only did so because I had heard that mitochondrial disease was going to be featured. Mitochondrial disease is an issue close to my heart and it was a big deal to all of us affected by it to have it on your show given the platform and audience.

Those of us from the “mito” world know that the need for greater education and awareness about mitochondrial disease is tremendous. We are used to taking our kids and loved ones to emergency rooms and having to take on the role of educator as we are met with blank stares at the mention of mitochondrial disease. We know what a difficult, long, and arduous process the road to diagnosis was for most individuals who have a mitochondrial disease. We also have shared experiences of doctors along the way who were stumped by the medical complexity that we brought with us and chose to dismiss or mislabel simply because that was easier than just admitting ignorance and/or seeking out other experts or resources.  We are aware that there are others out there who remain undiagnosed without proper treatments simply because not enough individuals in the medical community are armed with the knowledge about mitochondrial disease. We know that the journey with mitochondrial disease a difficult one – one that can lead to death, and we know what can come in the way of resources, funding, treatments, and potentially even a cure with more awareness and education.  

So you see, knowing that you at Chicago Med had actually taken the time to call one of the leading international experts in mitochondrial disease, and were planning to feature it in a storyline on your primetime show, I was so hopeful about the good that could come of it.
I want to be clear before I go on. I do not feel it is your show’s responsibility to raise awareness about mitochondrial disease. I do; however, feel that should characters on your show utter the words “mitochondrial disease’, it is imperative that your show represent it accurately. This should be the case for any medical condition. You are, after all, a medical show. You have a medical advisor. I would assume that you want to ensure that you bring integrity to your storylines and refrain from haphazard, reckless, and/or inaccurate portrayals of illnesses and hospital protocols.  Unfortunately, what I saw in this week’s episode was exactly the opposite of that. The list of inaccuracies and issues in your episode is extremely lengthy so I will refrain from listing them all. That said, there are some aspects of this week’s show that I must address on behalf of my family and all of those affected by a mitochondrial disease. 

First, your storyline led viewers to the belief that mitochondrial disease is a fictional condition. I know this because most viewers have probably never even heard of mitochondrial disease. I know I never had until my daughter was diagnosed after a long journey of ruling other conditions out and having countless tests to figure out what was wrong. You had one doctor who said she “knows mito”, but allowed for no real mention of what mitochondrial disease. In fact, when the dad started to say “Mitochondrial disease is…”, that is when your writers had him cut off as the doctor began talking. How hard would it have been for him to say what it actually was, or for her to elaborate on it at some point in the episode? You had no problem incorporating the following exchange into your show later when the two doctors were talking:

Dr. Manning: “She has a mitochondrial disease…”
Dr. Halstead: “Mito? We really are talking fiction here.”
Dr. Manning: “You don’t think it exists?”
Dr. Halstead: “Always seemed like a wastebasket diagnosis to me. Doctor can’t figure out what’s wrong, says it’s mito and calls it a day.”

And…you just left it there. No explanation from Dr. Manning. With this dialogue exchange, you basically told viewers that mitochondrial disease is a made up condition, invalidating and demeaning the lives of those who suffer daily with the challenges mitochondrial disease brings. You also insulted those doctors who dedicate their lives to the mitochondrial disease patients and all of the medical complexities and unknowns that come with them. You spit in the face of all those who fight tirelessly on behalf of their family members who suffer, and advocate for more research and funding. “Wastebasket diagnosis” will now and forever be burned into my memory as it is such an offensive term and extremely off base and inaccurate when describing mitochondrial disease. It negates all of the struggles we went through as a family to obtain a diagnosis, and insults the medical professionals that were instrumental along the way. Worst of all, this term is disrespectful to my daughter who struggles daily and has a confirmed diagnosis.

Where is the balance, Chicago Med? I know Munchausen’s by Proxy and Medical Child Abuse exist. I am not na├»ve. But so does mitochondrial disease – about 1 in 4000 have it. Your portrayal made Munchausen’s by Proxy and Medical Child Abuse look like one in the same.  They are not. We in the mitochondrial disease community have a hard enough time without your show linking us with abuse. 

The following dialogue exchange took place in this episode when Dr. Halstead was trying to figure out what did not seem right about the situation and approached Dr. Charles. 

Dr. Halstead: “I wish there was a simple answer to that.”
Dr. Charles: “What about the not so simple one?”

The irony of this statement is that neither a mitochondrial disease diagnosis nor a Medical Child Abuse allegation is “simple” as you made it seem. Both are extremely complex and varied, and require thorough investigation and evaluation, far more than what was shown in your episode.
If you want to tell a story about Medical Child Abuse, you could have done it without tying it to mitochondrial disease, or at least ensured that your represented the disease accurately and well on your program. So many of us parents of children with mitochondrial disease have had to take on the role as educator and advocate, and literally fight to make sure our children’s needs get met because of the lack of knowledge and awareness. Many have to travel to see qualified physicians.

You also led viewers to believe that this dad had acted all on his own, and was obsessive and pushy about the daughter’s condition. Dr. Halstead made it seem crazy that Michelle’s dad would have her medical records with him, and that his response to not having had a muscle biopsy was a sign of guilt.  Yet the reality is anesthesia can be problematic for many with mitochondrial diseases, and muscle biopsies are costly. They also are no longer the sole means of diagnosing mitochondrial disease. Genetic testing has been expanded and is the standard.

You acted like the dad had driven everything, yet here lays this girl with a central line and gastrostomy tube in her body. These medical measures can only be undertaken after specific tests and diagnoses are made by actual physicians. They are not the work of a father. There was no mention at all in the episode of these doctors seeking out prior physicians to obtain more information on the patient and her ailments. The dad, instead, had just diagnosed her via Google. Do you know how ridiculous that is? Sure, every parent searching for what is wrong with their child who is struggling, is likely to do online research, but his “google diagnosis” alone cannot be the basis for all of her medications (such as the anti-seizure medicine) and her g-tube/central line implants. Parents can yell as loud all they want, but a good doctor is going to make sure all diagnostic processes and treatment protocols are in place for these measures.

When the dad says that he shares that the “good news” was that they had a diagnosis, but the “bad news” was there is no cure, I am quite sure all those affected by mitochondrial disease watching nodded in agreement. It is truth. No one wants something to be wrong with themselves or their family member, but when there is, they definitely are thankful to finally have answers. Unlike many other diseases, there is not a cure for mitochondrial disease so those affected do the best they can with what they have available to them. The truth is the “bad news” extends far beyond their being no cure. The “bad news” is that there is not enough knowledge and awareness out there. The “bad news” is that each individual comes with their out set of medical complexities and treatment only does so much. The “bad news” is for many life is a daily struggle, and for others their life comes to an end due to mitochondrial disease. 

And, the “bad news” is your show had 7.5 million viewers watched last Tuesday, making things even more challenging for those in the mitochondrial disease community. You marginalized and negated mitochondrial disease in the eyes of others, and made those who suffer from it feel even more at risk and insecure about their interactions with the medical community. 

Whether you realize it or not, whether you like it or not, whether you care or not, you have a platform with your show. You have a responsibility. Last Tuesday night, your responsibility WAS NOT to raise awareness about mitochondrial disease, but it IS now. Steps need to be taken to correct your inaccurate portrayal of mitochondrial disease. Many, including myself, would love for you to extend the storyline and have it proven that “Michelle” does in fact have mitochondrial disease and her father is not guilty of medical child abuse.  In that storyline, we would like to see actual information shared about what mitochondrial disease is, and any inaccuracies that were included in this past week’s episode corrected.  I realize this is probably not going to happen. At a minimum, we would like educational statements about the reality of mitochondrial disease included at the beginning or end of an upcoming show, and always attached to any further airings of the “Reunion” episode”.  We would also like statements to be included on your website and posted to Twitter and Facebook.

You can make this right. You need to make this right. I do not know what the future holds for my daughter, but I do know I could not let this go. On behalf of all those affected by mitochondrial disease, I implore you to look into how you can turn this into something good and beneficial to our mito community. Use your powers for good, Chicago Med. In making this right, you can also be helping countless others who have yet to be diagnosed and are suffering daily.

I would welcome the opportunity to engage in a discussion with those involved with your show, either by phone, face-to-face or email. If not me, please meet with others from our mitochondrial disease community to discuss how we can partner to best resolve this matter. I can be reached via email at ndion18@comcast.net.

I look forward to seeing your response to this situation. In the interim, please refer to and share the following links to learn more about mitochondrial disease: 


Sincerely,

Nicole Dion

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