In a move that could trump state legislative actions in Pennsylvania and across the nation, U.S. Rep. Scott Perry is on Monday introducing a bill to nationally legalize a marijuana-based oil that has been shown to reduce seizures in children with debilitating epilepsy.
The conservative York County Republican made the announcement Monday morning at a press conference where he was joined by the president of the national Epilepsy Foundation and advocates that included the mother of Colorado girl Charlotte Figi, whose successful treatment with cannabidiol oil has inspired a national movement.
Joel Stanley, one of the creators of the “Charlotte’s Web” strain of marijuana used to treat Figi, was also present for the introduction announcement of Perry’s bill, the “Charlotte’s Web Medical Hemp Act of 2014.”
The bill would give children and adults with epilepsy and other seizure disorders access to the oil (called CBD) for treatment by removing CBD oil and therapeutic hemp from the federal definition of marijuana in the Controlled Substances Act, Perry said.
The marijuana plant and its derivatives and extracts are currently banned for medical and recreational use at the federal level and in most states, including Pennsylvania.
The bill doesn’t legalize all forms of marijuana, such as smoking, for medical use, Perry said.
‘Therapeutic hemp’ is that which has no more than .3 percent tetrahydrocannabinol, or THC, the psychoactive chemical which causes the ‘high’ from marijuana.
The plants used in the oil are grown to be high in CBD, which is credited for the reduction in seizures, but low in THC.
Perry said earlier this year he had been swayed to legalize the oil treatments after several meetings with district parents whose children have uncontrolled seizures for which traditional pharmaceuticals were either ineffective or caused life-threatening side effects.
Many of those parents became unlikely lobbyists for marijuana after seeing Charlotte Figi’s story on a special report from CNN.
Among them are Matt and Angela Sharrer of Tyrone Township, Adams County, who attended Monday’s press conference with their 10-year-old daughter, Annie Sharrer.
Despite their families’ generations-long roots in the midstate, the couple said they had considered moving to Colorado so they could have legal CBD treatments for Annie, who suffers between five and 30 seizures per day and one more severe seizure about once per week, Angela Sharrer said Friday.
Only one of the numerous medications they tried actually managed the seizures, but the side effects were so severe she was hospitalized with an inflamed pancreas when she was only 8 years old, Sharrer said.
The cognitive gains that were made during the time of reduced seizures were mostly lost when Annie had to be taken off the medication and they returned, Sharrer said.
“I could see how (having fewer seizures) made her just a brighter and happier kid overall…she was learning and retaining information better,” Sharrer said. “It’s the little things, like going to the refrigerator and being able to sign for a drink. There was some communication, then the seizures returned. And that’s very hard to see, because Annie has to work hard for everything she’s able to do.”
The story of Charlotte, who went from having 300 grand mal seizures a week to having only two or three per week, brought hope for a treatment that could actually give Annie’s brain a break long enough for her learn and retain new skills and be a happier child, Angela Sharrer said.
Like numerous other families, the Sharrers began pushing legislators, attending forums, and showing up at the state Capitol for rallies.
Sharrer, speaking Friday before details of Perry’s bill were announced, showed guarded optimism about the prospect of federal legalization.
She said parents who’ve fought for legalization have seen gains and setbacks, setting them on an emotional rollercoaster not unlike the one caused by the seizures.
A pilot program Gov. Tom Corbett promised as parents were preparing to stage a sit-in in his office hasn’t progressed, she said.
And legislation is slow, she said, citing the crawl of Pennsylvania Senate Bill 1182, a state legalization bill she and her husband support.
Perry’s bill will be assigned to a committee, where a passing vote will be required before it can be forwarded for consideration by the entire House.
The Congressman reiterated his opposition to recreational marijuana, saying the bill is intended to address a specific need.
“…these children and individuals like them deserve a chance to lead a healthy and productive life and our government shouldn’t stand in the way,” he said.