Pennsylvania parents of children with epilepsy pin hopes on pot bill
By Melissa Daniels
Published: Sunday, Nov. 17, 2013, 10:40 p.m.
Hannah Pallas lies still on her quilt-covered bed when the seizure ends, arms and legs draped to her side. Nurse Brenda Cammisa folds up the girl's thin legs, administers oxygen, and cradles her with soothing words and hands.
Hannah, 10, doesn't speak, but she understands, gazing at those around her.
Her mom, Shaler native and Valencia resident Heather Shuker, sits at the edge of the bed with two pink binders, including one full of Hannah's medical records. The other is filled with articles and studies about what Shuker hopes will restore her daughter's quality of life: medical marijuana.
“Some children can get it and some people can't,” Shuker said. “It just doesn't make sense to me.”
Hannah's seizures, which began when she was 4 months old, have escalated in recent years to dozens a day, hundreds a week. Shuker said doctors are not sure what's causing her intractable epilepsy. No anti-seizure medications have stopped the seizures, and they bring their own side effects.
Shuker has new hope as a result of research on cannabidiol, or CBD, a non-psychoactive element in the marijuana plant that doctors in Colorado have shown to be effective against seizures. Medical marijuana is legal in that state.
In Pennsylvania, however, it is not. So Shuker will participate in a news conference on Monday in Harrisburg with PA Parents for MMJ, advocating for passage of a medical marijuana bill. She'll introduce Hannah to lawmakers.
Sens. Daylin Leach, D-Montgomery County, and Mike Folmer, R-Lebanon County, will introduce legislation to legalize medical marijuana with a high ratio of CBD.
Medical marijuana, overall, is “a bad joke,” because users without chronic illnesses can abuse the system, cautions Dr. Kevin Sabet, co-founder of Project SAM (Smart Approaches to Marijuana), who believes the federal government should research the medical properties of CBD and control its distribution.
“I think it's very difficult for states to set up an infrastructure and a control mechanism,” said Sabet, who worked in the White House Office of National Drug Control Policy during the past two administrations. Project SAM advocates for more research on medical uses of cannabis.
The marijuana Shuker wants for her daughter is not the greenish-brown leaves that recreational users roll and smoke. It's a thick oil made from CBD, which patients can place under the tongue or add to food. When made from the right strain of plant, the medicine does not contain enough of the psychoactive element, THC, to get a patient high.
“I'm fighting for this because I want her to have an opportunity to have a better quality of life,” said Shuker, a single mother who runs a billing business. Health insurance pays for Hannah's medical care.
Twenty states and the District of Columbia have laws allowing medical marijuana.
CBD oil nearly stopped seizures in Charlotte Figi, a 5-year-old in Colorado with Dravet's syndrome, a severe form of epilepsy. Her story was featured in a CNN documentary by Dr. Sanjay Gupta, and her mother, Paige, will speak in Harrisburg.
Dr. Alan Shackelford remembers how Charlotte had two seizures on the way to his office, two in the waiting room and two during her examination. When the state approved her application and she had a dose of CBD oil, her seizures went from dozens a day to one a week.
“This was totally new territory for us, and we were very cautious, watching what would happen,” he said. “The results were absolutely astounding.”
Seizure conditions can be deadly if brain or heart functions stop working, Shackelford said.
Figi's case and others may be evidential of CBD's promise, but widely published research or large-scale clinical trials about the effectiveness of CBD are few. Marijuana is a Schedule I drug, which means clinical trials require approval from three federal agencies, including the Drug Enforcement Administration, Shackelford said.
Though the Department of Justice has backed off from prosecuting marijuana crimes in states that legalized the drug, the DEA lists marijuana and cannabis as a hallucinogen alongside Ecstasy, LSD and steroids. A 30-page report from August begins with the subchapter, “Smoking marijuana is not medicine,” and delves into correlations between marijuana, mental health and crime.
The Food and Drug Administration recently gave approval to GW Pharmaceuticals to investigate treating epilepsy with CBD, along with a clinical trial at New York University. But the agency withholds approval on the plant itself for a number of reasons, including the potential for addiction, paucity of clinical trials and lack of consistency across marijuana plant compounds, according to the National Institute on Drug Abuse.
Leach is among Pennsylvania's most ardent supporter of medical marijuana and further decriminalization.
“This is not about some cultural war or some reefer madness or fear of the evil weed,” he said. “This is just medicine.”
Leach said he's encouraged by some bipartisan support for the CBD bill, though he has not discussed it with Senate leaders.
“We have a conservative legislature; we have a conservative governor,” he said.
Melissa Daniels is a staff writer for Trib Total Media. She can be reached at 412-380-8511 or firstname.lastname@example.org.
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