“Charlotte’s Web” patient’s mom has mixed feelings on FDA-approved epilepsy drug

Posted at 9:03 PM, Jun 25, 2018
and last updated 2018-06-25 23:03:03-04

A major milestone Monday for use of marijuana for treatment of health ailments.  The FDA granted landmark Federal approval to a marijuana-derived drug to treat pediatric epilepsy.

Marijuana for epilepsy has strong roots in southern Colorado.  A trailblazing Colorado Springs mother helped thrust the treatment option into the global spotlight.  Heather Jackson’s son Zaki suffered so badly from seizures that he nearly died.  When prescriptions failed to work, a marijuana extract helped save his life and essentially cured him.  She says this is a step forward for other families suffering all across the country.

"By the time he was 5, he had had over 500,000 seizures," Jackson said.  As recently as six years ago, the seemingly simple activity of stacking blocks was essentially impossible for Zaki, now 15.  But thanks to a cannabis extract dubbed Charlotte’s Web, Zaki’s seizures all but stopped entirely.  "He was able to come off of all his pharmaceuticals and his condition went into complete remission for four years," Jackson said.

Zaki’s story and several others led to international attention, and even a mass relocation to Colorado by parents across the globe seeking treatment for their children’s seizures.  The FDA paid attention, and Monday approved Epidiolex, the first-ever prescription drug derived from marijuana.  "It feels like a huge success in a lot of ways," Jackson said.

The drug contains almost non of the psychoactive chemical from marijuana that makes people high and proved through testing to be effective in treatment of certain pediatric seizure patients.  But despite the landmark FDA approval, Jackson worries it could set the table for regulatory overreach.  Epidiolex contains only cannibidiol, one of hundreds of molecules found in the marijuana plant, and treats only two extremely rare forms of pediatric epilepsy affecting less than 45,000 children.  It is also vastly different from Charlotte’s Web, which Jackson says is essentially a dietary supplement with more than 400 natural chemical components.  "Stay in your lane," Jackson said, referring to Federal regulators.  "We want the whole-plant extracts that our kids are using and that have worked for them for years."

Still, Jackson is glad that her family’s experience could now provide new treatment options for other childhood seizure sufferers.  "It’s completely exceeded my expectations and now we get to make purpose of what happened to (Zaki) for ten years," Jackson said.

In the broader scheme, FDA approval of Epidiolex will likely lead to DEA declassification of CBD as an illegal Schedule I narcotic, which could ultimately open up opportunities for FDA approval of CBD for treatment of other ailments.