This Bill May Help Save Our Son's Life

Saturday, January 25, 2014

The Tennessee General Assembly is beginning to consider a bill (HB 1385) known as the Koozer-Kuhn Medical Cannabis Act.  We are strong supporters of this legislation out of necessity—it may help save our son’s life.

Like one of the namesakes of the bill, Piper Koozer, our 11-year-old son Aidan suffers from devastating seizures every day.  Aidan’s seizures have been unresponsive to special seizure diets, surgery (the implantation of a Vagal Nerve Stimulator) and 18 different individual (and even more combinations of) anti-seizure medications, many of which carry heavy psychological and physical side effects. His seizures have worsened such that we now frequently administer an emergency medication called Diastat just to get the seizures to stop. 

The seizures have cost Aidan dearly.  He is no longer even able to engage in minimal levels of self-care. He now has the tremor of a person with Parkinson’s. His development has halted, and he often retreats into his own world.  The prolonged periods of uncontrolled seizures place him in the very highest risk category for Sudden Unexpected Death from Epilepsy (SUDEP). 

Fortunately, the Koozer-Kuhn Medical Cannabis Act gives us hope.  This act would allow for growing, harvesting and using the non-psychoactive component of cannabis known as cannabidiol (CBD). 

A number of studies over the past 40 years of animals and human adults have shown the anti-seizure effects of CBD.  More recently in Colorado a young girl named Charlotte Figi, who has a condition very similar to Aidan, was experiencing a horrifying 1,200 seizures per month.  After treatment using a high CBD strain of cannabis, she now has 1 or 2 seizures per month. 

There are several other cases in Colorado and California of children experiencing similar effects. A recent survey of parents from these states showed 70% report greater than 50% reductions in seizures for their children as well as improvements in alertness, development, and mood.  For children with intractable epilepsy, these results are remarkable. 

It is cases like Charlotte’s and this emerging evidence that have caused prominent physicians like Sanjay Gupta to reverse their longstanding objections to medical cannabis.  However, for us to take advantage of high CBD cannabis and experience similar results it needs to be legal in Tennessee.  If we were to go to Colorado and transport it across state lines we would be breaking federal law. 

We realize the issue of medical cannabis is a complex one and the Koozer-Kuhn Act is broad. But it is essential to producing the type of medicine that could stop the seizures Aidan and so many children in Tennessee suffer every day and night. 

The medicine the children need requires refined CBD strains of cannabis.  That means there is almost zero tetrahydrocannabinol (THC), the main component that produces the “high” from cannabis.  To treat seizures, the refined CBD cannabis is extracted into an oil that can be put into a capsule or food for intake.    

In addition to its substantial benefits for seizures, it also has been shown to have virtually no side effects.  It is so promising that 20 states have passed laws and many of our neighboring and nearby states (Kentucky, Alabama, and Florida) are considering making it legal as well.  

We hope that Aidan’s story and the emerging evidence from children like him will move you to consider and ultimately support the Koozer-Kuhn Medical Cannabis Act. 

It is the last, best hope our family has.

Tim Vogus

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