A proposal that would decriminalize a form of marijuana that could dramatically reduce seizures in children with a rare form of epilepsy is on its way to the Senate floor but lacks the elements Gov. Rick Scott says he wants.
The proposal (SB 1030), approved Tuesday by the Senate Appropriations Committee, mirrors a House plan sent to the floor the day before in many ways but is missing a critical feature pushed by Scott, who wants to restrict use of the drug to people involved in clinical trials.
Parents of children with severe epilepsy that does not respond to other treatments have pinned their hopes on a strain of marijuana, called "Charlotte's Web," which is high in cannabidiol (CBD) and low in euphoria-inducing tetrahydrocannabinol (THC). Parents whose children have taken the drug, not approved by the Food and Drug Administration, say it dramatically reduces life-threatening seizures.
The issue has become one of the hottest topics of the 2014 session. Many at-first reluctant GOP lawmakers have rallied around the substance after hearing emotionally charged testimony from parents whose children suffer hundreds of seizures per month. But other Republicans are concerned that the proposals en route to the chamber floors could wrongly give the public the idea that the lawmakers support a constitutional amendment on the November ballot that would allow doctors to order "traditional" marijuana for severely ill patients.
The plan (HB 843) approved by the House Judiciary Committee on Monday includes language proposed by Scott that would create an "Office of Compassionate Use" within the Department of Health that would "enhance access to investigational new drugs for Florida patients through approved clinical treatment plans or studies." Studies on "investigational new drugs" are the first step in the FDA approval process.
"As a father and a grandfather, I cannot imagine what it would be like to have a family member suffering. We want to make sure those suffering get access to treatments in the fastest possible way. And that is why we have proposed language to ensure the safety of our children and have been working with the Legislature to see it included in the final bill," Scott said in an e-mail Tuesday.
Scott, who was mum on the issue of Charlotte's Web until recently, sent Surgeon General John Armstrong to the House committee on Monday to voice his objections and to outline his conditions.
With just 10 days before the legislative session is scheduled to end, Scott is airing his position and his staff is working behind-the-scenes to avoid what could be an awkward, election-year veto.
"I don't think, in a situation like this where there's young children that could potentially benefit from it, that he wants to be quiet and not be out saying anything about it and then get it and veto it and just look cold," said lobbyist Jon Costello, a former legislative affairs director for Scott. "I think he wants people to know where he stands and fix it to try and get it to a position where he potentially could support it."
Sen. Rob Bradley, R-Fleming Island, said he is working with the governor's office as well as Senate President Don Gaetz, whose son, Rep. Matt Gaetz, is spearheading the issue.
"We're really hopeful that the governor will see past any politics and really do his research and search his heart and see that these parents need relief now," said Ryan Wiggins, a public relations consultant handling media for Holley and Peyton Moseley, a Panhandle couple whose daughter RayAnn has "intractable" epilepsy that does not respond to other treatments.
"These children are living day to day, one seizure away from death. They can't afford to wait for FDA trials," Wiggins said.
The Moseleys have led the charge on the issue. They've handed out purple bracelets stamped with "Support HB 843/SB 1030 #StandWithRayAnn," hired lobbyists in addition to the PR firm and set up a non-profit association focused on the "Charlotte's Web" issue.
Drugs in the Food and Drug Administration pipeline do not have the THC content that makes Charlotte's Web effective, Moseley said. And, she said, her daughter takes several FDA-approved medications whose potential side effects include death.
"It just is frustrating for me when they have boxed warnings that make them potentially life-threatening but that's OK?" she said.