A measure allowing terminally ill people to use experimental drugs without needing full federal approval has passed the Florida House, after several lawmakers shared their personal stories.
Rep. Ray Pilon (R-Sarasota), the bill’s House sponsor, says his measure gives those with no hope access to experimental drugs that might help.
“This bill is the ‘Right to Try,’ which indicates that people that have been diagnosed to be terminal within 12 months will be allowed use experimental drugs that are in at least the first phase of FDA testing,” said Pilon.
According to the bill’s staff analysis, experimental drugs are defined as new drugs not approved by the FDA and are in the process of undergoing testing for safety and effectiveness. They must go through a lengthy and expensive approval process requiring clinical trials that could take as long as a little over a decade—time that Pilon says many terminally ill patients don’t have.
So, Pilon’s “Right To Try Act” aims to make it easier on them.
“It allows the manufacturer to directly provide this drug to people who have no other hope and will die without this availability,” added Pilon. “This bill is something that we could do here in Florida. I think we’ll be about 12th state if it does pass. In addition to that, it’s my feeling that I’d rather have those people here taking drugs that are at least in testing formula, rather than going to Europe or Mexico by being duped by buying snake oil.”
Rep. Debbie Mayfield (R-Vero Beach) shared the story of her family’s journey years ago.
“Time has been said a lot,” said Mayfield. “And, I will tell you time is so important to cancer patients. My husband was diagnosed with cancer, and we had to do a clinical trial because he was told he had 90 days to live at the most when he was diagnosed in April 2007. We did have to go out of state to have treatment out to MD Anderson [Cancer Center].”
And, she says her husband’s doctor tried to give him that time through an experimental drug. And, for awhile, it worked.
“The tumors were shrinking in both his esophagus and his liver,” added Mayfield. “But, FDA had not approved he drug because it was a clinical trial. He gave us time. He gave us 18 months, but if he had been able to continue the drug, he would have given us more time.”
And, Mayfield says she hopes this bill will become law to help other families avoid having to go through this, because she remembers feeling powerless.
“There is nothing harder than to come home from a hospital and have to tell your children that ‘your dad is going to die now because we don’t have the drugs needed to keep him alive,’” continued Mayfield. “And, I will never forget my 12-year-old telling me, ‘Mom, why can’t you guys go back out to MD Anderson and have treatment?’ And, we had to tell him, ‘because the law would not allow it.’ And, he said, ‘change the law! That’s what you guys do.’ And, it broke my heart and Stan’s heart for us to have to tell him that ‘this is bigger than what we could do.’”
Rep. Dennis Baxley (R-Ocala) too praised the measure. He says he has two kids that have a 50 percent chance of being diagnosed with Huntington’s disease.
“Huntington’s disease is a very disabling kind of illness and it can be early onset,” said Baxley. “My daughter has been diagnosed in December that she has the genetic pattern. We don’t know what the next 20 or 30 years looks like.”
But, Baxley says even with the long road ahead for her, he believes the measure will help improve his daughter’s chance for survival.
“There are drugs in trial in California that within five years will be on the market. Under your bill, she could live long enough to truly benefit from those…to truly interrupt deterioration from a debilitating disease,” added Baxley.
And, bill sponsor, Pilon, also shared a personal story of his own.
“My son at the age of 36 was diagnosed with Caulerpa cancer,” said Pilon. “He’s a survivor. The drugs worked for him, but he’s still in danger for many, many years. So, this is personal to me.”
Some lawmakers wanted medical marijuana to be included in the bill, and there may be a separate effort to do that next year.
And, the measure passed the House unanimously Thursday. Meanwhile, its Senate companion has one more stop to go before it heads to the floor. Its last committee hearing is slated for Monday in the Senate Fiscal Policy committee.
For more news updates, follow Sascha Cordner on Twitter: @SaschaCordner.