August 17, 2009
“Profitability Gap” Means Adult Treatment for Children
Patti, a member of the Children’s Cardiomyopathy Foundation email listserv I am a member of, posted the WSJ article, “Little Hearts, Big Problems,” that speaks to the reason why, despite congenital heart defects being the number one birth defect in America, there are few treatments designed specifically for children. The “profitability gap” was something that our social worker at LPCH spoke to us about the Berlin Heart (manufactured in Germany and only available in the US under a “compassionate” clause from the FDA). I posted on here a little while back about a new alternative to the Berlin Heart that just received NIH funding for research, but these are few and far between. We also experienced the problems with medications discussed in the WSJ article. When M first went home, she was on a liquid form of Enalipril that the hospital pharmacy had provided to us on discharge. When we ran out a couple of weeks later, there was not one pharmacy in our home town that would/could provide it in liquid form. So, we had to go to our apothecary (yes, there still are apothecaries around) in order to have it made!
I am becoming more and more aware of the importance of raising the profile of pediatric heart problems. This article just goes to prove that more needs to be done.