Advocacy, MD, and Dealing with the US Healthcare System

I have limb-girdle muscular dystrophy type 2L (LGMD2L). My previous column, “I Live Creatively to Power Past Obstacles,” discussed how I live with my limitations. For me, the biggest challenge is navigating the world outside my home. But dealing with our disjointed healthcare system is also an issue.

A naive person might say that healthcare isn’t complicated: You get sick, you see your doctor, they prescribe interventions, you improve. Besides the complexity of finding the right interventions, however, you have to consider the complexity of the U.S. healthcare system.

According to a recent study at Johns Hopkins, about 250,000 deaths every year in the U.S. are due to medical error. Consider a system where medical decisions are often made far from the medical office — a system where providers who don’t know you and your situation often override your doctor’s decisions. Finally, add to that system the special needs in all the 60 or so different types of muscular dystrophy.

A couple of weeks ago, I had a bad fall. My right hand was holding the grab bar, but because my right arm is weaker than my left, it has no real bicep strength. When I fell back, I held on for dear life. But with my bicep so weak, my shoulder had to bear all of my weight. I immediately felt my shoulder ripping.

I made an appointment the next day with my internist. He did an exam and ordered an MRI, which was scheduled for that week, and an appointment with a specialist was set for the following week. The MRI would then be available for the specialist and some decisions could be made.

Simple, smooth, perfect. Or so I thought. The insurance company decided to deny the MRI, only they didn’t communicate it to the provider quickly enough. I only found out because I called to make sure everything was in place. In their opinion, from a physician who hadn’t assessed me, the MRI was not needed at that point.

There are two insurance companies to deal with: my actual insurance provider and a second company they contract with to make this level of care decisions. I tried to explain that besides the right shoulder injury, I have muscular dystrophy. I told them that time was of the essence because I need my arms to lift me out of chairs and couches and to assist me up the stairs. The response from the insurance company was a simple, “Sorry, the MRI is denied.”

They eventually told me it was because an X-ray should have been done first. I asked if they had informed my internist and told them the MRI could still be done as scheduled, but if I didn’t get approval soon, I’d lose a week or two. And to make things worse, when I tried to call them the previous day, the insurance company had an internal disaster going on and had no access to their networks. So, we lost a day there as well.

I immediately called my internist and let him know that he needed to call the insurance company. They were asking him to do a peer-to-peer conversation with a physician from the insurance company, but he was busy, so his response was, “Well, they denied it, so maybe the specialist will get it approved.” I had to demand they do the X-rays immediately since they have a machine right in the clinic. The best I could do was to substitute the X-ray — which ultimately showed nothing — for the MRI.

The bottom line is that as individuals with muscular dystrophy, it’ll be almost impossible to get medical professionals to understand that decisions may need customization to fit our specific needs. There also has to be more immediate and better communication between insurance companies and providers. Waiting days for a decision is not good, and providers need to be willing to pick up the phone and have that peer-to-peer conversation.

Providers should be advocates, but I fear that we will have to continue to be our own best advocate.

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Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.