Pubdate: Mon, 28 Apr 2014 Source: Sun-Sentinel (Fort Lauderdale, FL) Copyright: 2014 Sun-Sentinel Company Contact: http://drugsense.org/url/mVLAxQfA Website: http://www.sun-sentinel.com/ Details: http://www.mapinc.org/media/159 Author: Rhonda Swan Page: 11A IF SCOTT HAS COMPASSION, HERE'S CHANCE TO SHOW IT Rick Scott needs a lesson on compassion. Seeking a second term as Florida's governor, Scott has portrayed himself a champion of the people, using the gimmicky slogans, "Florida Families First" and "It's Your Money." He wants us to believe, despite evidence to the contrary, that he cares about the working class, those less fortunate. That would be a lot easier to buy if Scott weren't insisting that children suffering from severe epilepsy participate in clinical trials before they can access a strain of marijuana proven to alleviate their lifethreatening seizures. "Charlotte's Web" is high in cannabidiol but low in tetrahydrocannabinol, or THC, the ingredient that gets marijuana users high. Parents whose children have taken the drug, which isn't approved by the Food and Drug Administration, say it dramatically reduces seizures. The Senate is expected to vote today on a bill that would decriminalize Charlotte's Web and allow doctors to prescribe the drug but it doesn't require that patients participate in clinical trials as Scott wants. "We want to make sure those suffering get access to treatments in the fastest possible way," Scott said in an email to the News Service of Florida. "And that is why we have proposed language to ensure the safety of our children." Scott wants to create an "Office of Compassionate Use" in the Department of Health that would "enhance access to investigational new drugs for Florida patients through approved clinical treatment plans or studies." So forcing sick children to wade through government red tape is his definition of compassion? The FDA has approved only one multicenter clinical trial on the effects of purified cannabinoid on intractable epilepsy, which hasn't responded to other treatments. Trials are taking place at the University of California San Francisco and at New York University. Both involve the drug Epidiolex, which comes in a liquid form containing no THC. The trial is limited to 150 children. Four other institutions will be added this year, but there's no guarantee Florida residents will be able to participate. "In children, uncontrolled seizures may impact brain and neurocognitive development," said Dr. Maria Roberta Cilio, the principal investigator for the UCSF study, "which can have an extraordinary effect on quality of life . . ." In other words, controlling these seizures is urgent. Making children wait for a clinical trial is not as Scott puts it the "fastest way possible." Compassion is defined as "a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering." If Scott had a desire to alleviate the suffering of these children, he wouldn't insist they be put on a waiting list. "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 spokesman for Holley and Peyton Moseley, a Panhandle couple whose daughter RayAnn has intractable epilepsy. "These children are living day to day, one seizure away from death. They can't afford to wait for FDA trials." Perhaps Scott, who opposes medical marijuana, which Floridians will get a chance to approve in November's election, is afraid that signing the Senate version of the cannabis bill will make it look like he's flip-flopped on the issue. And at least people would actually get help, unlike last year when he stopped opposing Medicaid expansion but has done nothing to prod lawmakers to provide coverage to the uninsured who would be eligible. "I cannot, in good conscience," Scott said, "deny the uninsured access to care." He conscious doesn't seem to be bothering him. If it were, he could not deny ill children access to Charlotte's Web. How Scott handles this will demonstrate whether he understands the real meaning of compassion. Rhonda Swan is a former editorial writer for The Palm Beach Post and author of "Dancing to the Rhythm of My Soul: A Sister's Guide for Transforming Madness into Gladness." - --- MAP posted-by: Matt