How NBC’s “Chicago Med” Turned Mitochondrial Disease Into Bad Medicine

It shouldn’t matter how a TV drama portrays an illness — but it does.

By Jody Allard

Last night’s episode of “Chicago Med” could have been a great step forward for the mitochondrial disease community. By featuring a mito patient in a storyline, the show could have brought the complicated and often-overlooked disease to a national stage.

Image: NBC.com

This type of coverage is particularly important for rare diseases like mito; limited visibility of rare diseases frequently leads to reduced research and funding. Even though mitochondrial disease may not be as rare as it was once considered, it still doesn’t have a single FDA-approved treatment or cure. Being featured on a national TV show could have done great things for this little-known disease, and the mitochondrial disease community was eager to see their experience come to life on national television.

In Tuesday’s episode of “Chicago Med,” a teenage girl went to the hospital with a complicated medical history that included a mitochondrial disease diagnosis. The doctors quickly turned against the girl’s father, accusing him of self-diagnosing her symptoms via Google and engaging in medical child abuse. The doctors eventually concluded that the father had tried to help the girl but that all of her symptoms were the result of a psychiatric disorder. Mitochondrial disease, they said dismissively, is a “wastebasket” diagnosis.

Mitochondrial disease, they said dismissively, is a “wastebasket” diagnosis.

I’ve never watched “Chicago Med” before. I’m not their target demographic and the show’s writers probably don’t care how I feel about their handling of mitochondrial disease. But it’s important for the mito community to denounce the idea of our disease as manufactured or fake because those misconceptions lead to increased allegations of medical child abuse and delays in diagnosis.

I’ve written before about the toll of false allegations of medical child abuse in the mitochondrial disease community. The most famous of these cases made national headlines two years ago when 15-year-old Justina Pelletier was taken from her parents for more than a year after they were accused of “overmedicalizing” her. The Pelletier case shook the mito community to its core, and the similarities between it and the episode of “Chicago Med” aren’t a coincidence. Portraying a Pelletier-inspired story line with the victims as perpetrators is not just offensive to patients and families, it adds more fuel to the fire of a link between medical child abuse and mitochondrial disease that simply doesn’t exist.

The problem with mitochondrial disease isn’t that it’s too easy to diagnose. In many cases, it requires obscure lab tests, muscle or organ biopsies, or genetic testing to confirm the diagnosis and these tests are expensive, often not covered by insurance, and pose real health risks to mito patients. While “Chicago Med” portrayed the muscle biopsy as the gold standard for mito diagnosis, many doctors no longer consider anything other than genetic testing to be diagnostic. Since anesthesia is particularly dangerous to mito patients, many opt to forgo a muscle biopsy due to the risk of severe crisis or even death — not to mention the upwards of $25,000 price tag.

Before I was diagnosed with mitochondrial disease, I had seen 13 neurologists and probably about as many other specialists. I was in and out of the hospital frequently, and I crashed after a routine outpatient procedure (caused by, you guessed it, an anesthesia reaction). My diagnosis brought me answers after a lifetime of symptoms and experiences that never made sense, but it also gave me the freedom from other medical treatments that simply weren’t working.

Even though there’s no magic pill or cure for mito, an accurate diagnosis led me to supportive treatments and therapies that have improved my quality of life, plus given me access to mitochondrial disease-specific anesthesia protocols that make it safer for me to undergo medical procedures. With a critically low number of mito specialists and little to no insurance coverage of genetic testing, the barriers to diagnosis are already large — the last thing patients need is for mitochondrial disease to be conflated with a psychiatric condition. The mitochondria in my cells don’t function normally; there’s nothing psychiatric about it.

Mito isn’t a glamorous disease; there’s no flashy campaign or month of “greenwashing” to save us, and few resources to help patients cope with the emotional and financial toll of life with a progressive, incurable disease. Mitochondrial disease patients are accustomed to living in the shadows where we struggle to afford testing and treatments, travel across the country to find a doctor who can treat us, and watch our friends decline and eventually die. I consider myself lucky because I “just” became disabled in my 30s. It could be worse. For many people I love, it is already worse.

The mitochondrial disease community needs doctors, researchers, and even the public at large to believe us when we tell them we are sick and to approach our children with compassion, not suspicion. Anything less is bad medicine — and bad TV.

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