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! |
About MeHello! 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 ENTRYJOIN US
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