This letter is posted for reference in work I have performed or been involved in.
28 June 2014 – a letter to the U. S. Department of Health and Human Services requesting to reschedule marijuana on the DEA list of Controlled Substances
The Honorable Sylvia Mathews Burwell, Secretary
U. S. Department of Health and Human Services
200 Independence Avenue SW, Washington, DC 20201
Hello Sylvia –
I’m writing to you as a father of a daughter with cerebral palsy and epilepsy. I want to urge your support to change policies to support research of marijuana and to recommend that Attorney General Eric Holder reschedule marijuana on the DEA list of Controlled Substances to make it more accessible for compassionate use and research.
My daughter suffered an inutero stroke and was born with cerebral palsy. Her first seizures started at approximately 8 months of age and have only ever been partially controlled with a combination of prescribed medications and a ketogenic diet. The type and frequency of seizures has changed over time, and in 2010 became so aggressive that she would become unresponsive, stop breathing and turn blue during a seizure. Each time this happened we were helpless as parents. Each time it was like preparing to watch your child die in front of you. In 2011 we were fortunate that our daughter qualified for a brain surgery (Pediatric Peri-Insular Hemispherotomy) which severed the nerves connecting the stroke-damaged side of her brain. The surgery successfully stopped her seizures. It has been 2 years and 11 months that our daughter Natalie has been seizure free, and it still makes me emotional to talk about this because my family knows what it’s like to fight for someone you care so deeply about to not have seizures.
We continue to be involved in the Epilepsy community, and continue to advocate for people who have seizures. Utah was one of the first states to pass legislation that allowed use of CBD oil as a therapeutic solution that offers tangible and evident relief from seizures which are otherwise not controlled by medicine and diet (much thanks to Utah State Representative Gage Froerer for sponsoring HB0105S09). Still, I have friends in and out of the state who have children with Lissencephaly and Dravet Syndrome who are waiting for legislation, or are on a waiting list to be treated. I know one family that moved to Colorado just to become eligible for Charlotte’s Web. It is heartbreaking to know that there are barriers to a seizure treatment that would improve quality of life and save lives.
Please show support for research of marijuana when it comes your time to weigh in, and urge Eric Holder to reschedule marijuana on the DEA list of Controlled Substances. Your stance on this topic and changes in DEA policy can offer hope to families whose lives are impacted by epilepsy. There are viable treatments to significantly reduce seizures for some people who are not otherwise able to control their seizures.
Thank you,
Greg Green