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!