When he was six, Sam, son of Evelyn Nussenbaum, Berkeley's video story producer, had dozens of epileptic seizures each day. Nussenbaum and her husband, Fred Vogelstein, discovered that a cannabis-based drug made in the UK eliminated cramping. But they could not use the drug in the US because it was illegal. Her drive to bring medicine to the US finally proved successful. Sam is now 1
My son Sam Vogelstein pioneered Epidiolex, the first FDA-approved cannabis drug.
By pioneering, I mean: Our family found the drug, convinced their British manufacturer to give it a try, and helped with its movement and the way to the United States. It changed everything for us. I hope it changes things for many more patients and, just as importantly, leads to a new way of thinking and studying cannabis in this country.
Sam started treating Epidiolex in May 2013 to treat his seizures. free two and a half years. He has or had myoclonic absence epilepsy, which causes him to have up to 100 flashing, jerky attacks per day. He cracked a window with his head; Face down, hard, in a plate of spaghetti;
"Uncontrolled epilepsy disrupted his learning, playing and socializing and terrorizing our entire family."
The seizures started when he was 4 and 4 years old got worse when he was 6. Nothing we stopped did stop her – not two dozen seizure medications, the ketogenic diet or the corticosteroids that Moonface gave him like a cancer patient. When we found the way to Epidiolex, he had uncontrolled epilepsy for eight years. It disturbed his learning, playing and socializing and terrorizing our whole family.
Many adults with epilepsy smoke the pot to control their seizures. This is no secret for neurologists; Since one-third of the epilepsy population does not respond to epilepsy medication, patients take matters into their own hands. But children have the same poor seizure control rates as adults and should not smoke; The little we know about the effect of THC on the developing brain suggests that it is not good.
Since 2004, there have been rumors of the anticonvulsant properties of CBD or cannabidiol (another part of the cannabis plant and the active ingredient in Epidiolex) 19th century. But governments have made it almost impossible to study. I learned about it in a 2012 issue of British Medical Journal Seizure which had a work on how the compound functioned as an anticonvulsant in rodents. It was a ridiculously thin thread that I could hope for, but we had no other options. There was no other medication to try and Sam was not a candidate for surgery.
But getting a reliable source was tough. First, we tried CBD tinctures we had bought locally. But when we had them tested in the lab, they all had less CBD than their labels claimed, and some had none at all. Then we bought a pot with a scientist friend who also had a child with epilepsy. She found chemists to extract the CBD and they gave us each what we estimated was enough for two weeks. Both children responded, but the two weeks passed quickly and the chemists could not risk helping us again.
Then I read about GW Pharmaceuticals in London, a company that studied the cannabis plant with the permission of the British government. Epilepsy was not her focus back then. There was no such thing as Epidiolex. But they had greenhouses, their own crops, laboratories and regularly and systematically withdrawn cannabidiol and other cannabis compounds.
It's easy to hate "bad" drug companies. I am not pro or con. But they are good at something crucial in trying to treat a poorly understood, life-threatening disease – quality control. The medicine they produce is exactly the same from batch to batch, from bottle to bottle and from dose to dose. You do not think about how important that is until you can not rely on it.
I'm not a pro or con cannabis either. I never intended to treat Sam with any or all of the marijuana plants. I do not get warm when people congratulate us on treating them with something they see as a natural substance. I am relieved that doctors monitor the administration of this plant compound, which is isolated from the other compounds with which it normally occurs. If I had found a good science that a motor oil extract could help seizures, I would have followed it.
"If I had found good science that a motor oil extract could help seizures, I would have pursued that."
But I was pursuing Dr. Geoffrey Guy. And when I finally reached the chair of GW Pharmaceuticals in the fall of 2012, he was not surprised. While he was developing cannabis drugs for cancer pain and multiple sclerosis, he had read the same seizure studies I had. When he learned that Sam had responded to lab-powered CBD, he was open to let him try GW's; just not in the United States. Anti-cannabis sentiment was too strong here.
But it was legal for us to try it in London under medical supervision. We did that during Sam's Christmas holidays in fifth grade. And it worked. The day before Sam started the CBD extract from GW Pharmaceuticals, he had 68 seizures. After three days he had one in one day. We stayed for two amazing weeks, most of the time completely without seizures. Between several blood tests and EEGs, Sam traveled across London in an amusement park. We spent a day at the Science Museum. We rode the London Eye Ferris wheel. And then we had to go. It was not legal in the US, so GW Pharmaceuticals came to our hotel and took the rest. I wondered if I should steal it, but I kissed it.
Arriving home, we submitted applications to the DEA and the FDA to make Sam his own one-boy attempt so he could continue to get the drug. A few months later, in mid-2013, we received approval. Inspired by Sam's success with the drug, GW Pharmaceuticals began extensive studies at UCSF, New York University, the Massachusetts General Hospital in Boston, and about 30 other hospitals. The company briefly considered calling its connection SamCan, but ultimately opted for the more business-friendly Epidiolex.
Earlier this year, Sam and I traveled to Washington D.C. to report to the FDA about our experiences. About 30 people have testified. Sam spoke and was the only person to get applause. Some parents then came to us and thanked him for speaking on behalf of their children, many of whom were too ill to speak for themselves.
Now that Epidiolex is approved by the FDA, it could be in Walgreens by September. Still on the drug, Sam is seventeen, six feet tall, and will sleep on the weekends until noon, if we let him. He fights and his coach has just told him that he is ready to take part in tournaments. In autumn he starts in the 11th class. He had a few small setbacks that made us start a second drug a few years ago, but he has no more seizures. It's all so normal. Gratitude does not begin to describe what I feel.
Questions remain. Is Sam free from this terrible disease forever? Will Epidiolex always work for him? Will insurance companies cover it for him or anyone else once GW Pharmaceuticals praises it? Will it cost a fortune? I have no idea
But I know that I want to do the legalization of Epidiolex more than just stopping the seizures. I want to have its status as a legal drug to make it easier for scientists to get hold of cannabis and dissect it in the lab. With pot legal for recovery in so many states we should better understand it. Maybe we could quantify when someone is too stony to drive. It turns out that cannabis with high levels of THC can cause seizures in people who have never had epilepsy before. We should know why. Maybe more drugs can be made from cannabis. Maybe there is something that works better than Epidiolex. Maybe not. But it's crazy not to try to find out.