SALT LAKE CITY - Legislation making a hybrid form of cannabis available for a group of Utah kids who suffer from a severe form of epilepsy has cleared a key hurdle, despite opposition from the medical community.
Members of a House committee late Friday voted to give a favorable recommendation to HB 105, sponsored by Rep. Gage Froerer. The bill would make a cannabis extract available to children who suffer from Dravet Syndrome. The measure now advances to the House for further consideration.
The favorable recommendation came despite warnings from several representatives of the medical community the legislation was skipping the scientific review process.
"I fully respect that double blind studies are the gold standard of scientific research and the medical community. I think there is another way to look at this. We've heard talk about safety. These kids are not currently safe already," Rep. Dana Layton, R-Orem, said.
Children suffering from Dravet's don't have a lot of time to wait, given their life expectancy, according to Jennifer May of Pleasant Grove. May said her 11-year-old son can suffer hundreds of seizures a day and has a life expectancy of 18 or younger, given current treatment options.
May and a group of mothers who have children who suffer from Dravet's say an extract known as "Charlotte's Web" has been especially effective in treating children with Dravet Syndrome. The extract is distributed by a Colorado Springs nonprofit group called Realm of Caring.
The extract contains extremely low levels of tetrahydrocannabinol (THC), advocates say, which means is has little of the psychoactive components associated with marijuana.
Federal guidelines stipulate any hemp derivative with a least 0.3 percent tetrahydrocannabinol (THC) is illegal under the Federal Controlled Substances Act.
Michelle McComber, a representative of the Utah Medical Association, said legislation should be scientifically based, not based on anecdotal evidence.
"This is not the right venue or the process. We simply don't have enough evidence. This is not good legislation," McComber said.
Rep. Edward Redd, R-Logan, a doctor, said the bill is asking a legislative body to do something the FDA can't do.
Rep. Paul Ray, R-Clinton, said the bill put him in a bind.
"I'm not qualified to make a decision on a drug like this. That's why we made the controlled substances board. As a legislator to say we're going to do this kind of medication and go over the heads of the FDA -- that's a bad position for the Legislature to be in," Ray said. He voted against moving the bill forward.
Froerer called it a privilege to work with mothers trying to get the extract available for their kids and reminded lawmakers most of the kids had a short life expectancy without some change.