Al's Saga continues...

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

s as possible.  ANYONE, especially those LIVING IN GEORGIA.  Please write 2 letters addressed to Senator Johnny Isakson and Senator Saxby Chambliss.  People living outside of Georgia should address and send letters directly to their Senators.  People living in Georgia should send the letters to me via email or mail, and also to the senators via email so that if I get a meeting with them I can go in with an armful of letters.  Their address are:

Senator Johnny Isakson
One Overton Park
Suite 970
3625 Cumberland Boulevard
Atlanta, GA 30339
isakson.senate.gov/contact.cfm

Senator Saxby Chambliss
100 Galleria Parkway
Suite 1340
Atlanta, GA 30339
chambliss.senate.gov/public/index.cfm
Points to make in the letter:

* The FDA has denied the request for Alfred Real to recieve the best most effective and reliable method to heal his burns.  The previous 143 requests for this procedure have not been denied.  This request is not substaintially different from all previously approved requests.  Alfred Real qualifies for the procedure and his Doctors believe it is the best option for his survival and recovery.

*According to the Doctors, this procedure is like driving a Mercedes and the next best procedure is like driving a Yugo.

*They also said that this procedue has an 80% success rate and the next best procedure has a 60% success rate. 

*The other option for Alfred is a procedure that takes more time, which leaves Alfred at more risk.  The longer he is exposed without skin the more risk of infection.

*In addition, although the FDA may have some problems with the way the clinical research program is handled administratively the FDA should not keep Alfred from having the best possible chance of recovery.  Sanction the program, but don't sanction Alfred. 

*Look back at the journal entry from 6/22/10 to get a clear explanation of what has happened in the program.

Again, Please send them to me via email at therealjourney@hotmail.com OR you can mail them to me at 734 Briar Park Ct., NE. Atlanta, GA 30306.  You may give this information to whomever you want who is willing to write a letter. Please send as many letters as you can by MONDAY, JUNE 28th.

Thanks!

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.

Unless otherwise noted, all content of this blog is the property of Lane Bailey, ©2009 Lane Bailey. 

I'd love to hear from you...