So far this year there were several medical cannabis bills that were filed. However, only one bill (HSB 132) made it past its first subcommittee hearing where Iowans pleaded for help once again - only to learn that the bill was pulled and shelved the very next day due to lack of votes from the Majority party.
I was reassured that HSB 164 will take it's place but sadly, that bill does not reassure me that my family will continue to be covered under the law. Yes, it removes the repeal date of the Medical Cannabidiol Act of 2014, but the rest of the verbiage is specifically regarding an FDA approved medical cannabidiol, also known as Epidiolex (assuming it will be approved).
There is no verbiage in the law that covers families such as mine who have already been Registered Medical Cannabidiol Card Holders and who have already been using out-of-state cannabis oil - just as the law expected of us in 2014. I am still waiting on clarification from the bill's sponsor and the sub-committee members, although I was told by one member that they would look at an amendment to cover children like Abram. I hope it's true. A hearing for this will be happening fast and looks like it will occur on Tuesday.
Families like mine who are seeing results are terrified that our legal-protections will run out. Many legislators expect we will be able to use Epidiolex without even realizing that most of the children the current law helps WILL NOT QUALIFY FOR EPIDIOLEX.
I personally have been very vocal about this because it continues to be used an excuse without our Legislators realizing (or listening to) the fact that not everyone with Epilepsy will qualify for it. Is it a great alternative for some people? YES. Do I think it needs to be included in the law? Yes. But I DO NOT think that it should be the ONLY option for Iowa's sick and suffering. Especially when the CBD Bill only includes those with intractable epilepsy (which excludes many folks who have epilepsy in general) and then continues to narrow the scope to just two types of epilepsy, period. This is NOT good.
My son's Neurologist is leading the trial for this drug at the University of Iowa and my son doesn't qualify for the trial. Epidiolex is for two types of Epilepsy, only: Lenox-Gastaut and Dravet Syndrome. My son has a newly identified type of genetic Epilepsy caused by both a chromosome deletion of 7q31.31 that pre-disposed him to Epilepsy and a mutation of the UBE2A gene resulting in what is UBE2A Deficiency Syndrome (which caused midline deformities to his brain and kidneys as well as his intellectual disability, the inability to speak, self-harming behaviors, generalized seizures and so much more).
In addition, Epidiolex contains ethanal, sucralose (an artificial sweetener and known seizure trigger) as well as artificial flavoring. If I had to choose between what is assumed will be an FDA-approved cannabidol product - I would not chose it. I want to continue using the clean, organic product I am using now that is made of c02 expressed cannabis oil and organic safflower oil and NO artificial anything in it at all. With medically complex children, you have to be safe with what you put into their bodies - especially when it comes to seizure disorders and children with behavioral issues like my son's self-harming.
Our only hope now is that a good bill will come from the Senate. However, I'm not sure what will happen to it in the House if/when it passes to get that far since the House Majority continue to block good bills that will actually help the sick and suffering in Iowa. I will keep my hope, hold my ground and share our story, regardless. But I won't hold my breath.