All We Need is a Signature...

What a month it has been since my last blog.  I am mentally, physically and emotionally exhausted.  We took a trip to Rochester to see a new Neurologist at the Mayo Clinic who we really liked.  We are very excited to have her join our medical team! Unfortunately illness has been running rampant around here.  Four of us had a respiratory infection, five of us had a horrible stomach flu and Lauren was hospitalized for the first time in six years due to seizures.  We are ready for some good health, some warm temperatures and sunshine!

I am sure you have heard the news that the Cannabidiol Act was passed early this morning by both the House and the Senate.  This was a great victory for Iowa as our law makers have stated that cannabis has medicinal value.  It is a great step in the right direction and I am so thankful for the majority of Senators and Representatives who took the time to be educated and make the right choice to allow this to happen.  There are many heroes at the Capitol  that fought very hard over the last few weeks to even make this a reality for us.  Senator Joe Bolkcom and Senator Charles Schneider were the heroes in the in the Senate.  Rep. Rob Taylor, Rep. Bob Kressig, Rep. John Forbes, Rep. Jared Klein and Rep. Clel Baudler scrambled and went up against many obstacles to get this done in the House.  For my Greenfield peeps, a huge thank you needs to go to Clel.  He was the biggest opponent in the beginning, as you know.  I was very upset with him at first at his unwillingness to open his mind.  But, he took time to educate himself on cannabidiol and to listen to us.  He will tell you that this is not medical marijuana, it is hemp oil and he wants to make that clear.  He wanted to do the right thing and he knew that this was it and the time to do it was now. He did it for the kids.  There is still one more hurdle we need to get over before we can truly celebrate a victory. Governor Branstad needs to sign it.  So, the battle has not been won quite yet.

This bill, although a great victory for Iowa, is a very limited bill and they are not making it easy for those of us who need it to get access to it.  There was an amendment added last night from House Majority Leader Linda Upmeyer that states that only a Neurologist who practices in Iowa can recommend cannabidiol.  Although Iowa does have some great Neurologists, those of us with such complicated children have to seek treatment from out of state doctors who are experts in treating intractable epilepsy.  A few moms who fought really hard and had great hope had that taken away from us last night with this amendment.  We do have a Neurologist in Ames who we have seen for a couple of years who has been our local contact.  During my conversation with him last Friday, he led me to believe that he is not willing to refer patients.  Many doctors are hung up on the fact that it is not FDA approved and they are afraid to recommend it because it is not.  He is one of them.  Although he is willing to prescribe our girls a seizure medication that is not FDA approved...  I don't have to agree with his thinking but, I have to respect it.  I will follow up with him again after the dust settles and IF the bill is signed by our Governor.  Another roadblock for us is that we have to travel to another state to purchase it.  This takes time and money. Cannabis oil is expensive in itself.   I have yet to find a family who have very medically fragile children and have both extra time and extra money.

Now I am not trying to be Debbie Downer here friends, I just want to be honest with you that although this is a HUGE victory for the state of Iowa, there is still a lot more work that needs to be done. Rep. Klein said it best when he said, "This isn't a perfect bill, but it is a good bill."  It gives families that have run out of options a chance to help improve their child's quality of life.  It shows compassion to those who need it the most.  Just getting our Dravet diagnosis, there is one, possibly two medications that we need to try that could possibly help our girls first.  I fought so hard for this because I want it to be an option for us when we do run out and I personally met people who have no options left and it breaks my heart. They need this now!  I also believe with all my heart that this medicine needs to be available to all people who suffer from other debilitating diseases.  No child/adult should have to suffer when there is medicine out there that has been proven to help just because it comes with a stigma.  It is my hope that in the next legislative session, a "perfect" bill can be written.  It is also my hope that with half of the United States having at least cannabis oil legislation and the majority a full medical cannabis program, the federal government will do what is right and reschedule cannabis.  Being a Schedule 1 substance, that means it has "no medicinal value."  That is wrong.
 
This whole experience has been an eye opening one for me and I have learned a lot.  I will be honest, I rarely pay attention to what is going on at the Capitol.  I will watch the news and that is about it.  Up until recently, I had only visited the Capitol on my kids' field trips.  I can tell you one thing... I could never be a politician and I could never be a professional lobbyist.  I met many great Senators and Representatives who really impressed me and I met some who really disappointed me.  I was blessed to meet two moms, Sally and Maria that were instrumental in getting this all to happen.  Sally and Maria live in the Des Moines area and they both have children with Dravet Syndrome. They didn't leave when the door was slammed in their face in February.  They continued to fight, urged us all to join with them and together with the help of our amazing children, we won over the House and the Senate.  I am grateful to call them friends and know that we can be there for each other as we all face the same beast in Dravet. I met many other moms and dads who have children with intractable epilepsy and hopefully will be able to continue to hear from them and continue friendships with them.

I am glad that I can put my dress clothes and uncomfortable shoes away and get back to giving my family 100% of me.  After emailing every Senator and Representative I will now need to spend time taking myself off of their newsletter lists that they put me on without my consent...  Some of them asked me to keep in touch with them.  I thought  that was very sweet.  Yesterday, Lauren and Lindsey were made "Honorary Senators" of the State of Iowa.  They were pinned and everything.  They were hugged, shook many hands and had their pictures taken many times in their two trips to the Capitol.  Little did they know, they were part of making history in Iowa.    

Thank you all for your support, kind words and prayers.  Yay for Cannabis Moms!