The Daily Item, Sunbury, PA

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April 12, 2014

Colorado’s medical marijuana attracts families with epileptic kids

Fairfax County, Va. — For the parents of children with intractable epilepsy, the stream of constant seizures, emergency room visits and powerful medications can become a demoralizing blur. Beth Collins of Fairfax County, Va. said her teenage daughter suffered as many as 300 epileptic seizures per day.

“There were days when I just laid in bed with her and prayed,” Collins said, “and watched her because I wasn’t sure what would happen.”

Now, the seizures have all but stopped. Each day, Collins gives her daughter Jennifer a dose of medical marijuana oil from a syringe, as any parent might administer liquid medicine to a child.

But Collins can’t offer the cannabis extract from her Fairfax kitchen, where she raised Jennifer for 14 years. Instead, she does so in a small two-bedroom apartment in Colorado Springs. Collins is one of a pair of Northern Virginia mothers and daughters who, after trying various combinations of drugs and treatments for their children, have packed up and moved recently to Colorado to try medical marijuana oil to battle the children’s debilitating seizures. Because Virginia law does not allow for the sale of medical marijuana or its extracts, the families have elected to move 2,000 miles so their children can have a chance at a normal life.

“I feel a lot better,” Jennifer said of the treatment, which is scientifically untested. “I can focus more, I’m doing better on tests in school. My memory’s improved a lot.” Her seizures are “not completely gone,” but her mother said that “we’ve had days where I’ve seen very few, maybe one or two. That’s a major decrease.”

Former South Riding, Va. resident Dara Lightle has watched her 9-year-old daughter move from not only seizures, but also “unbelievable anger, kicking and screaming at me” to reading for the first time and discarding all other drugs. “We’re grateful to be here” in Colorado, Lightle said, though she considers herself and daughter “medical refugees.”

The Northern Virginia’s families’ efforts are part of a growing national migration toward the seemingly life-changing marijuana oil. More than 100 families have moved to Colorado Springs in recent months to obtain the oil, and mothers have launched lobbying efforts in many states to legalize medical marijuana for conditions such as epilepsy.

Many of them have connected with Realm of Caring, a group started by a family who developed the “Charlotte’s Web” low-THC plant and the oil, which is rich in cannabidiol, or CBD, according to Heather Barnes-Jackson, the group’s executive director. The plant is named for Charlotte Figi, who began taking the CBD oil (also called “Realm Oil”) at 5 as a last resort and saw a drastic reduction in her violent grand mal seizures. Research has showed that CBD has anti-inflammatory, neuro-protectant and antioxidant properties through its interactions with the brain and the body, Barnes-Jackson said.

Meanwhile, other Virginia families watch with envy, unable to uproot their families but hopeful that the Old Dominion will consider a change in its marijuana laws, at least for this oil — which has marijuana’s intoxicating ingredient, THC, removed — and this condition. Virginia has long been reluctant to consider legalizing medical marijuana, and previous pushes for legalization in the General Assembly have quickly died.

But now supporters have a new, important ally: recently elected Lt. Gov. Ralph Northam, a pediatric neurologist who has treated children with epilepsy for years. He said in an interview that he is going to help craft legislation next year that would allow certain Virginia residents to use medical marijuana for epilepsy, though he acknowledges that scientific research has not caught up with the glowing anecdotal research emerging from Colorado, where medical marijuana has been legal since 2000.

Northam said that a British company, GW Pharmaceuticals, has been approved for a study in the United States using a cannabis extract for patients with Dravet syndrome, a particularly severe form of epilepsy.

“The bottom line is to do something, through the studies or legislatively, to help these families,” the lieutenant governor said. “If we go before the legislature and have these families come in and testify, I really think we could get that passed and get help for these families. I’m going to do a bit more research and we’ll put the language together” for next year’s legislative session.

The Virginia General Assembly may be a tough sell. State Del. Robert Marshall, R-Prince William, who has pushed a bill repealing Virginia’s already restrictive 1979 law permitting possession of marijuana for medical purposes, said those who support cannabis for epilepsy should go through the established scientific testing process required for other drugs.

“They are taking homemade remedies and asking the legislature to bypass those” testing procedures, he said. “It may curtail seizures in the short term in kids, but to do these experiments on kids, in the absence of science, I question that. Go to the FDA and go through the regular process.”

Parents who have endured years of epilepsy’s consequences — particularly those who have children with Dravet syndrome, which can be fatal at any time — feel that they don’t have time to wait for the FDA’s process. A lack of assistance from the federal government has complicated matters for these families. The Food and Drug Administration, which must approve any legal use of medical marijuana, says it “requires carefully conducted studies in large numbers of patients (hundreds to thousands) to accurately assess the benefits and risks of a potential medication.”

It recently gave approval to GW Pharmaceuticals for testing of the CBD-based drug Epidiolex for both Dravet and Lennox-Gastraut syndromes, two severe forms of epilepsy, and the company hopes to work with doctors and patients to perform clinical trials in the United States this year.

Officials with the FDA, the Drug Enforcement Administration, the National Institute on Drug Abuse, and the Office of National Drug Control Policy all declined to discuss the government’s position on CBD oil or relaxing restrictions on marijuana for research purposes.

But even in the epilepsy community there is a debate about whether using the extract is appropriate. In February, the Epilepsy Foundation released a position paper calling for an end to DEA restrictions on clinical trials and research and asking the agency to allow greater access to medical marijuana oil for the 1 million Americans who have uncontrolled epileptic seizures.

“People with uncontrolled seizures live with the continual risk of serious injuries and loss of life,” Epilepsy Foundation leaders Philip Gattone and Warren Lammert wrote. “If an epilepsy patient and their doctor feel that marijuana is the best treatment option then they need to have safe, legal access to medical marijuana and they need that access now.”

A week after the Epilepsy Foundation released the statement, the American Epilepsy Society issued a contrasting view cautioning that “we must remember that these are only anecdotal reports, and robust scientific evidence for the use of marijuana is lacking . . . use of marijuana for epilepsy may not be advisable due to this lack of information on safety and efficacy.”

 

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