An Open Letter to Joni Ernst Regarding Iowa's Cannabis Oil Bill

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Note from desmoinesdem: Cross-posted from the Abram Mayhem blog. The Iowa legislature adopted and Governor Terry Branstad signed into law a measure to legalize cannabis oil for some seizure disorders in 2014.

Dear US Senator Joni Ernst,
I was in the Drake Diner in Des Moines, Iowa the day you came to celebrate your win for the US Senate. I was sitting in the booth right by the front door. I had my small son who was two at the time and you had a large group in the back who cheered loudly and clapped for you as you came in.

You didn’t notice that when your group of supporters began screaming for you, that my son slammed his head twice on the edge of table. The noise your group suddenly made (without regard to any of the other patrons) both terrified and overwhelmed him. The metal edging on those old vintage-style tables there really did a number on my son’s forehead and he had a lump and a bruise for over a week. Two of your supporters noticed my son in hysterics as they walked by. Instead of smiling or offering some form of apology for the uproar, they sneered at us as I was trying to calm him down. I’m sure they saw the huge welt on his forehead and thought of me as a terrible mother. They were both still smoking outside when we left.

You didn’t acknowledge my son that day in the Diner and you aren’t acknowledging him now. So, it didn’t surprise me when you accidentally sent me the response to “crude oil” instead of “cannabis oil” to my e-mail. It’s those little attention-to-details things one has to do when someone truly cares about their people. I was pleased to see that I received an additional e-mail today with your response to “cannabis oil” instead of “crude oil” today.

The bare-boned truth here is you didn’t take the time to actually hear what my real concerns were at all. My name was just pasted into a bulk e-mail (just like the “crude oil” response) and sent on out, without any real regard to what is happening to people in the Unites States of America, let alone your home state, Iowa. You yourself claimed in your campaign that you are a “normal, everyday” Iowan. If that were true, you would listen to the concerns of the mothers and families in this state who are reaching out to you for help in Iowa and in Congress.

I was fully aware that you supported the extremely limited bill in 2014, as an Iowa Senator. That is precisely why I reached out to you. You spent a great deal of your letter explaining to me what CBD is. Clearly, I already know what Cannabis Oil is used for or I wouldn’t have been reaching out to you for help in the first place. My son has Epilepsy, a Genetic Brain Disorder, a Rare Chromosome Disorder and a long list of other diagnoses you have never heard of and thanks to CBD, my son is 125 days seizure free today!

I reached out to you because I wanted you to know that the “narrow limited use of a marijuana plant” is not working for my particular situation or hundreds of other families. I wanted you to know that children are suffering in your state. Parents are forced to walk a supposed “grey area” in the law and fear that their children will be removed from the home because they are doing what is right. I reached out to you because our own Neurologist (who we’d seen since my son was 10 months old) told us we should to try CBD and was unable to help us. I reached out to you because our state capitol’s only Children’s Hospital will not back its use without FDA Approval and our Neurologist had to follow protocol. I reached out because that same Hospital actively lobbies against important bills that could help children like mine at the State House. I reached out to you because suffering children and adults need you to stand up and do what is right in Congress to fix things for families like mine.

Never once in my conversation with your Regional Director did I request “the opening of medical marijuana dispensaries and the use of medical marijuana in general” as you mentioned in your letter, although I feel that is the obvious thing to when you pass a law for things like CBD but don’t allow access, like we have here in Iowa.

​What I did request was help for my son and for the children in Iowa to have a chance at using a natural, plant based medicine as opposed to the Pharmaceuticals that just keep piling on with every serious seizure. Pharmaceutical Drugs were the worst thing that happened to my son, thus far in his life. Not only did they create new and worsening types of seizures – they took away his ability to walk (for which he worked for years to be able to do) and they took away his words after a serious fit of side effects from the Klonopin. (We later found out he was on too much but that took us going to a World Reknown Hospital hundreds of miles away from home and five months waiting on referrals.) The Keppra he was put him on made him have serious behavioral issues where he did not stop screaming or crying for nearly 14 days straight before our Neurologist pulled him right back off of it.

You claimed in your letter that the “concept of using marijuana for medical purposes is relatively new and the science surrounding it is still developing” but that simply is not true. The research is there and in fact, the United States Patent 6,630,507 now held by the US Department of Health states cannabinoids are “substantially free of psychoactive or psychotoxic effects, are substantially non-toxic even at very high doses, and have good tissue penetration, for example crossing the blood brain barrier.” In order to hold a patent, did the Government not do enough research themselves? Cited references within the US Patent go back to 1942 so clearly it is not a new concept at all.

My son is not a sympathetic story. My son is a little boy who deserves the same quality of life that all of six of your grandchildren deserve. He deserves the right to think and laugh and smile and be awake and alive instead of being drugged into a stupor on Pharmaceutical drugs whose side effects can be worse and more damaging than the seizures themselves.

If you truly understood how patients, including children like my son are struggling, you would not hesitate to stand up and do what is right in Congress. You have the power to help suffering Iowans and Americans alike.

Sincerely,
Erin Miller

  • Joni, accept a meeting with a certified Cannabis RN

    Erin,
    CBD oil is medicine and will continue to heal your son’s brain. The doctor’s at Mayo clinic both acknowledged and celebrated your choice, as do I. The state of Iowa must move forward and both expand and make our law permanent. We must also take the step that makes us legal, and notify the federal government that Iowa has declared by law in our state that cannabis does have medicinal purposes and does not meet schedule 1 criteria when we pass new legislation. Your child should not be a criminal under state and federal law for needing CBD oil, which has kept him seizure free for almost 130 days. The question is no longer one of is this medicine or do we need more research. We have 40 states with laws on the books. The issue now is our State Senators representing the voices of those who elected them, not a party platform, not religion, not outdated reefer madness. Look at true science. Look at Federalism. Learn about the entourage effect. The endocannabinoid system. Joni Ernst, I am Iowa’s only Certified Cannabis RN please sit down and meet with me and really learn how CBD works in the brain and body. When you vote on these issues that affect the health and could alleviate the suffering or will heal thousands of your own constituents, shouldn’t you strive to seek true education? Sincerely, Shelly Van Winkle RN

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