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 do 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.
Dear Mrs. Miller,
Thank you for taking the time to contact me about the use of marijuana for medical purposes. It is important for me to hear from folks in Iowa on policy matters such as this. Additionally, thank you for sharing your personal story about your son and your family.
Currently, some form of marijuana usage is now legal in 38 states, including Iowa. As you know, the medical use of cannabis oil extract was legalized in our state in 2014, and I supported this measure during my time as an Iowa State Senator. Cannabis oil is derived from marijuana plants and is typically used to treat epilepsy. It has high concentrations of cannabidiol (CBD), a non-psychoactive antioxidant, and low concentrations of tetrahydrocannabinol (THC), the mind-altering compound found in marijuana. Though I supported this narrow, limited use of a marijuana plant extract, I have concerns about the opening of medical marijuana dispensaries and the use of medical marijuana in general.
The concept of using marijuana for medical purposes is relatively new and the science surrounding it is still developing. Before being introduced to the market, commercially available pharmaceuticals are subject to years of research and testing in order to prove their efficacy and safety. As you may know, marijuana is classified as a Schedule I substance, a label assigned by the Drug Enforcement Administration (DEA) to drugs which it deems have high abuse potential and no medicinal value. Many contend that this classification makes it more difficult for scientists and researchers to study marijuana.
I understand that a number of patients, including children like your son, are struggling with chronic diseases and use marijuana for treatment. More research needs to be done on the medical use of marijuana and I would also like to see more evidence that the substance can be distributed in a safe, responsible, and controlled manner.
Please know that I will continue to keep your views in mind as Congress continues to work on this issue. Feel free to contact my office with any further information, as I always enjoy hearing from Iowans.
Joni K. Ernst
United States Senator
Last night was my first town hall meeting and the very first time that I spoke publicly about my son's health care issues and needs. It was hard for me to do and very emotional. I was so nervous when I was handed that microphone that my heart was beating in my chest. I honestly can't even remember exactly what it is that I even said but it went something like this:
"Hi. My name is Erin Miller. My son has been a patient of Unity Point since he was a tiny baby. Your Neurology Department found the mass in his brain at 10 months old. They guided us through his first Ambulance Ride and following Hospital Stay and they were the ones who gave us our son's Epilepsy Diagnosis last October. Your Neurologist also was the person who encouraged us to try CBD and then was unable to sign our card for us. So, I'm curious as to why your Hospital has a policy against CBD when your Physicians feel otherwise".
As I said this, I could see the woman sitting next to me furiously shaking her head "no" and instead of allowing the Nurse Practitioner (who was the one speaking at this event) to answer, the woman seated next to me was handed the microphone.
She introduced herself as Chaney Yeast, and promptly informed me that what I was saying was incorrect and that they do not have a "policy" against CBD. I don't recall what else she said because I was absolutely floored at what I was hearing. As soon as I heard her say her name I knew exactly who she was. Unity Point's lobbyist who fought AGAINST the CBD Bill in 2014 was sitting right next to me. She also happens to be the Manager of the Regional Child Protection Center at Blank Children's Hospital.
When I first started getting involved in legislature, I read about Chaney Yeast in the news because she was the woman who stated publicly that “We don’t know if families use it for their children that maybe four years from now they could contract cancer or something like that.”
I found it interesting that a woman in the crowd was trying to tell me what I have lived and experienced for the whole of 2015 was untrue. I let her know (with microphone in hand) that their own COO had spoken with me on the matter and that I have a letter from him admitting that they won't back it until the FDA approves the use of such oils.
We each only had 3 minutes so that conversation went quickly but I scooted next to her on the bleacher and showed the before and after photos of my son and told her of all the improvements that he has made courtesy of the CBD. I explained to her that her Hospital was unable to help us on more than one occasion and that it was difficult to understand how a Physician can tell us behind closed doors to try a medicine and then not give us legal access by signing our Application for a Registration Card. I reminded her that I'd written to their CEO and their VP only to be ignored. But she held fast to saying that none of their Neurologists feel comfortable with CBD or signing for anyone.
I was hoping that hearing what we'd gone through with the ups and downs of diagnoses and medical emergencies and their own physicians throwing their hands up in the air and admitting defeat in not knowing how to help - and admitting to us that they didn't know what to do would make her realize how poorly their hospital policy is affecting people. But... she held on to her point that Unity Point does not have a "policy" against CBD - that they are just waiting for FDA Approval. However, they as a Hospital actively lobbied against the CBD Bill in 2014 and will clearly continue to do so which breaks my heart for all of the other children who suffer, who need help and who are being ravaged by pharmaceutical drugs.
So, I decided to look up the definition of "policy" to see for myself if I was missing something. What the difference is between not acting on helping a patient (while waiting for approval from the FDA) and the literal definition of "policy" was. Here is what I found:
noun, pol·i·cy often attributive \ˈpä-lə-sē\
Definition of POLICY1. a : prudence or wisdom in the management of affairs
b : management or procedure based primarily on material interest
2. a : a definite course or method of action selected from among alternatives and in light of given conditions to guide and determine present and future decisions
b : a high-level overall plan embracing the general goals and acceptable procedures especially of a governmental body
Perhaps I am just reading the Dictionary wrong but it seems to me that their actions definitely prove that what they are doing is indeed a "policy" but that is clearly my own opinion. As a mother whose child has been directly impacted by this (non) policy - this is just hard to swallow. I just don't understand why they aren't helping.
She tried telling me that we are on the same team and fighting for the same things but I disagree. I don't think that it is okay for a Physician to tell a scared set of parents with a sick little boy that a) they don't know how to help and b) tell them that they should give CBD a try and then not actually be able to help. She told me that she knows that none of them are comfortable signing for the cards. In my opinion, it is wrong for them not to sign when they themselves felt that it would benefit our child. A hospital's non-policy or hesitence to not help and even hinder the cause says everything that it can possibly say without even uttering a word.
Clearly, I am thankful that our Physician told us to try CBD a handful of times before we finally decided to pursue that option. If he hadn't done so - my son would NOT be seizure free today. My son wouldn't have those awful side effects from CBD like cognitive gains, sleeping, eating, playing with other children, actually being able to play with toys and improving on his fine and gross motor skills like a champ. That physician saved my son's life. And even though I am angry at him for not standing up for what is right or what he felt was best for our child... I am thankful for him telling us about it. I understand that he is an employee and has to follow the guidelines set upon him by his employer like anybody else. It just happened to affect my family personally and I took it personal as most rational people would.
Last night was an emotional night for me and of course I barely slept a wink because all I could think about was "what if". But I can't think that way anymore. I'm changing all those "what ifs" to What Now.
I am doing all that I can for my son. I am a good mother. I am a fighter. I am an Advocate and now that makes me an Activist, too. Standing up for what you believe in is hard. I sat in those bleachers with tears pouring out of my eyes as I spoke to that woman but I said what I wanted to say.
We definitely aren't fighting the same fight but in the end, she gave me her card and I shook her hand. I just hope that she listened and actually heard.
TODAY marks 115 days SEIZURE FREE courtesy of CBD.
Hey there Everyone!
I'm feeling scared lately. I had been asked to do a story on the News - just sharing Abram's story from the start and how hard it has been to first and foremost - get proper medical care for a child that is so very medically complex and lastly, having legal access to a medicine that he needs so badly. I chickened out on doing the story after getting advice from other parents/advocates in other legal states.
I have written every Iowa Senator twice and have only gotten a few responses. I have written every single Iowa House Member twice as well and have started down the long line of calling home phone numbers (don't worry - they are posted publicly on their own website and completely legal). Most don't return my phone calls either.
I have spoken with US Senator Grassley himself, I have spoken with US Senator Joni Ernst's Regional Director (still waiting for an official response from her) and I have met with the Iowa Governor's Health Advisor since the Governor is entirely too busy to meet with a worried mama regarding a bill he signed himself.
I was told by the Governor's Health Advisor to reach out to the Iowa Department of Health who were by the way, absolutely sympathetic with our story - as is most people who hear it - but the law is the law and there is no way to get a Registration Card through the back door as I was led to believe. Yesterday was a hard day after several phone calls and exciting prospects only be be shoved back in the mud.
I'm trying but I'm getting the steam knocked out of me. Only 72 people have been issued cards in our state. That is not many people getting help compared to the large amount of money our state spent on implementing said cards. And when you realize that of those 72 cards - most of them are probably care givers over actual patients. The fact is - when you sign up for a card - you also have to sign up anyone and everyone who would need to be able to administer the medicine. So for our family - we would need 3 cards just for us. However, that isn't even counting any of his care providers like Respite or SCL who can administer psychotropic drugs like Valium to my child in an emergency without needing such things in place. My son CAN NOT overdose on a medicine like CBD but we have tubes of Emergency Meds that are considered controlled substances that could kill him if he were overdosed on them and no one blinks an eye. How is it that people are MISSING THIS?!
Being vocal about this is scary. Being open about it is scary. I backed out of the News Story out of FEAR. Fear that someone will take my child away. Fear of being thrown in jail for doing what is right. Fear of having his medicine taken away even though one of the Country's Best Hospitals who have a Level 4 Epilepsy standing back and support it 100% and I have proof of that within his own medical records.
I'm sad and I'm frustrated and I want to do the right thing. Standing up for what you believe in has been such a vital role in my life - my whole life. Doing that is right is scary. My son is seizure free and that is what matters the most. But the story that goes with it..... matters. He is not just a "sympathetic story" as Gov. Chris Christie claimed when CBD was brought up in the Republican debate weeks ago. My son is a boy. A human. A child. My baby. My LIFE. My absolutely everything.
And to think that me standing up and saying "Hey... our own Hospital and Physician betrayed us, the law isn't working for us and no one is helping." can land me in jail just because I said it publicly is horrifying.
I've tried my hardest to do the right thing and play by the rules. I have written so many emails when I could be relaxing or reading a book. In my downtime, I am pleading for help from anyone who will listen. I don't get to relax or have "me" time because I am always having to fight for my son's rights. When you have to fight so hard just to get good health care - only to turn around and have to fight for his medicine - it is hard not to get angry.
Change needs to happen and it needs to happen now. For him. For you. For your kids. For all of us.
Hello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis.
MOST POPULAR BlOG ENTRY