Cincinnati Children’s Hospital has a new member of their neuromuscular team. It is Jeffrey Towbin, MD. Dr. Towbin has been interested in and treating Duchenne patients for over 20 years. His expertise is cardiology.

We had been planning to meet for several months, but could not get our schedules aligned. During his transition from Texas, he had been coming to Cincinnati at least one week/month and finally, it is official. He is now in charge of Pediatric Cardiology. This is one of those times that the stars lined up exactly right.

We spent a long time discussing Duchenne and heart failure issues. We talked about the fact that the boys are walking longer, living longer. Jeff was in charge of a major clinic in Texas and talked about many of the young men in their 30’s – graduating from college and having careers.

We discussed steroids, the impact they have had over the last 15 years, and the potential impact of promising therapies.

We also discussed another issue – one we will need to change. We discussed a young man (age 15) with Duchenne currently in need of a heart transplant. In the US, insurance does not cover a heart transplant for anyone with the diagnosis of Duchenne. Jeff and I discussed the “why” of this and the decision is based on the definition of Duchenne.

Insurance defines Duchenne with a certain measuring stick and it is based on walking – a young man who is not walking after the age of 11. This is absolutely unacceptable for a host of reasons. First and foremost, walking or not does not define a life and insurance companies have no right to make such judgment calls. In my head, I imagine people sitting at a desk viewing a certain set of criteria and hand down a decision. In this case, it is a wrong decision.

All of this has to be changed. Definitions have to change. Duchenne and Becker are a spectrum - the Dystrophinopathies. It is a spectrum from mild to severe and every individual diagnosed on this spectrum will develop dilated cardiomyopathy, and some may need a heart transplant. We must see to it that definitions change, attitudes change, and our sons receive the best care and treatment available – and it may well include a heart transplant.

This young man needs a heart transplant. His diagnosis is Duchenne and thus far, he is not on the transplant list. Thankfully, he is in good hands….

Welcome and thank you Dr. Towbin for joining the Cincinnati team!

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Comment by Dee on April 21, 2009 at 2:50am
That is what I hate about Insurance companies...they like to play God and decide who lives or dies. Well they are NOT God and depsite what the medical book says, it has been proven that with the proper care and treatment that DMD boys can live a lot longer & productive if capable. I'm with jacobs mommom-if you need letters writtten, petititions signed count on the MD Community and I'm sure many more!
Comment by Mary Sahagun on April 1, 2009 at 11:20pm
All I have to say is... YAHOO!!!!! and Amen!!! Totally agree and am so happy to hear Dr. Towbin is on board.
Comment by Jacobs Mommom on March 31, 2009 at 10:57am
I'm sure you will let us what we need to do and when. If letter writing is needed we are here.
Comment by cheryl cliff on March 30, 2009 at 12:59pm
Please let Paul and I know if we can be of assistance with this young man. For obvious reasons you couldn't mention where this family lives. Although we might be a little far away we would be happy to pitch in and do what we can. Any thoughts?
cheryl

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