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."
According to a new poll, 80% of Iowans support the legalization of medical cannabis. It seems that the majority of Iowans understand that this is about medicine and quality of life for their state's sick and suffering. Friday, March 3rd is the funnel for any bills to be filed so the next 5 days will be intense for my family as we hope and fight for a medical cannabis bill.
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.
As the medical cannabis issue in Iowa continues to stall and leave sick and suffering Iowans in the cold, it is often mentioned that families like mine should simply "just move". I am beyond lucky enough to say that my son is doing well from the Medical Cannabidiol Bill that allows us to stay home in Iowa but I fear that as he grows, his need for stronger cannabinoids will come into play.
So, why don't I "just" move? Moving for my family is not an option. Like many families that have medically complex children with special needs on top of it, we live on a single income. We have already given up more than most people could imagine. My husband and I sold our home and his truck so that we could move into my mother's home so that we can have help. My mother in turn, sold her home and is spending what could have been her sweet, quiet retirement after teaching for 30+ years and instead built a home for all of us to live in so that we could all help one another out. We wanted Abram to have that extended family that he so needed.
My mom sacrificed all the things she had looked forward to in her retirement so that we could give Abram a life that he deserves. My father and his wife help us out financially as well when we need it because living on a single-income and having to travel out-of-state multiple times a year to visit Abram's medical specialists and sub-specialists gets expensive. My husband uses all of his paid-vacation time sitting in hospitals and clinics and never takes a day off to just relax or go somewhere nice. We haven't had a vacation in 9 years - and even then it was a trip to the Dells. It was hardly a "vacation".
We rely on Medicaid to pay for most of Abram's services because even though we have Private Insurance through my husband's employer - it doesn't pay for much and it certainly does not cover all of the services he needs including his speech, occupational, physical, and feeding therapies.
It took us 3.5 years and 4 hospitals to get a diagnosis for our son and now that we FINALLY have a team of specialists and sub-specialists and therapists that are a good fit - we simply cannot give that up. Until you live a life of endless therapy and searching for the "right" medical team - you have no idea how hard it is to find a team that you trust. Our team consists of Neurologists, Sleep-Medicine Neurologists, Neurosurgeons, Endocrinology, Nephrology, Nutrition, Developmental Specialists, Occupational Therapy, Speech Therapy, Feeding Therapy, Physical Therapy and a specialized Pediatrician.
Once you finally have your inner circle, your team - you simply can't "Just move". I can't take my son away from my mom. I can't ask my husband to quit his job. We can't simply move to Colorado and live there on one-income if we are barely making it living in the lower level of my mother's house. Finding a medical professional is a hard task. Finding a team of them that you like, agree with and can find support in is basically a miracle.
So asking or telling someone in a position like ours is just cruel. I am one of the lucky ones. My son is doing well because a law was already in place when we needed it - because parents ahead of me fought hard to make it possible for my son to be well. To those mamas: I love you so much, I couldn't be prouder and I am honored to call you my friends. To the mamas and families that HAD to move: I love and respect you more than anything because I know what you had to give up.
I just keep hoping that the Iowa Legislature will "just" do the right thing and stay right here in the state where I grew up. Where my heart and my family is.
Yesterday, HSB 132 was pulled and did not go through the Public Safety Committee at all. To say that it is disheartening is an understatement. As a parent of a medically complex child who relies on medical cannabis oil to keep him safe and healthy, I just really cannot fathom the absolute cruelty that continues to go on for those who suffer in this state. I have so much more to say, but I will just bite my tongue. Next week is the funnel for the bills that will "make it" and I will just idly bide my time to see if anything happens for those who suffer at all.
It seems like we will probably only have a continuation of the 2014 Medical Cannabidiol Act - which tells families like mine that they are legal here in Iowa - but expect us to leave the state, go to another medical cannabis state, ask someone there to break the law to help us and risk arrest and prosecution in another state to bring it back. If that's all we get, I will be thankful. But I think it's just pure cruelty that our lawmakers continue to take the literal lives of their constituents in their hands when 80% of the state feel that a medical cannabis should be an option for our sick and suffering.
You can read the Radio Iowa Article here: https://www.radioiowa.com/2017/02/24/cannabis-oil-bill-shot-through-with-holes-and-stalls/
So far in 2017, there have been four medical cannabis bills that have been filed, here in Iowa with another one expected to be coming out of the Senate this week.
HSB132 - passed through the subcommittee today and would extend and expand the current Medical Cannabidiol Act. It is a huge deal that Representative Baudler (R), Chair of the Public Safety Committee (whom had opposed medical cannabis and who is a retired State Trooper), proposed this legislation.
This Bill would allow for private production, transportation and distribution of medical cannabis and would leave the University of Iowa to decide which conditions the cannabis could treat. I personally applaud Rep. Baudler for taking this one HUGE step in the right direction.
I would love to see the THC limit removed and for other forms of administration to come into play as oils can get expensive and adults need more oil per pound than a child. I also fear that limiting THC to just 3% is going to continue to fail the people this bill was meant to help - as many people need more THC and the full "entourage effect" of all the cannabinoids to gain pain-control and seizure control.
If you missed the hearing today and didn't get your chance to share your need to the committee, you can always write to your Representative and ask for their support or contact the folks in the Public Safety Committee who will vote on whether to push this on through to the House for a vote.
The news article covering today's hearing can be found here. I sadly was unable to attend as Abram had blood in his ear this morning and I had to wait for the Doctor to call me back. Many thanks to those of you who did attend and thanks to Tom for sharing Abe's story with the subcommittee.
This is Abram when he was around 7 months old. He was "globally delayed" on his milestones and within a few months, he began having absence and complex-partial seizures. Before his first birthday, we learned he had a mass in his brain. It took nearly two years and three world-renowned hospitals to diagnosis him with bi-lateral cortical dysplasia and that his entire life he was having non-stop subclinical seizures. He'd stopped progressing, he stopped making sounds (besides screaming and crying non-stop) and by the time they added in anti-epileptic drugs - he actually regressed - lost skills - lost the few words he did have and lost the ability to walk and crawl (skills he had just gained after YEARS of therapy.) Thanks to a brave Neurologist who told us privately about seeking out medicine from CO, our son's life changed for the better and we began using an organic cannabis oil. Our son's life has changed immensely and we don't want to go backwards, now.
With the legislative session in full-swing again - there are many states falling victim to the CBD-Only laws - just like Iowa. We are at least currently allowed up to 3% THC but with our bill set to expire on July 1 and no medical cannabis bill filed from the Majority - I am terrified of what is going to happen before the session in Iowa is up. The Minority party has already filed several medical cannabis bills but I'm guessing that as usual, things will fall upon party lines and instead of helping those who need it the most it will be a game of politics instead of a show of empathy and grace for Iowa's most medically complex.
There recently was an article written here in Iowa (along with news stations picking up the story) of our friend and his mama, who tried the pharmaceutical version of CBD and it did not work for him. Of course, in true media fashion and the drive for click-bait worthy news - the title of each piece was "cannabis oil doesn't work" which does a great disservice to families like mine who have been fighting for whole-plant cannabis (along with the mom in the article) since we started advocating. CBD-only helps a small percentage of the tiny percentage of people who benefit from Cannabidiol, alone. Children like Abram get better results with a full-spectrum whole-plant oil that includes the original terpenes and cannabinoids in the plant vs an isolated compound and do even better when allowed THC as a larger component of their treatments.
In addition, the pharmaceutical grade "CBD-only" medicines are a FAR CRY from the organic medicines that parents such as myself are asking for. The medicine that was discussed in the articles here claiming "cannabis oil doesn't work" actually has ethanol, sucralose (artificial sweetener) and artificial flavoring in it in addition to the CBD and sesame oil carrier it is put into. With children who are medically complex and are triggered by things from casein and gluten to artificial sweeteners and flavorings, it is beyond me why that is put into a "medicine" for a child.
I personally would prefer to know exactly where my son's medicine comes from including where the farm is, who makes the oil, how it's made as well as knowing exactly what is in it. My son's cannabis oil is organically grown, C02 expressed and is just two ingredients: the C02 expressed oil and it's carrier oil - organic safflower oil. His oils come with a batch number and labs that match the batch number to show me exactly what cannabinoids are in it and proof that it is free of contaminants.
The market right now is overflowing with crooks, scam artists and big-pharma pushing an agenda on our lawmakers to make it so that only THEIR drug will be re-scheduled at the state level and so that THEIR drug will corner a market making children like mine suffer who have already seen impressive results from the organic oils coming from actual farmers and humans who truly care about the people they serve. It's happening in Iowa and across the nation as big-corporate lobbyists are fighting against us to take away our right to choose the medicine that goes into our children.
I urge you to read the article posted below:
This little boy is 600 Days Seizure-Free, today.
He hasn't had an ambulance ride since 2014. He hasn't had an emergency visit since 2015. He hasn't had a long-term hospital stay due to seizures since the spring of 2015.
He's 100% pharmaceutical-free, now. He's walking, running, riding an adaptive trike, doing puzzles, learning zippers and buttons, can put his socks and shoes on with some assistance, is beginning pre-writing strokes and is attending an inclusive pre-school with the help of a 1:1 aid.
Cannabis is Medicine. Please, let the Iowa Legislature do the right thing for Medical Cannabis laws in 2017. Our current bill is repealing July 1 and we need your help to get anything passed this year.
Please. write to your Representative and your Senator and tell them that you support legalizing medical cannabis.
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
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