Today was a good day at the Capitol...

This morning, I drove to the Capitol to testify to the subcommittee on HSB 164.  I was relieved to hear at the start of the meeting that the bill is two separate pieces: 1) the extension of the 2014 CBD Bill that keeps our family legal in Iowa and 2) the re-scheduling of what is assumed will be an fda-approved medical cannabidiol (aka Epidiolex).  I want to start by saying this: I am in no ways anti-Epidiolex. I feel that if if can help some Epilepsy patients than all is well and good. However, I don't feel that it should be the only product on the market offered as a legal option.

I testified to the subcommittee and even had the opportunity to chat with Rep Baudler and Rep Hager afterwards so that I could show them my Medical Cannabidiol Card as well as share my son's medical cannabis labs, so that they knew that there are already consistent and safe products out there for families like mine to use. It seems highly likely that this bill will pass. The good: it will extend my legality for my son and my family which is clearly something I needed personally. The Bad: it still does not allow for access in the state and it does not extend the medical conditions to help other people. We've fought long and hard for a comprehensive medical cannabis program but it is a relief to hear that my son will still be legal in Iowa and for that - I must be thankful.

After the subcommittee meeting, I learned the Senator Zaun's comprehensive medical cannabis bill (SSB 1176) was filed and I was thrilled to see that it included my friend's medical diagnoses including Cancer, EDS, MS and Crohn's Disease. I hope it passes and I hope that the House does the right thing when it gets there.

Below is a news piece about what happened today. I think you may recognize Abe's smiling face in the coverage. 

I always have anxiety doing public speaking but here is what I said:
​
"Hello. My name is Erin Miller and my son, Abram is 612 days Seizure Free on cannabis oil. I am concerned that HSB 164 does not provide legal coverage for my son as it appears to be written specifically for what is assumed will be an fda-approved medical cannabidiol. It does not include verbiage covering those of us who have already been using the 2014 CBD Bill to obtain oils out-of-state. 

Abram was born with a rare gene mutation called UBE2A Deficiency Syndrome. It is characterized by brain abnormalities, seizures, autism, absent speech, aggressive self-harming behaviors and an intellectual disability. Abram suffered from non-stop subclinical seizures as an infant and due to a kidney deformity is unable to take many of the anti-epileptic drugs on the market. 

The pharmaceuticals he was able to try increased and worsened his seizures and greatly impacted his quality of life. In 2015, our Neurologist suggested we go to CO to try cannabis oil and he hasn’t suffered from a physical seizure since. This past November, our Neurologist at the University of Iowa removed the last pharmaceutical from Abram’s body.  Today, he is 100% pharmaceutical free on cannabis oil only and he is thriving.

Please note that children like Abram will not qualify for Epidiolex as he does not have LGS or Dravet. In addition, Epidiolex also contains ethanol, Sucralose and artificial flavorings which are known seizure triggers. Epidiolex also does not have any THC. My son’s oil is 100% organic and contains no artificial flavors or sweeteners.  Abram’s oil has a a wider ranger of cannabinoids in it including THC so that he experiences the entourage effect of the cannabis.

Our family has already been through so much. My son has had to fight to gain and re-gain skills that most folks take for granted. Just 10 days ago called me “mama” after a seizure and heavy pharmaceuticals took his words 3 years ago. You already gave us a law in 2014 to protect us. This year, we hoped that we would gain access in our state so we wouldn’t have to cross state lines with our son’s medicine. Now we are reduced to worrying if you will even include him at all.

I beg you. Please don’t forget my son. His name is Abram Miller. He is 4 years old. He loves kitties, firetrucks and giving hugs. He loves people and forgives easily. And he NEEDS organic cannabis to continue to thrive and be the happy and healthy little boy he is today. Please don’t force us to choose between being criminals and maintaining my son’s quality of life that he has fought so hard for."