My opinion piece got published in the Des Moines Register today. I am beyond elated that it got such a huge piece of the Sunday paper. What an honor. You can read it on their website here or in the text below.
"Imagine having a child with a diagnosis so rare that genetic researchers in three states ask your family to participate in medical research because they are officially learning from your child. Imagine having a child with neurological storms that no one caught until permanent brain damage had already been done. Imagine having a child so sick that the doctors you trusted come to your child’s hospital bed and tell you that they don’t know how to help you and have to send you elsewhere for help. Imagine being pulled into a private room and being encouraged to try cannabidiol. Imagine being so desperate to help your child and worrying if doing what is best for your child will make you a “criminal.”
When you have a sick child, you find yourself in a battle to find the right team of specialists that can best manage their particularly rare set of circumstances. We never imagined we would have to fight for our child’s legal right to have his medicine. Especially when the recommendation came from his neurologist. Our situation in Iowa is hypocritical and cruel at best.
My zip code should not dictate what medicines my child can access, nor should it dictate which representatives respond to our needs. My family should not have to concern themselves with breaking federal law to get a medicine that Iowa law says we deserve. Yet, many of our legislators continue to block access to cannabis oil.
It is insulting to sit in a public hearing and listen to the testimony from Drug-Free Iowa, who worries more about the potential abuse of teenagers on a cannabis oil (which doesn’t even have enough THC in it to get a toddler "high"). Yet, my son is prescribed a benzodiazepine that is one of our country's most abused and deadly prescription drugs.
I can go to my pharmacy to obtain benzodiazepine, an “FDA-approved drug,” which was prescribed to my child off-label. My son was given a drug that has never been approved for children. According to the FDA, benzodiazepine’s “adverse side effects on mental development may not become apparent until many years later.” Yet, I cannot legally obtain a natural organic substance patented and proven to work by the U.S. Department of Health and Human Services (Patent 6630507), which has no side effects and is nontoxic in high doses.
The hypocrisy that lies in all of this is astounding. I’m a mom doing what my son’sspecialists told us was best for our child. Iowa's lawmakers have no place standing between patient-doctor relationships.
I am not afraid of medical cannabis. I don’t have to worry about detrimental side effects, unless you count my son as being 243 days seizure free a “harmful side effect.” Cannabis has given my son a quality of life he has never known. He is learning how to ride a trike, do puzzles, he can walk and run and he is learning how to communicate.
Cannabis has given my son the gift of finally being able to be a little boy at 3 ½, after a lifetime of suffering.
It has given my son and my family our lives back. It is time for our legislators to stand up and do the right thing.
Yet, the legislators who need to hear this are the ones refusing to come off of the House floor to speak with or respond to emails. It is incredibly frustrating that those who are supposed to speak for us don’t even listen or respond to those they are elected to represent. Iowans need to take note of who is telling their fellow sick and suffering neighbors “no” and vote accordingly this election season."
Imagine if your loved one's health care was in the hands of politicians and how it must feel to be at the mercy of people who don't know you, your family, your story or the suffering that the people you love most have to endure on a daily basis. Imagine how incredibly hard it is to have to turn to the government to beg for a law to help your child, partner or parent because you have run out of options and don't know what else you can possibly to do change their lives. Our role and place in the saga that was "funnel" week was just that.
(You can watch a very small portion of the news clip featuring my testimony on Channel 13 News, here: http://whotv.com/2016/02/17/naysayers-say-iowans-should-be-cautious-of-cannabis-oil-bill although I feel that THIS video portrays the needs of our Iowans much better: http://whotv.com/2016/02/17/lawmakers-revise-cannabis-oil-bill-hear-iowans-emotional-testimony/)
I have written hundreds of emails to every single Iowa House member starting last summer because I knew that there would be a bill (hopefully) coming into the house and I knew that I needed to start sharing our story even though they were out of session. I can count on my hand the number of Representatives who have ever responded to even one of them.
The beginning of the sub-committee and the hearing started with a statement that our bill had been "struck" and that many of the debilitating diseases and conditions had already been removed and that the number of dispensaries had been cut from twelve to two. This was heartbreaking news. Many of us cried. Everyone should deserve access to this medicine. If our doctors believe that this medicine would help our loved ones, it is the doctors who should decide upon that - not politicians! Alas, we continued on.
The next hour involved testimony from those "for" the medical cannabis in Iowa and I was brought to tears many times. Those whose stories touched me immensely were among the diseases that were cut from the bill. Our lawmakers had decided at some point that some people haven't suffered quite enough. I hadn't planned on speaking. I wish I had so I could have been more prepared but after hearing of all the NEED for this medicine I felt that these lawmakers needed to hear a story filled with HOPE and Abram's is just that. Why is it that my son gets to have his mother decriminalized to obtain to this medicine but my best friend from Kindergarten who has been an integral part of my childhood can not? She suffers daily from the rare disease Ehlers Danlos Syndrome and her condition was struck from the list. She wasn't able to attend to share her story because she was at home unable to get out of bed because she is pain ALL of the time.
It breaks my heart to sit through testimonies and hearing these gut wrenching stories and realizing that more than the majority of the people about to vote "yes" or "no" on this bill aren't even listening. The politicians that vote on bills that are LIFE-CHANGING rarely respond to e-mails and they don't come to the hearings to bare witness to the suffering of Iowans but they vote NO in a heart beat (and most likely because of their own political strategies and goals and much less likely because they actually care about the people who need it the most).
The people of Iowa need to understand that we need more voices. We need more action. We need YOUR HELP. Even after the bill made the news and even after an (open-to-the-public) hearing, I have heard many "What about me? What about my disease?" but I didn't see them at the Capitol. I haven't heard them voice their concern before. If I haven't heard them... I am guessing that our Legislators haven't either. We can't sit back and wait for this to happen FOR US. We have to FIGHT FOR IT.
That means YOU have to write to your Representative TODAY and tell them that YOU WANT THEIR SUPPORT for medical cannabis in Iowa. This bill is now moving to the Ways and Means Committee where the Chair of the Committee voted "NO" for this bill. This bill was voted through the Commerce Committee but there were 6 "NO" votes and three of those no's sit on the next committee as well. Many of them are hearing that we won't need this bill in a year when GW Pharmaceutical's "Epidiolex" is supposedly going to be on the market. That drug is helping several children that I know personally but it is also NOT helping many children that I know as well and that drug WILL NOT help the people with all of the other diseases that NEED OUR HELP.
So please - I beg you to get involved in this push for medical cannabis. So many of you have shown your support for me here but we need your help in real life fighting for medical cannabis on our town halls and forums.
Here is the Calendar of events for Legislative Forums. These are informal gatherings and are typically laid back. The one I went to last weekend only had 8 people but me showing up to that got us a "yes" vote on the floor this week and I do believe I have a new friend in my community, as we just had lunch today.
Find out who your Representative is (you can do that by clicking here) and write to them. Tell them why you support medical cannabis in Iowa. Share your story or our story or your best friend's mom's story. These folks need to realize that those who suffer are in their communities and we are voters. They need to know that if they don't vote for the people in the committees and on the House Floor they very may well be voted out.
FYI: The "NO" Votes for Medical Cannabis in the Commerce Committee were: Representatives Baltimore, Grassley, Holt, Landen, Pettengill and Sands. Representive Sands is the Chair of the Ways and Means Committee and he needs to hear from ALL OF US. Be kind. Be educated. Be proactive.
ONE VOICE CAN MAKE A DIFFERENCE. They may see us as weak when we each tell our story alone but when we stand together for something as important as those who suffer and those who don't have a voice we are STRONG.
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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