OP-ED: At the age of 11, epilepsy seizures became a part of my everyday life.
My parents first noticed I was often staring off into space. After starting seizure medication, these simple partial seizures were significantly reduced. But a few years later in my early teens, as the seizures continued, I received the dreaded diagnosis from a neurologist: “Carrie, you have epilepsy.”
My life changed when I heard this and I decided it would be far easier to cope with having epilepsy in my life if I kept it hidden from all but close family and friends. I never wanted to be known as “Carrie with epilepsy.” For nearly 25 years, I kept this secret, until I began to work publicly for epilepsy awareness, most recently as President of the Board of the Danny Did Foundation.
There is a crisis facing families in the Illinois epilepsy community that has motivated me to speak out even more directly.
Families and patients watched with gratitude when Governor Pat Quinn signed the Compassionate Use of Medical Cannabis Act into law on July 20, 2014. This legislation added people with epilepsy, including children, to the list of patients served by the pilot program passed in 2013 and set to expire in 2017. I was at that bill signing and saw the relief on families’ faces knowing there was hope for their children.
Here is the problem: Since the bill was signed, there have been delays and obstacles that have slowed the application and licensing process, delaying access to medical cannabis. It is now likely that no one will be able to take this medication until the autumn of 2015. Two years is not enough time for the program to have a chance to really work before lawmakers decide whether to renew it.
But there is a solution on the table: State Rep. Lou Lang (D-Skokie) has proposed a bill to extend this pilot program four years from when the first dispensary opens and serves patients. Governor Bruce Rauner is opposed to this legislation and has threatened to veto it, even though we still have no data about the program’s successes or failures.
Families are now left wondering what they will do for their loved ones once this program ends. If they have received medication that stops seizures, will they have to end the treatment, and then watch their loved one suffer debilitating seizures, sometimes up to hundreds of seizures a day?
And it’s more urgent than simply wanting to live better.
Patients don’t have the luxury of time. All of our citizens with uncontrolled epilepsy are at increased risk of Sudden Unexpected Death from Epilepsy (SUDEP). If this program is not extended, it is not simply an inconvenience for thousands of Illinois residents, but a very real danger for these patients.
I urge Governor Bruce Rauner to reconsider supporting the extension of this pilot program. Rep. Lang has taken a common-sense approach that will allow us to evaluate this program while providing Illinoisans the chance to treat their debilitating conditions.
I have lived with epilepsy for most of my life. I know what it is like to experience horrible side effects like exhaustion from medication, and I know far too many families in the epilepsy community who are desperate to find an option to stop seizures. Medical cannabis may help them achieve what we all want for our loved ones: to live a normal life.
Why take this option away from families before it can even be allowed to work?
Carrie McAteer, President of the Board, Danny Did Foundation
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