My 10-year-old daughter has big blue eyes and is a serious fan of the Chicago Blackhawks. She loves music, fairy tales, and driving under city streetlights at night. She also cannot walk, talk or feed herself, thanks to the uncontrolled seizures that have resisted all attempts at treatment since she was three months old. Every day, she is at risk of SUDEP, or Sudden Unexpected Death in Epilepsy.
Just in the last year, something truly promising has appeared on the horizon for her and other children with severe and debilitating seizure disorders: a unique strain of marijuana that has been found to dramatically reduce life-threatening symptoms that often include hundreds of violent seizures a day. But because of irrationally rigid state and federal laws, it is currently only available in Colorado, where it is grown.
This needs to change.
At issue is a strain of marijuana that is very high in a substance called cannabidiol (CBD). For reasons not yet fully understood, it helps control seizure disorders that have resisted every mainstream treatment. Even better, because it is low in the compound tetrahydrocannabinol, or THC, it cannot get you high – there is a reason it was first dubbed ” Hippie’s Disappointment“. So let’s be clear: children taking this drug, which is administered orally, do not get stoned. What they do get is relief from relentless suffering that often consigns children to profound disability or early death.
Given the stakes, it is unconscionable that high-CBD marijuana continues to be federally classified as a Schedule I drug, meaning that it has “no currently accepted medical use and a high potential for abuse”, and the mere act of transporting it from Colorado to another state – even one where it has been legalized – is illegal. This puts interested research scientists, sympathetic doctors, and desperate parents in violation of federal drug trafficking laws.
The result is not only heartbreaking, but irrational. Regulating high-CBD marijuana the same way we treat the pot that gets you stoned is like treating Welch’s grape juice as if it were a wine. The fact that they are derived from the same plant does not mean that they should be treated similarly under the law. It’s not a hard concept to grasp – and indeed, we’ve managed to do so quite well in other cases. For example, both morphine and heroin are derived from the poppy, and yet we permit the medically regulated use of one while outlawing the other. It’s not rocket science.
In states where pediatric medical marijuana use is legal, anecdotal evidence about high CBD marijuana’s anti-convulsant effects is compelling. At the 2013 National Institute of Neurological Disorders and Stroke “Curing the Epilepsies” Conference, a survey (pdf) with 18 parents found that children taking preparations of CBD experienced significant reductions in seizures without suffering the range of debilitating side effects common to other treatments, and children were also able to reduce or stop taking other antiseizure drugs. Physicians, including the head of pediatric neurology at the University of Utah, are increasingly vocal about the need for action on CBD.
Happily, there are some signs of progress. Limited “compassionate” clinical trials initially involving about 125 patients, most of them children, are now underway with a CBD compound, Epidiolex, developed by a British drug company. The trial at New York University’s Comprehensive Epilepsy Center, overseen by Dr Orrin Devinsky, will evaluate the safety and efficacy of the compound for possible FDA approval, a process likely to take at least a couple of years. Meanwhile activist parents are focusing media attention on this issue, and politicians are slowly but surely taking notice. As Florida considers legalizing medical marijuana, it may fast track access to the high-CBD strain grown in Colorado, known as ” Charlotte’s Web” (named after the first child to take it, and who would likely have died without it.)
