3/4/19 Adelaide also has lots of opinioins

One of the really cool things about having a podcast AND a blog is that I can approach topics from multiple angles and I’m finally going to take advantage of that. For this week’s, “Seizing Life” episode I spoke with CURE’s Chief Scientific Officer, Dr. Laura Lubbers, about the who, what, where and why of medical marijuana and CBD for use in treating seizures. She is incredibly talented at breaking the science down into palatable pieces that we can all understand. I’ll leave the scientific studies, definitions and details to her but I strongly recommend giving the episode a watch or listen. What I want (need?) to release into the world today is my personal love/hate relationship with medical marijuana and society’s perceptions. Let’s start with the question I receive more often than any other which is “have you heard of/thought about CBD/marijuana for Adelaide?”

For the record, the answer to every variation of this question is YES! We have heard of it, we have researched it, we have talked to her medical team about it, we have tried it. I had a bit of a tirade written here but Miguel strongly suggested that I rewrite it because it was “too bitchy”, but, gosh, it felt good to type! I will never express these feelings to someone’s face because my mother taught me better, but also, I know that their “seizure-splaining” (think mansplaining but for epilepsy) usually comes from a place of caring. These days most people know two things about epilepsy: they involve seizures and that CBD can be used to treat them. They hear my daughter has seizures and they immediately think of CBD and, usually out of an intense desire to be helpful, go to their only known follow up conversation point. I get it, so I will never say a word, but internally I am rolling my eyes so hard.

Behind the scenes filming “Seizing Life” episode 6 with Dr. Laura Lubbers

Now, I would like to note that this is a different question from “have you tried CBD?” Within the epilepsy community this is actually a pretty common question. That said, whenever a new drug hits the market those with uncontrolled seizures are asking each other if they’ve tried it. Here’s where I share our experience with CBD: it didn’t work. We ordered a vial online from a company in Colorado that specializes in CBD for epilepsy. We got the dosing information from an online resource guide on the company’s Facebook page because her doctor was not permitted to work with us on it due to FDA regulations. Who knows if we got the dosage right or if the vial of oil we got was the potency it said it was because we never got it tested. What I do know is that her seizures got worse and it put her at risk of liver failure when it interacted with another drug she was on. No, thank you.

That was two years ago and since then a CBD pharmaceutical has hit the market called Epidiolex. This drug went through rigorous testing and is FDA approved which means that doctors can now work with patients on dosing. We will likely try this drug for Adelaide, but not because it is CBD and exciting, but because it is the next drug on the list to try. To be clear, CBD is a drug treatment that has a chemical effect on the brain and according to studies helps significantly reduce seizures in 20% of the people who tried it; reduce, not eliminate… in 20%: this is NOT a cure. That said, I would be thrilled to see Adelaide have fewer seizures! It has also been known to increase cognition in many patients which would alone be incredible for Adelaide. But people aren’t talking about CBD and Epidiolex because of those it’s helped, they are talking about it because it is derived from weed. You could put together just as many news segments about those that have found seizure freedom from Onfi, Depakote, Keppra or any other anti-epileptic drug but it wouldn’t get the same attention. CBD and Epidiolex are additional treatments available for those living with epilepsy and we are grateful for every single one of them because you never know which treatment will help you or your loved one. Keep them coming! And thank you to all the advocates who helped fight to make CBD accessible to the 20% that it helps. But please remember that these are all treatments, not cures, that work for some patients, not all.

*Tangent warning*: It will be super interesting to see if the media pays any attention to fenfluramine when that (hopefully) hits the market in the next year or so. Fenfluramine was part of the weight loss drug fen-phen which was banned in the 90’s after patients had severe heart issues. It has been repurposed for treating seizures and early testing actually shows more positive results for seizure reduction than Epidiolex. Hopefully, they’ve figured out the heart stuff…

Be it social stigma, years of discrimination, lack of understanding or any of the other myriad of reasons - the epilepsy community has had to fight tooth and nail to be recognized. Marijuana to treat seizures has helped shine a spotlight on epilepsy and for that I am grateful. Now, if we could just expand that spotlight from a pinpoint on one treatment to the multitude of other issues facing this community, such as the lack of research funding, that would be something. As a reminder, according to a report released by the American Epilepsy Society, “Epilepsy is the second leading cause of death from a neurological condition and affects more people in the U.S. than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's combined, yet receives fewer federal dollars per patient than each of these.” If the conversations around marijuana and CBD can drum up more research dollars then that would make all the questions worth it. But I fear this flash point will fade as marijuana for medical, and even recreational use, becomes more mainstreamed. Until then, I promise to be outwardly patient with all CBD questions or at the very least I’ll just share this blog post. Is that too passive aggressive? Asking for a friend.