It's easy to get wrapped up in the negative aspects when it comes to being "politically active". I never thought I would be at the Iowa State Capitol begging for law changes but then again, I never thought that I would have to fight for my son's basic RIGHT to have access to the medicine his physicians feel is best.
I started advocating for law change last year when I realized how Iowa's 2014 Cannabidiol Act was not helping me. Not only is the "intractable" part of Epilepsy not a standard diagnosis for everyone with Epilepsy but even though our Neurologist suggested we try CBD, he was unable to sign for us due to his hospital's policy - a policy they have since changed. We were stuck in the middle of being "legal" and doing what our physician felt was best for our child.
The only way I saw how to fix it was to start advocating for law changes. I feel that anyone who suffers from epileptic seizures should have the right to try this medicine along with any other human suffering from terminal illness or any other medically complex issue.
I had no idea how to contact my own Representative, let alone what to say or how to say it. I reached out to my local Senator Jake Chapman and Representative Ralph Watts. It took about three emails and a couple of phone calls to get a response but to be fair - legislation was out of session. Senator Chapman was kind enough to take his time to come to our home and meet our son and to hear our story. However, he did tell us that he had voted against the previous year's attempt to legalize medical cannabis in Iowa. My Iowa House Representative Ralph Watts finally did call me back after I sent him the MRI image of what is residing within my son's brain and I was just told that CBD was a grey area in the law and that I needed to do what I could for my child.
I reached out to every single Republican House Member because I knew it was they who had blocked the medical cannabis bill in 2015. Out of several hundreds of emails, I only got a handful of responses. Most of them were against cannabis or felt that my issue resided with my local Representative. You see, if you aren't their constituent, not many of the Republican House Members will respond to you at all - even though their often times ill-informed opinion of medical cannabis will vote against your child and your family's well being.
It took us SEVEN MONTHS to obtain a Cannabidiol Registration Card in the state of Iowa because we had to find a new Neurologist when our local physician told us our son's case was over his head. My son's diagnosis took two trips out-of-state to the MN Epilepsy Group and Mayo Clinic as well as establishing a new relationship with a Neurologist at the University of Iowa. However, after numerous Representatives told me that I needed to do what I needed to do for my child, I was illegally healing my son for all of those months.
In the last year, I have done more politically than I ever thought possible. I have gotten numerous opinion editorials published in Iowa's papers focusing on Iowa's own US Senator Grassley before and after I met with him personally. Senator Grassley is the sole person responsible for the CARERS Act not getting a hearing in the Judiciary Committee at the Federal level. I have also met with US Senator Joni Ernst asking her for her support of medical cannabis at the local and state level but you can read about those encounters in their respective blog posts.
My point is, what happened this year in Iowa with Medical Cannabis was a sham. Parents and Iowa's sick and suffering were at that Capitol every single week fighting for the legalization of medical cannabis and hoping that Iowa's House Members would include their condition in the list of "qualifying conditions" if a medical cannabis bill were to actually pass. What happened in the last weeks of the session were terrible. My own House Representative who had taken my family out to dinner, went on the radio and stated that my son's story had changed his mind on medical cannabis turned his back and changed his vote when it truly mattered. Instead of an actual medical cannabis bill, the Republican House members instead introduced yet another CBD ONLY bill that expanded conditions (except the conditions it was expanded to would NOT be helped with a high CBD and low THC cannabis oil) and they also felt that sick and suffering Iowans still needed to go out-of-state to get their medicine.
Yet, the Iowa House Democrats were the ONLY ones who stood up to speak on behalf of their constituents during that farce medical cannabis debate. It was the Iowa House Democrats who continually reminded House Leadership and the House Majority that Iowa's sick and suffering need access to medical cannabis within our own state. As the legislative session moved on, I specifically realized that Representatives like John Forbes, Bob Kressig, Dave Jacoby, Sharon Steckman and countless others would not only fight for us but they would stand up and be the voice for those who cannot speak. There were many other House Democrats who stood up and spoke on behalf of their constituents who I haven't had personal conversations with as well who made me tear up as they spoke.
If you'd like to watch Iowa's maddening medical cannabis debate, it can be seen by clicking here. Many people fell for an article that was published shortly after the debate that was about seven sentences long, stating that "Republicans had rallied behind the bill, but Democrats argued it wouldn't work." It blew up on Facebook and even several people I know personally were trying to convince me that it was the Democrats who voted down my son's chance at a medical cannabis bill. Those folks apparently failed to read a more in-depth and educated article published by the same news channel that explained how and why that bill failed to pass.
I was sitting in the Gallery watching this mess of a bill get debated and voted down by BOTH Democrats and Republicans. I listened to the House Democrats explain that this bill would not work for those it was intended to help and why they were voting no. They voted against it because they knew it wouldn't help their constituents who are already suffering at Iowa's current flawed law. Iowa lawmakers told us to go to another state in 2014 and families and patients have been fighting for that law to change since the moment it was passed.
To clarify, it was the Democrats who tried to get an amendment passed that would have actually helped sick and suffering Iowans get access in Iowa to medical cannabis but the House Leadership killed it.
It was the Democrats who tried again and again (and again) to pass an amendment in the last week of the legislative session. In fact, what could have been a Historic Day in Iowa's House when Representative Kressig called for a Rule 60 to SF484 on the Floor Calendar, all but two Republican House Members voted NO against the last chance for an actual medical cannabis bill. The Republicans who had promised us that they would stand up and vote against their house majority did not stand up for the sick and suffering and instead fell right into line with their political party instead.
In fact, there was laughing when the vote for Rule 60 was happening. I was sitting the Gallery and I could hear people laughing - just like I could see people laughing and watching videos on their Ipads during the medical cannabis debate. I was so offended that people could laugh and make a mockery out of what I saw was my son's last chance to legally obtain medical cannabis within his own state. I sat there in shock as it happened so quickly and I was so infuriated by the laughter that I could hear my heartbeat in my ears. Especially since I sat and watched my Dallas County Representative Ralph Watts vote against my son. Especially since he had publicly stated how my son's story had changed his mind. I feel foolish for having sent he and his wife a bouquet of flowers thanking him for caring about my son. I see now he never actually listened or intended to vote "yes". He voted "yes" in a committee - knowing full well the bill would be stalled and killed - while looking like he helped or supported medical cannabis in some fashion. His vote in particular broke my heart.
When the families and patients went to the lobby after the vote, it was Representatives Kressig and Jacoby who came out to make sure that we were okay. One lone Republican - Representative Cownie also came out to share his condolences because he was just one of two Republicans who voted to do the right thing that day.
I was so livid after what happened, that I had to pull over on the drive home to cry. I wrote a post on Facebook about it and posted the vote count and how there was laughing during and after the vote. Ironically, when I went to listen to the vote again and much of the video has been muted between votes as well as after the vote failed. You can watch that video here.
Just a few days later, I was asked to go on WHO Radio on the Simon Conway Show to talk about what happened that day in the Gallery. I was asked to come on after House Speaker Linda Upmeyer Upmeyer and share what happened in the Gallery that day. Of course, the House Speaker denied that anyone was laughing but the people who were there, heard it loud and clear. You can hear that radio show by clicking here.
I'm thankful for the Representatives who truly care about their constituents. I'm thankful for the Representatives who speak the truth and who truly care about my son and my family even though they don't even "represent" my family in the House. I'm thankful that there are faces in the House of Representatives who actually care about Iowa's sick and suffering. We need more of those faces in the House, so please, this fall - VOTE ACCORDINGLY!
As a parent who has been advocating for medical cannabis both before and after we obtained a Cannabidiol Registration Card (the fluke identification card that decriminalizes me for possession of my son's medicine), I want to share what happened this year with Medical Cannabis, why it failed miserably and why I feel that the amendment (to an amendment) to a Controlled Substance Bill that expanded conditions - yet still did NOT ALLOW ACCESS IN IOWA is absolutely disgustingly wrong.
I sat in the House Gallery not once, but twice as Medical Cannabis came to the House Floor. The first time, I thought I was going to hear a debate on a Democratic amendment (because our original Bill for this year was stalled and killed in the Ways and Means committee by House Leadership) that would allow for expansion of qualifying conditions and would have allowed ACCESS IN IOWA - which is what every parent and patient have been asking for and advocating on behalf of for YEARS.
I sat in the Gallery in the last week of the session to learn that the Democratic Amendment was pulled by House Leadership and instead we heard a debate on Medical Cannabis that stunned those sitting in the Gallery hoping to have access to medicine for their children, their loved ones or for themselves.
What transpired was nothing short of being absolutely blindsided by a garbage truck. The Representatives who had countlessly told us they supported medical cannabis instead told us that we needed to go somewhere else. For the "source" of medical cannabis in the amendment was a direction to obtain it out-of-state. Democratic Representatives from across the state stood up on behalf of their Constituents explaining that this bill would fail those in their district and shared those facts as reason for voting against an amendment that would once again send sick and suffering Iowans out-of-state to get their medicine.
Note - My own Representative of Dallas County - Representative Watts- who had touted voting YES in the Commerce Committee and even went on a radio show stating that my son's story had changed his mind on medical cannabis DID NOT stand up on behalf of my son who cannot speak for himself - and in the end back tracked and told me that "With the possibility of Epidilex (sp?) being available later this year or in 2017 I think it is advisable to delay rushing headlong into growing and processing of oil in Iowa. As you know, many of the advocates don’t want to stop with the oil and will push for full blown marijuana. I think there is ample evidence that is not in the best interest of all Iowans." - but I will save that for another post entirely.)
When it was brought up to Representative Nunn (who brought this amendment to the floor) that this would be forcing families to risk Federal Prosecution he just proclaimed that we were already breaking Federal Law. However, the DEA has stated it will not go after medical cannabis users as long as we keep what we are doing for our children or ourselves within our own state's borders. Crossing state lines however, according to the DEA's website would be considered federal drug trafficking and could land an Iowan in prison for up to 5 years and up to $250,000 in fines. To continue to say to Iowans "We have sympathy for you and your loved ones BUT not enough to guarantee your medicine or your safety." goes against everything I thought were Iowa values - to care for your neighbors and your friends as you would yourself.
I sat in that Gallery as we were told that if the bill were to pass, we would have "immediate access" or that people with Cancer could have their medicine "tomorrow" or that we can just "get it through the mail". Except - the products that are legal hemp vs the products that people with Cancer and Auto-Immune Diseases NEED - CANNOT go through the mail, period. People with terminal illnesses will NOT get the medicine they need in another state without a Medical Cannabis Card and Residency IN THAT STATE so by touting that the "Republicans Voted for Medical Cannabis" is BEYOND WRONG but hey, for the uninformed Iowan - it sure sounds good, right?
In that Gallery, we were told we would have "immediate access" to oils in MN as soon as the bill was written into law. I think perhaps that our Republican lawmakers need to look up the definition to the words "immediate" and "access" and see that neither actually mean hurry up and wait and spend one weekend a month traveling out-of-state to get help. Ironically, just two days after the debate, the Governor of MN came forward stating he was relieved it did not pass and that it would put Iowans crossing state lines at risk for Federal Prosecution. How is it that the Governor of Minnesota has more concern over the legal issues of Iowans than our own Governor and our own House of Representatives?
As a parent who cannot work due to the fact that my child requires 24-7 care and we are living on one income, we cannot continue to risk Federal Prosecution just because our Republican House Members "sympathize" enough that they will let us possess it yet, they do not want to grant us access within our own state. Iowa is a huge agriculture state. We have a huge water quality issue. Our Governor wanted to strip our schools of money to fix our water. Do you know what could easily fund and fix both issues? Medical Cannabis.
My family cannot afford to take time off of work to drive our child North (or West) to continuously get help in other states and risk serious prison time by bringing our child's medicine home. We cannot simply "go back to Colorado" as Rep Fisher told a friend of mine, as well. If my husband lost his job, we would lose everything. We all know that trying to find employment as a Felon would make things even worse. We have already had to sell our home, sell our second vehicle and move into my mother's home to get the much needed help we required in raising a child with serious special needs outside of his seizures. Yet, our lawmakers don't think families like mine have given up enough yet.
Again, to say that the folks with Iowa's short list of "qualifying conditions" would have immediate access to medical cannabis is a mistruth at best. Just to follow Iowa Law - they would first have to find a physician who is willing to support it, sign for it, and put the application through the Iowa Department of Health before even attempting to go out-of-state. The entire application/approval for our Cannabidiol Registration Card took SEVEN MONTHS between the time a physician told us we needed cannabis to when we had the card in our hand.
I'm curious if the Iowa House Republicans even noticed that the MN law allows for possession of only 30 days worth of oils? Do they truly expect sick Iowans and parents of sick children to drive to another state one weekend a month? Who can afford that? Were they expecting Iowans to pay the fee to get our Cannabidiol Registration Card plus the $200 fee required by MN to obtain their medical cannabis card (if that were even allowed to take place)? Was MN willing to change their qualifying conditions to match ours or vice versa? Did they realize that MN Physicians must be certified with the Minnesota Department of Health before they can even certify patients? Are Iowa's Physicians willing to certify themselves in Minnesota's Medical Cannabis registry, just so they can send their patients somewhere else for help? Do our Iowa House Republicans even care that courtesy of Medicaid Privatization, families like mine can't even go to Mayo Clinic in Rochester, MN for assistance anymore?
Iowa needs to help Iowans, plain and simple. We should not have to rely on our neighboring states to do for us what our own government should be doing. In 2014, lawmakers felt that children like mine should be able to possess this medication. I hope that by 2017, lawmakers will allow us access in our state.
Time is precious for sick people. Iowa House Republicans have continued to fail Iowa's most medically complex individuals. Our loved ones are not to be played as pawns in some sick political stunt. Those who are living in this nightmare WILL remember in November and the only thing families like mine can do now - is to make sure our story is heard loud and clear. We need to FLIP THE HOUSE.
I had the honor of being able to share Abe's story and a little about what went on in Iowa during the last legislative session.
You can listen HERE.
Our family was honored to have the opportunity to tell Abram's story to our local NBC Affiliate, Channel 13 news! You can watch it online and read more about it here. The Reporter, Stephanie Moore spent several hours watching Abram at his therapy and in the comfort of his own home and she did a wonderful job capturing the depth, desperation and happiness of his story.
The text of this story from Channel 13 News is as follows:
DALLAS CENTER, Iowa — Abram Miller, 3, started suffering seizures when he was just a baby. At first, they were mild but increased in frequency and severity.
“Right before his first birthday, he started having spells, where he would be just fine then all of a sudden just not be home at all. Things started getting worse, the seizures started happening more often,” said Erin Miller, Abram's mother.
Eventually, doctors diagnosed Abram with a rare seizure disorder and prescribed him medication that has never been tested on anyone under the age of 18.
“In Christmas of 2014, he could say 'mama, papa, cat, up.' And after that drug, it was just gone, and he worked really hard to get those words. So for him to lose them was really sad," Erin said.
It wasn't just his words — Abram lost the ability to walk and even had trouble crawling.
Out of hope and options, the neurologist pulled Erin into a side room and suggested the family go to Colorado to try cannabis oil.
“I didn't really have anything to lose. If it didn't work, it didn't work but it worked and it changed his life," she said.
The results are remarkable. Abram has spent the last year seizure-free. He went from taking 14 syringes full of prescription medication to just one. Soon, Miller hopes to wean her son off the last prescription and have him strictly on cannabis oil.
“I feel like I finally get to see my little boy live a life. Before, he was so miserable and suffering all the time," Erin said.
Cannabis oil has allowed Abram to regain his fine motor skills, his mother said. He’s also back on his feet, walking and playing.
“Before, they told us he wouldn't have the cognitive ability to do any of these things and he's proven so many people wrong. That's what's important because this medicine is life-changing for so many people, and it changed my little boy’s life.”"
Hello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis.
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