Skip to Content

In The News

Bipartisan Legislation Would Help People Suffering from Epilepsy and Other Seizure Disorders

Washington, D.C., August 21, 2014

         Mark and Deb Knecht go to bed every night praying their daughter, Anna, will wake up the next day. Mark Knecht then insists on being the one to wake Anna up the next morning. He doesn’t want his wife to find her daughter dead. This is the harsh reality that the Knecht’s and countless other American families face every day.

        Anna, an 11-year-old from Mechanicsburg, Pennsylvania, has Dravet syndrome, a form of epilepsy that causes frequent seizures. More than two million individuals in the United States suffer from a form of epilepsy; over 300,000 of them are under the age of 15.  Epilepsy is a brain disorder that results in violent seizures due to a disruption in electrical communication between neurons.  For people suffering with epilepsy, violent seizures may occur more than 100 times a day.  Since any seizure could prove fatal, families are forced to provide around-the-clock care for their loved ones.  I’ve seen firsthand the struggles of several families who face various forms of this debilitating disorder. Their heartbreaking situations compelled me to act.

        Currently, there’s no cure for epilepsy.  Families spend thousands of dollars on prescription medications that may have dangerous side effects or don’t significantly mitigate its effects; however, one supplement has shown promise in reducing the amount and duration of seizures in children.  The only reason why this natural, low-cost supplement isn’t already being used to treat children and individuals nationwide is due to its classification by the Controlled Substances Act.  “Cannabidiol” - or CBD - can be extracted from the plant Cannabis sativa L, and currently is classified by the federal government as a Schedule 1 Narcotic, along with heroin and cocaine.  This natural supplement is our key to helping children with epilepsy live lasting and fulfilling lives. 

        Families who don’t have access to CBD are faced with impossible choices. Several of my constituents, including the Knecht’s, may soon be forced to take their children to Colorado for treatment, tearing their families apart at their time of greatest need. Mark bluntly analogizes the situation this way: “your child is in a pool, your child is drowning and you have a life preserver in your hand, but it's against the law to throw your child the life preserver."

        This situation is unacceptable. I recently introduced legislation in Congress, the “Charlotte’s Web Medical Hemp Act of 2014”, to ensure that children and individuals with epilepsy and other debilitating seizure disorders have access to the life-changing CBD oil and therapeutic hemp.

        This common-sense solution is possible because the Stanley Brothers, a group of farmers from Colorado, produced a plant now known as “Charlotte’s Web” - named after the first child it helped, Charlotte Figi, a child with severe Myoclonic Epilepsy who was suffering from nearly 300 grand mal seizures a week.  Disheartened by the lack of productivity from prescription medication, Charlotte’s family reluctantly decided to try the Stanley Brothers’ plant, which had a high CBD concentration and an extremely low THC (hallucinogenic) concentration.  The Figis extracted the oil from the plant and served it to Charlotte with her food.  Immediate results were seen not only in Charlotte’s personality, but her seizures were reduced to only four per month.

        Another constituent of mine, Lili Gilmore, 13, of Hanover, Pennsylvania, was diagnosed with Lennox-Gastaut syndrome, a severe form of epilepsy, when she was 3 years old. After unsuccessfully trying dozens of medications and special diets, Lili’s family enrolled her in a clinical trial for Charlotte’s Web at New York University. Lili’s seizures have since decreased and she’s even experienced several seizure-free days.

        My legislation does not legalize marijuana; I remain opposed to the legalization of its recreational use. Rather, the bill simply allows families to gain access to CBD oil.  In order to extract the oil, we needed to legalize industrial hemp, which is used in clothing, paper and for various construction purposes.  My legislation specifies that the plant can contain no more than .3% THC, so even if it were to be smoked as traditional marijuana, the psychoactive effects would be mitigated. 

        Although the approach on medical marijuana I’ve taken isn’t as far-reaching as the one championed by your editorial board, I hope you’ll see this as a pragmatic first step to addressing an untenable problem.  As a parent of two daughters, the thought of being left helpless in the eyes of their suffering is unimaginable.  The greatest country in the world must continue to strive for medical advancement for all Americans.  These children and individuals like them deserve a chance to live healthy and fulfilling lives and our government shouldn’t stand in their way.

Back to top