We are parents of children with severe, intractable epilepsy. This means that our biggest fear is that our children will die before we find something that will stop them from having seizures every day. Collectively, our children have endured countless pharmaceuticals and brain surgeries, all in desperation to stop their seizures.
We are advocating for medical marijuana in Minnesota so that our children have the opportunity to safely access this viable treatment. In fact, two of our children have tried medical marijuana in an oral form in Colorado and Oregon and have seen great improvements in seizure control and quality of life.
To be clear, we are always in favor of and supportive of research, especially with a generous $2.2 million appropriation, as Gov. Mark Dayton suggested last week with his idea of funding Mayo Clinic trials of cannabis-based medications for children with severe forms of epilepsy, as well as a more comprehensive study of medical marijuana. But we aren’t in favor of his proposal because, as written, it would be ineffective for our children and for other suffering patients in Minnesota.
Recently we met with the governor’s staff. We were asked to review the proposal, and we voiced the following concerns:
1) There needs to be a viable source for medical marijuana to perform clinical trials.
2) The clinical trials focus only on epilepsy and exclude other patients in Minnesota who need medical marijuana.
We were assured that our input would be taken to help make this proposal work, and Dayton’s chief of staff led us to believe that the governor would consider an updated bill if it were to cross his desk.
However, given the governor’s recent statements incorrectly implying that we support this proposal as written and actually suggesting that we could buy marijuana off the street, it is clear that he is taking neither the issue nor the parents of vulnerable children seriously.
To ensure that the law helps our children and other patients in Minnesota, a well-regulated supply needs to be grown in our state. For most of the patients who need this medicine, time is of the essence. Unfortunately, research that requires involvement at a federal level (as outlined in this proposal) is not likely to happen soon. This is one of the reasons that nearly half of the states in this country have taken the matter into their own hands regarding medical marijuana.
If the governor’s research proposal passes in this form, it means that 7-year-old Greta will not be able to come home from Colorado, where she is receiving treatment. It means that other families with children who have medically complex situations, like 2-year-old Wyatt and 7-year-old Amelia, will have to travel to other states to try this medicine. If it works, they will need to move — and stay there, like 5-year-old Pax. It means that the children of families who cannot afford to move will suffer needlessly in Minnesota. It also means that countless other vulnerable patients who need medical marijuana — with cancer, AIDS, Crohn’s disease, muscular dystrophy, PTSD and glaucoma — will be excluded and forced to “buy it off the street.”
The way this research proposal is written constitutes an empty promise. It is heartbreaking that, on top of fighting for our children’s lives, we are being manipulated by our governor, who falsely states that our children will benefit from a proposal that will do nothing to help anyone in Minnesota.
We believe that research is tremendously important and that Minnesota could be a leader in this emerging frontier of medicine. To ensure that this happens, we support amending HF1818 to include the governor’s research proposal to address the concerns we note above. That way, a safe and well-regulated supply can exist in the state, the clinical trial can be performed and, at the same time, patients can access medical marijuana to relieve their symptoms in the near term.
The only way a medical marijuana bill will help children in Minnesota is if it is good enough to bring Greta home and keep Wyatt, Amelia and Pax in Minnesota.
Please bring Greta home.
Maria Botker, Greta’s mom, lives in Clinton, Minn. Jessica Hauser, Wyatt’s mom, lives in Woodbury. Angie Weaver, Amelia’s mom, lives in Hibbing. Angela Garin, Pax’s mom, lives in St. Paul.