Citizen Testimony for Ohio Senate Town Hall on Medical Cannabis
Nicole Scholten, Director Ohio Families CANN
Presented February 4, 2016 in Cincinnati, Ohio
Thank you kindly for taking up the issue of patient access to medical cannabis therapy. I am here today, as Director of Ohio Families CANN, a parental advocacy group with the sole focus of gaining legal access to effective medicine for our children. We’re a group that has been engaged in the political process on this topic, for over two years, meeting with statehouse officials. I’d like to introduce you to my daughter Lucy. She’s a pretty tough kid. She’s had more than her fair share of hardship from a catastrophic seizure disorder. It might surprise you to find that, though she is one of the most profoundly physically challenged kids you might ever meet, her epilepsy negatively affects her life to a far greater degree than her Cerebral Palsy. People with CP regularly learn new ways to move and use adaptive equipment to lead fulfilling lives. But when you are busy having and recovering from 100’s of daily seizures, there’s little time left for that kind of learning. I might add, she is not hard to love and I have seen her bring out the good in people.
We are here today representing many: Other OFC families who cannot be here today. At any given time someone from OFC’s 54 families is hospitalized, significantly ill, or quite literally just trying to get through the day with complications from a catastrophic sickness and the corresponding medication side effects. It’s worth mentioning that much of the care for the kids in these families is paid for by significant amounts of Ohio Medicaid dollars, while they hope, pray and wait for access to medicine that helps their children.
We’re here also representing our greater community of people who know and love our family. People of faith, young and old, conservative and liberal. Those people feel it is unreasonable that I would be restricted the right to treat my child, a kid with catastrophic epilepsy, with what is known to be a safe, non-toxic plant based medicine, that is currently improving lives in 23 other states. And there is legitimate reason to believe that it has a very good chance of improving Lucy’s life. Maybe the best chance yet in her 12 years and 12 invasive treatments.
She is a kid that’s trialed 10 different crummy FDA approved medications, a Vagus Nerve Stimulator, and the Ketogenic diet. All FDA approved, all have failed to improve her situation of 100’s of daily seizures that interrupt learning, happiness and relationships. None of those meds, mind you, were ever tested on kids as young as she was when she was prescribed them. For her, those medicines did more harm than good. With them came a need for oxygen, loss of body function, blood level monitoring for toxicity, liver damage, and glaucoma. Those medicines are sometimes responsible for death, which has never been the case with cannabis. And those medicines get children “high.” I used that word because it’s a stigma word attached to cannabis therapy. Some approved therapies have made her so dopey, they took her away from us. Some of them have street value. But we as a society were happy to allow her the right to use them. The accounts reported by parents and caregivers of children receiving cannabis in legal states point to cognitive gains, bright eyes and alertness. Children speaking and walking with notable progress.
Effective medicine where there was none. I would like the substantial accounts of parents to be recognized as valued. There are those that question, is it really true? Suggesting that parents, want it to work, so they think it does. This is a group of people who understand what a failed medicine looks like. They have tried dozens, yes hoping, but also carefully observing. Still one does not need careful observation to notice when 300 seizures become 10 or 0. And massive numbers of families do not uproot their lives to other states and stay there without the results they’ve been waiting for.
So how do we know that medical cannabis has a good chance of helping kids like Lucy? We certainly know it because of a substantial and growing body of scientific evidence that I expect will continue to grow as research barriers fall, as those power structures are shifting appropriately. Specifically, one of the earliest results would be the Devinsky Epidiolex trials in NY which report a mean reduction in seizures of 50% for participants. That’s a pretty big deal in the epilepsy world, considering a kid didn’t get into those trials unless they had difficult to treat epilepsy. So those results are not from the entire epilepsy population of 3 million Americans, but actually from the smaller population of folks for whom current treatments don’t work. Please do not confuse my appreciation of that study with approval for partial plant legislation. Our families are well aware of the fact that isolated cannabinoid therapy would limit this promising medicine and leave patients behind. We would therefore not support such a bill.
We also know cannabis could help because it is currently effectively changing lives in 23 other states. While I recognize the FDA approval process as a vital component of public health, it is but one way to know the effectiveness of a treatment. Devinsky himself has stated that the FDA has failed families like mine. You see, parents are resourceful. When a parent does not find success for the children they love within the scope of approved medicines, they will look elsewhere. They will connect with other parents. They will do things they never envisioned themselves doing for their children. If a policy does not take into consideration a parent’s tenacity, there will be problems with that policy. While I appreciate and agree that we should be moving toward the highest levels of study and knowledge about whole plant cannabis as medicine, the notion that Lucy should wait a decade for effective medicine, in the meantime is unacceptable. I believe any parent would feel the same.
What I’m asking is that we act in a timely fashion so that Lucy and this decade of Ohio children can appreciate benefits. Let us stand with the compassion of the American Academy of Pediatrics who just a year ago published a statement recognizing cannabinoid therapy as appropriate for our children, with life limiting disorders.
What I hope to leave you with, as you gather information on the topic of cannabis therapy, is an understanding that surface level information will not tell you everything you need to know. You will need to delve deeper and unpack some commonly held beliefs and protocols in order to do right by Ohio kids in need. A well-respected oncologist, Donald Abrahms has said, “If we were to discover this plant in the rainforest today, we’d be clambering over each other to try to make use.” But it just so happens that there is a long history and campaign of stigma and misinformation about cannabis. Let’s hopefully, at least, agree today that we have gotten some things wrong about cannabis. Children like Lucy, require us to look at this issue with a more in depth lens, and that may challenge some of our deeply held notions and accepted practices. But that is what is appropriate, maybe uniquely at this moment.
The families of OFC would like a continued opportunity to help further share our humble yet educated perspective. You should know that the OFC members and greater community of loved ones I represent will be looking for action to follow these Town Hall meetings. Please recognize that statehouse action and willingness to transparently keep our families engaged and informed, will affect our behavior in the landscape of legislation and ballot initiatives. We welcome the opportunity to support meaningful medical cannabis legislation from our statehouse because we feel that you are best suited for the job. I would again like to thank you for your attention to the matter of medical cannabis in Ohio.