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It was a small study, but potent: 15 people whose epilepsy was treatment-resistant enrolled in a trial. Of the 8 who received high doses of cannabidiol (CBD) for 4 ½ months, 4 became almost completely free of seizures, 3 had partial improvement, 1 had no improvement. Of the 7 placebo patients only 1 showed improvement.
This was the first-ever study that looked into whether CBD could treat epilepsy in people. It was published in 1980 – and ignored for over 30 years.
One of the authors of the paper, Raphael Machoulam (above), PhD, of the Hebrew University of Jerusalem, reflected on his work at the 2019 CannMed Conference in Pasadena:
Did we have to wait 30 years? No. We could have helped children. In particular children over these 30 years having 20 to 30 epileptic attacks a day. [It] really means that the child . . . cannot develop. We ruined a child we could have helped. Maybe thousands of children. . . . And I’m under the impression that this is what’s happening with quite a few of the other diseases.
The FDA finally approved CBD for the treatment of 2 forms of epilepsy in children, in 2018 – 38 years after Mechoulam’s study. Tellingly, it wasn’t the medical community who drove the approval process. It was the mother of a treatment-resistant epileptic child who, in 2005, heard that CBD might do the trick – and so began her heroic struggle to have the drug accepted.
The mother’s name is Evelyn Nussembaum, her son is Sam Vogelstein, and their profile in NPR offers some insight into how lives can be ruined by epilepsy:
Nussembaum said Sam was on a barrage of medications. Some helped briefly, others triggered hallucinations, full body rashes and uncontrolled anger that lead to him punching kids. Sam struggled to read, write, and solve math problems. Nussembaum watched her son fall further and further behind in school. “It was scary,” she says. “I would often cry in my shower or I would drive up to the top of Grizzly Peak [in Berkeley] and sit in my car and scream.”
But Sam got lucky – CBD worked: “After one day his seizures were down to 30” from 100, says Nussenbaum. “After two days they were down to ten. After three days he had one seizure.”
So here’s the thing: Mechoulam says we’ve again reached that 1980 knowledge point of CBD’s ability to treat “quite a few . . . other diseases.” ‘Quite a few’ indeed: he went over the evidence for some of them – graft versus host disease, diabetes type 1, and schizophrenia – and listed another 16 conditions that he didn’t have time to review.
His point is simple: he doesn’t want to see yet another 30-year gap between what we now know about CBD and the development of therapeutics based on that knowledge. He doesn’t want to see thousands of more children suffer needlessly the way the Sam Vogelstein’s of this world did. So his plea to the audience was this:
I strongly ask the clinicians here – please try to go ahead with modern clinical trials in most of the diseases that we’re speaking about, certainly in cancer.