A lot of time is spent in both Montgomery and Washington, D.C., on unimportant things. On Thursday’s Alabama House calendar there was House Bill 286 to designate the Queen Honey Bee as the official agricultural state insect of Alabama.
Occasionally, however, there comes legislation that will change a life and in this case possibly save a life. The Right to Try Act, Senate Bill 357 was sponsored by state Senators Cam Ward, Clay Scofield, Greg Reed, Priscilla Dunn, Jacob Thomas, “Jabo” Waggoner and Larry Stutts and House Bill 463 was sponsored by state Rep. April Weaver. It would “authorize a terminally ill patient to use a drug or device that has completed phase 1 of a clinical trial under certain conditions.”
On the website Hope for Gabe, Scott and Traci Griffin describe their family’s story this way, “With one phone call on June 6, 2008, our hopes, plans, and dreams changed forever. Our beautiful 3-year-old twin boy, Gabe Griffin, was diagnosed with a terminal disease called Duchenne. We did not realize it at the time, but this disease has no cure and is tremendously underfunded.”
When I heard Gabe’s story last year I was changed and determined to help where I could and now I’m asking for you to help as well. As a mother, I can’t imagine the enormous weight that Gabe’s parents or any parents of a child with a terminal illness feels. What’s worse is the idea that anyone can be told by their child’s healthcare provider that there is treatment available but that the government is in the way is more crushing.
We need to encourage our members to pass these important acts and thank the bill sponsors for their commitment to young Gabe and those like him.
You can learn more about Duchenne on the Hope For Gabe website.