We are all in this fight together!
If you have been following my blog, you may recall some posts about Pompe patients in New Zealand and Australia being denied enzyme replacement therapy (ERT). Our friends in the southern hemisphere are fighting with their own governments to approve funding for Myozyme – the life saving treatment for Pompe patients. And, if you follow my blog, you know – the stuff works! However, the bureaucrats are not convinced. We will continue to fight for our fellow Pompe warriors in New Zealand and Australia – I’m sure there will be calls for letter writing, so keep those typing fingers in tip top shape!
In the meantime, two of our friends are coming to America, to participate in a clinical trial of a new ERT drug from BioMarin. They will be in excellent hands because they will be Dr. Barry Byrne’s newest “lab rats” at the University of Florida. Allyson Lock from New Zealand and Brad Gibson from Australia will be touching down at Orlando International Airport as soon as all their travel documents are in order. The clinical trial is expected to last 6 months and they will undergo infusions every two weeks during that time. They are traveling half way around the world for a life saving treatment because their government won’t approve funding for it. Thank goodness for clinical trials and the welcoming arms of the University of Florida.
It is our hope, that once their governments see how effective this treatment is on their own citizens they will reconsider funding ERT. But for now, Allyson, Brad, and their families can rejoice in the fact that they will receive the life saving treatment – even if it means spending 6 months away from home.
I couldn’t be happier they are going to get treatment and am thrilled they will be “right up the road” at the University of Florida. Guess we’ll have to make Gator fans out of them! Go Gators!