Peter Hasty said if he couldn’t use marijuana to control severe muscular tics caused by Tourette’s syndrome, he would be confined to his home in Ellsworth.
“I would not be able to go out the door,” Hasty said. “It (marijuana) has vastly improved my quality of life.”
Although medical marijuana is legal in Maine, Tourette’s syndrome is not one of the conditions permitted for treatment, so for now Hasty has to obtain marijuana illegally if he wants to use it to control the disease.
The Maine Department of Health and Human Services this week denied a request by Dr. Dustin Sulak to add Tourette’s syndrome to the list of qualifying medical conditions that marijuana use is allowed to treat.
Sulak, who prescribes medical marijuana out of his Falmouth practice, said a denial letter signed by Mary Mayhew, health and human services commissioner, arrived on Christmas Eve without any explanation for the decision.
A panel including four doctors gave a recommendation to Mayhew, after a hearing that Sulak and Hasty testified at in November.
Sulak said no one from the opposing side testified.
DHHS offices were closed on Tuesday, and Mayhew could not be reached for comment.
If Tourette’s syndrome had been added to the list of qualifying conditions, patients would have been able to legally obtain marijuana through a dispensary or a licensed caregiver.
Sulak said that a number of studies point to the effectiveness of marijuana in controlling Tourette’s syndrome, and that traditional medication is often ineffective in treating Tourette’s syndrome.
“Tourette’s syndrome does have human studies showing that (marijuana) helps, and it’s not like there’s other good options,” Sulak said.
Two doctors with the Yale School of Medicine wrote on the New York Times web site that there is some indication marijuana could help those who have Tourette’s syndrome, but research is far from definitive.
“The most comprehensive review to date of the efficacy of cannabinoids in Tourette’s comes from a research group in Britain, the Cochrane Collaboration, that reviewed all the available data.
They found that “the improvements in tic frequency and severity were small and were only detected by some of the outcome measures.”
The group concluded that there is not enough evidence to support the use of cannabinoids in treating tics and obsessive-compulsive behavior in people with Tourette’s syndrome,” wrote Dr. Robert King and Dr. James Leckman for the New York Times.
But Hasty, 28, said marijuana is the only medicine that works for him, and he uses it one to three times per day. Hasty said sometimes he smokes it, but he also uses vaporizers and tinctures.
“It is not a miracle drug, but it allows me to function with no side effects,” Hasty said.
Sulak said his request to the state was the first attempt he knows about to add a qualifying condition through the administrative process rather than legislation.
The state Legislature this year added post-traumatic stress disorder and other conditions to the list of permitted conditions, which include chronic pain and Crohn’s disease.
He said he’s not sure if he’s going to challenge the decision.
Paul McCarrier, a lobbyist with the Medical Marijuana Caregivers of Maine, said the legislative process has been more effective in adding approved medical conditions and relaxing some of the medical marijuana rules, while DHHS is more resistant to change through rule making. McCarrier said if DHHS doesn’t allow it by 2015, the Medical Marijuana Caregivers of Maine will lobby the Legislature to add Tourette’s syndrome to the approved list.
Maine is one of about 20 states with medical marijuana laws allowing use of the drug for certain conditions.
Marijuana legalization advocates hope Maine will vote in the coming years to legalize marijuana for recreational use by adults, something Portland residents voted for in a November referendum.
Portland’s vote had little practical effect as marijuana for recreational use is still illegal according to state law.
Joe Lawlor can be contacted at 791-6376 or at: