"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."