Vogelstein chronicled his family’s experience in a piece published earlier this year in Wired, where he is a contributing editor. Vogelstein and his wife obtained, through great effort and expense, a pure form of CBD or cannabidiol, a component of the cannabis plant, for their son Sam, now 14.
Almost immediately, Sam’s seizures dropped from dozens a day to a handful.
Vogelstein, who lives in California, is in Portland this week as a speaker at the Oregon Bioscience Association’s annual conference, where he’ll talk about the need for medical research into marijuana. He took a few moments to talk with The Oregonian/OregonLive before the start of the conference. The following has been edited for length and clarity.
First, how is Sam?
He’s great. He is not seizure free. One of the things about a piece like this is no matter how hard you try to make it clear your kid isn’t cured people just go there anyway. But getting him from 10 to 20 seizures an hour to less than 5 a day is a very, very big deal. It’s kind of changed his life in enormous ways.
How did Sam react to the piece?
He really wanted the story told. We spent a long time talking as a family about whether or not we were going to do this. Sam said we really have to tell this story. People need to know what this looks like. He understands that telling this story can help other kids. His reaction was, ‘bring it on.’
You’ll be delivering a keynote speech at the Oregon Bioscience Association’s conference this week. What’s your message?
One of the things I am going to talk about is we are in a strange transition period where in Oregon or Washington or Colorado or Alaska — the four states that have made recreational use legal – it’s now easy for anybody to buy and use cannabis recreationally. It remains next to impossible for a scientist or a doctor to study it.
We are now at the point where people think CBD might not only be useful to treat epilepsy but also to treat certain kinds of pain and diabetes and to treat Parkinson’s and to treat a whole bunch of neurological disorders, but it’s not like anybody can make it in their backyard. You actually have to know your way around a lab to pull the CBD out of the cannabis plant.
If you a have a career at a major university that relies on federal funds, you can’t be doing stuff that is against federal law. We need to understand what we are doing and ask ourselves is this really what we want to do?
I sometimes wonder if one of the solutions for the scientific community is to come up with a different vocabulary to talk about cannabis. People have names for pot that are still rooted in my stoner days. It’s like they are all out of the pages of ‘High Times’ and that is totally fine, but my point is I think that when scientists and researchers get sucked into that vocabulary they sort of damage the credibility of the work they are doing.
Have you gotten negative feedback about giving your son cannabis as medicine?
Not really. That isn’t to say it isn’t out there. If you are going to write about your family’s journey using cannabis or a derivative of cannabis to help your kid you need to understand that you are wading into one of the most controversial and emotionally charged topics that exists.
There were a bunch of times when I was working on this piece when I said to my wife that I don’t think we should be doing this. This is insane. It’s like wading into the middle of a debate about gun control or abortion or religious freedom.
Are you referring to the decision to write about the experience or the decision to treat your son with cannabis?
Writing about it. Pursuing the treatment was never any question. We were completely out of options. This was absolutely the last thing that we could have tried.
What do his doctor’s make of his progress?
Our physicians are as elated as I am, not just because it’s helped Sam, who they have treated for a long time and have been frustrated trying to find a solution that would work, but as a result of Sam’s reaction, the company that makes the medicine decided that it wanted to make it available to a lot more kids to see if it had the same kind impact.
So Sam’s reaction gave the company that makes the medicine the confidence to say let’s see if we can’t get permission to try this not only on one kid at UCSF but 25 kids at UCSF and let’s see if there are a handful of other hospitals that are around the country that would also be interested.
It’s not a miracle drug in the sense that it only helps half the kids, but those are kids like Sam for whom no other drugs had been previously effective. All the kids in the trials are kids like Sam who have tried every other medicine under the sun unsuccessfully and gotten no relief.
If this drug moved that needle it would make it one of the most important epilepsy drugs ever invented.
September 10, 2015