If you haven't already, please feel free to read Ade For Al. A simple Lemonade Stand at the local Farmer's Market in Lilburn, GA raised over $2500 for Al Real's family in just one evening. It makes me VERY proud to be part of this community.
As if the actual injuries little Al suffered weren't enough, now the family is having to fight for his treatment.
To catch you up, Al Real is an 8 year old boy here in the Lilburn area. He and another little friend were playing a few weeks ago. While they were playing, they apparently decided to stage a toy plane crash. They put some gasoline on a toy plane and lit it on fire. Al suffered 3rd degree burns over 80% of his body. He was rushed to Grady Hospital in Atlanta, which has one of the best trauma centers in the country. After a day, he was airlifted to the Shriner's Hospital in Cincinnati, OH... they have one of the best pediatric burn units in the world.
The treatment that the doctors want to use involves growing replacement skin for Al. This is more than just skin grafts, it is new skin. In effect, the hospital can grow Al's own skin in a lab, and then apply it to him. The FDA classifies it as an experimental treatment, even though it has been around for a over a decade.
But it isn't an insurance company denying coverage for the treatment. It is the FDA. They 'award' clearance for the treatment on a case by case basis. In Al's case, they denied treatment... because they didn't feel the paperwork was in order.
In order to get the treatment that the doctors recommend will require intervention by elected officials. This is from the journal being kept on Al's behalf by his family.
Wednesday, June 23, 2010 10:33 PM, EDT
HERE IS HOW YOU CAN HELP! I am going to work on contacting our senators about the FDAs denial of the procedure to grow Al's own skin. I would like to have as many letters from their constituent
It is shameful that it has come to this. This is a clear cut example of the government stepping between a boy and the treatment his doctors... the best doctors in the world... feel is appropriate.
The good news is that since this was posted, the family has been contacted by both Senators from GA, as well as one of our Congressman and the Governor's Office. They are pressuring the FDA to reconsider their decision. Unlike insurance companies, the government gets to decide if they can be subject to a lawsuit.
We have to keep pressure on the government to do the right thing.
*Just to disclose, Al's mother was one of my older son's Pre-K teachers. I consider her a friend.