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."
Last Friday, my family along with another Iowa family had the great opportunity to meet with US Senator Charles Grassley. The Senator was gracious and allowed us twenty minutes to discuss with him the obstacles our children have faced in regards to their medical history, lack of seizure control before CBD and to discuss the Compassionate Access, Research Expansion, and Respect States Act of 2015, also known as the CARERS Act.
Many people in Iowa don't quite understand the gravity of the matter when it comes to US Senator Grassley's involvement in medical cannabis. To our family, not only is Senator Grassley an Iowan, he also sits as Chairman of the Committee on the Judiciary and holds the key to families like mine gaining legality at the Federal Level. Without Senator Grassley allowing the CARERS Act to a vote in the Senate, families like ours will continue to fear being prosecuted at the Federal Level regardless of our state's laws.
Senator Grassley was kind enough to get down to the details on the CARERS Act right away. He shared many of his concerns with this bill including the worry that by allowing each state the right to create their own marijuana laws, that the United States would inevitably end up with 50 different marijuana laws. The Senator feels that it is important for marijuana laws to have uniformity regardless of the fact that 23 states already have legalized some form of marijuana. Senator Grassley also shared his concern that smoking marijuana is not supported by medical research. However, the type of medicine we use for our children comes in an oil form and is taken sublingually. The Senator also discussed that he did not care for the banking section of the CARERS Act at all. When I asked if that part of the bill could be discussed and changed if it were allowed to go to vote in the Senate, he said that it could. So as a parent, I am having a hard time fathoming why the CARERS Act is not being allowed to be sent to the Senate for a vote when the items that the Committee on the Judiciary find concerning would actually be up for discussion at that point.
As we chatted, our families talked to Senator Grassley about the side effects our children have faced due to pharmaceutical drugs. Abram's quality of life seriously diminished after he was prescribed Clonazepam, a benzodiazepine. I shared with the Senator that according to the FDA, there is no clinical trial experience with Clonazepam in patients under 18, that 30% of the trial patients had nervous system damage resulting in Ataxia, and that the adverse side effects on mental development could not become apparent until many years later.
At that point, I presented the Senator with a little informational brochure. The imagery shows the regression of my son on too much benzodiazepine and the progression he made with the addition of the CBD. You can see in Abram's eyes that his life was improving. While looking at this image the Senator's eyes widened and he said: "You really CAN see a difference, can't you?"
In addition to the FDA's trials on the particular drugs that reeked havoc on Abram's health, I also brought along the patent held by the United States Department of Health and Human Services that proves that Cannabinoids are safe and non-toxic up to 700mg. Abram only needs a small .10mg dose twice daily to have 100% freedom from physical seizures. I asked Senator Grassley why marijuana was still on the list of Schedule I Drugs when their Patent 6630507 proves marijuana in fact does have medicinal value but I did not get an answer.
Senator Grassley just reiterated that there is a lot of movement towards medical marijuana and that research on CBD is not on federal barriers. He reminded us that he and Senator Feinstein wrote letters to the Department of Justice and the Department of Health and Human Services asking them to classify CBD separately from the whole marijuana plant. He also reminded us that the federal government also removed the Public Health Review process that marijuana researchers had to undergo, a move that has allowed marijuana to be studied under the same amount of restrictions as other Schedule I drugs. To give credit where credit is due, Senator Grassley has taken a few steps in the right direction but we need more action from him and our federal government and passing the CARERS Act to the Senate for a vote would be a great step.
I tried to explain that CBD has been great for us and although Abram is seizure-free right now, the reality is that with our son's rare UBE2A gene mutation, the need for stronger medicine will most likely be a reality. (People often mistake Abram not having seizures right now as Abram being "cured" and that he'll never have a seizure again. This thought is foolish and I must clarify that regardless of AEDs and CBD, our son's brain is permanently injured, he has a neuronal migration disorder, already has atrophy in his hippocampus and his brain still fires irregularly all the time during the day and during the night. CBD has managed to keep those electrical shocks from manifesting into physical seizures but make no mistake - free of physical seizures does not mean free of abnormal brain activity.)
I tried to explain to the Senator that Abram is doing well right now but as he grows the need for a stronger CBD/THC ratio may become a reality sooner than later and that if/when that need arises I will have to break both state and federal laws to do just that if laws stay the way that they are. I intend to fight for Abram's right to that medicine now in hopes that when he needs it; I won't have to continue to worry about being a Felon by doing so.
While CBD doesn't help everyone, it does have the power to save lives. CBD has changed my son's life and it has changed the lives of many children that I know and love. I tried showing Senator Grassley as an example that if CBD helped just 10% of the 50,000 Americans that die each year due to seizures, that he himself would be responsible for saving at least 5,000 epileptic lives each year. Senator Grassley seemed a little exasperated at that number and asked why they would continue to push for these laws when "only" 5,000 lives would be saved. That statement took me off guard for several reasons because sitting right before him were two families and two boys whose lives had been changed immensely by CBD. Our sons' lives would be counted amongst those 5,000 lives. Yet, I couldn't help but to wonder what number of lives the Senator would deem worth saving. I would hope that ONE LIFE would be worth fighting for. While I bit my tongue, the other family spoke up and reminded him that that number was only meant as a representation of the epileptic lives he could save each year and that it didn't even include the impact he could have on the other people who suffer from different debilitating diseases and disorders.
Luckily, his exasperation at theoretically "only" saving 5,000 epileptic lives annually made a good point as to why we need broader medical cannabis laws. CBD has changed my life, my son's life and the lives of the family who sat along side us in the meeting with Senator Grassley. Our children are proof of the success that children with seizure disorders can have on CBD. Even the Senator himself could see how CBD has changed the life of my son just by looking at the photos I had given him. Our children are a testament to how well CBD can work.
However, CBD doesn't work for everyone and I refuse to fight for just part of a plant when my friend's children are still suffering. I also refuse to stop at CBD only because I myself may find that Abram needs something more as he grows and as his brain develops. Abram's gene mutation is rare and the only other family worldwide known to have this specific gene mutation lost a child at 11 to a seizure. I want to ensure that my son has legal access to whatever he may need - whenever he may need it.
Alas, our time quickly ran out and after taking our photos with the Senator we went our separate ways. Many thanks to Senator Grassley for taking the time to meet with our families to discuss how CBD has changed our lives and to try to understand how important broader medical cannabis bills are to families in situations similar to ours.
Cannabis is medicine. The government has already proven it. There are families being torn apart and lives being uprooted so people in situations similar to mine can give their child a chance at life. Please, take the time to write to your Senators, your Representatives and your Congressmen. Change needs to happen now and we need your help to stand up for what is right and speak for the little ones who don't have a voice. We are not criminals. We are parents just trying to do what is best for our loved ones, same as you.
Below is more of the "brochure" I made about Abram. Enjoy.
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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