Last month, we took part in an educational meet and greet for the “Florida Compassionate Medical Care Act of 2014” at our local library. The law authorizes physicians to order low THC cannabis for use by specified patients. The cannabis is converted into a medical hemp oil or cannabidiol (CBD) most popularly known as Charlotte’s Web. The resulting product has no psychoactive effect which is commonly associated with marijuana. It has shown to be extremely effective in reducing seizures.
Holley Moseley, the mom who worked tirelessly to help move the bill to passage in Florida, presented the status of the law and where it is in the process. For those who are new to the law, it was passed in July 2014 and is slated to take effect in January 2015. The law opens the door to bring a life saving option to children in Florida who have severe epilepsy causing intractable seizures. Unfortunately, the lottery system that will select nurseries in Florida to grow Charlotte’s Web is now being challenged in court. A handful of growers think the lottery system is illegal. From a business and safety perspective, I understand their concerns. Their issue focuses on making sure the product is the best it can be. But one has to wonder. Is it all about the money or bogging down the law in the courts to maintain the status quo?
For the parents of kids who desperately need Charlotte’s Web, it is about saving their children’s lives. Every family who came to the meeting is literally screaming for help. One mom stood up and as she described her desperation, began to cry. Her daughter has tried every antiepileptic medication. She has no other options. This amazing woman is also a single mom taking care of her child by herself. Why must we continue to make her daughter wait for a natural substance that has been shown to work with many other children?
I have seen tens of thousands of seizures since my daughter Livy was born in December of 2004. She has a generalized brain malformation which causes multifocal, partial epilepsy. But on the day of the meet and greet, I was shaken. Just after the meeting had finished and everyone was talking, one of the young girls in attendance suddenly fell to the ground and started convulsing. When Livy has seizures, she is either in her wheelchair or lying down. She has never fallen. It gave me an entirely new perspective on what other parents endure. One of the worst parts about it was the look in her mom’s eyes; a stern, self-protective look that said, “I have seen this so many times before. What can I do? I have nothing left to try.” It got me thinking. Do I look like that, too? Have I become so accustomed to seeing Livy have seizures that it is now normal? The fact that parents can become conditioned to watching their children seize day in and day out should be unfathomable. How can society, with all the compassion we profess to have because of our religious beliefs and the values we teach in our schools, think this is okay?
I am sure most people have seen ER or House or any other of the popular hospital shows over the years. When someone has a seizure, the doctors spring into action demanding, “Ativan, I need Ativan!”, a short term benzodiazepine used to slow the central nervous system which in turn, stops the seizure. Now imagine if your child is on three antiepileptic medications, has had multiple brain surgeries and has already experienced a dozen seizures that week or that day. And now imagine that occurring for a decade or more. There are no calls for Ativan. There are no CT scans to look for tumors or MRIs to identify an epileptic source. For six out of ten people with epilepsy, there is no known cause. One third of people with epilepsy live with uncontrolled seizures because there is no available treatment that works. Parents watch their children have daily seizures and are helpless to do anything about it. That is how we become hardened.
However, Charlotte’s Web is a real option. There is evidence that CBD has shown a reduction in many children who have tried it. We need more research. But many institutions are hampered by a national law that qualifies all types of hemp products as illegal. Therefore, even teaching universities, who are supposed to be educating the next generation of physicians and scientists, will not even attempt studies since many of them receive federal funding and could potentially lose it. There is also a national bill, H.R. 5226, the “Charlotte’s Web Medical Hemp Act of 2014”, that was introduced to the US House of Representatives in July of 2014. The bill would legalize CBD (cannabidiol) oil throughout the entire United States so the state by state laws slowly being enacted would have less relevance and make it much easier to bring this incredible option to the children and families that need it.
I wish, just for a day, those that continue to deny our children a potential alternative could step into my shoes. To get up every morning and draw out 5 syringes of pharmaceuticals (3 antiepileptic medications and two others to counteract the side effects) and then pump them into Livy in hopes that she will have fewer seizures than the day before. Then repeat it again at night and hope she is able to have a peaceful sleep. All the while knowing that the mediations she is taking have serious repercussions for her physical and mental development. I would like to see them visit an epilepsy monitoring unit in a hospital or a neurologist’s office or a hospice house. I would like just for a day, to have a detractor live the life of a parent who has no hope left for a cure. I wish that those with healthy children, who continue to deny access, could know what it feels like when every medication has been tried but the seizures persist.
There are many in the epilepsy community who are already beyond this point and have lost the battle. Children are literally dying because their fragile brains can no longer tolerate the seizures and because the medications have poisoned their delicate systems. I have watched Livy seize for 40 minutes at a time. I have seen her have more than 100 seizures per day. I have been witness during two major brain surgeries. One half of her brain was disconnected. But yet she still continues to have seizures. And you are telling me I cannot try to help her with a natural plant?
If the law gets bogged down in the courts, it could be many months before medical hemp becomes a reality in Florida. Why can’t the judge order mediation between the concerned parties to resolve their differences in a civil way that doesn’t put more children at risk? Why can’t the governor create medical exceptions and allow shipping Charlotte’s Web into the state to those on the waiting list until the judicial process has completed? We are supposed to be an educated, loving society. But it is cruel to let children and families suffer. Please think for a moment if is was your child. What would you do?