I usually refrain from getting political in my writing, but let’s face it, I’m a young woman and I have developed my own beliefs and principles. I am not going to refuse to talk about issues that I care about because they could hint at my political allegiances. In fact, I believe that as a millennial — and a millennial woman in particular, it is important that I refuse to be silenced.
Governor Rauner vetoed a bill that would expand access to medical marijuana to eight more conditions. Ehlers-Danlos Syndrome was one of the eight conditions that a distinguished medical advisory board recommended adding to the medical marijuana program in Illinois. With this veto, he essentially took away my ability to access a treatment that my care team believes would greatly help me. He said it would be “premature” to add these conditions to the list.
For almost a year, I’ve attempted to contact his office and set up a meeting. When my letters were met with silence or form responses, I took to social media. No response.
Today, I had the opportunity to talk with him at a Q&A at my school. I told him of how I was diagnosed with EDS at the age of thirteen and that through the years I have developed various serious or life-threatening comorbidities. I spoke of how the medical marijuana program is flawed and complicated, but we should use this as initiative to improve the program, not to deny patients the right to a treatment that could help them. I spoke up about how I believe that the true premature thing is having pediatrics addicted to opiates before they reach adulthood.
Finally, I asked what his reservations are and what the medical basis was for his veto.
I was met with an apology that I’m ill and an explanation that consisted of talking in circles and having the Governor tell me that he would prefer that we “walk before we run.”
I appreciate the words “I’m sorry,” I really do, but sometimes apologies come in the form of explanation and/or legislative action. I advocate for other children and young adults living with serious illness for this reason. I’d like to fight for quality of life until my own body gives out. I find his quest to be a public servant admirable, and I give him tremendous credit for all of the work he is doing, but in terms of issues that impact the quality of life of seriously ill individuals, we have no time to walk. Each passing day can come with a decrease in function and no option to control pain and symptoms besides for highly addictive narcotics. In the case of pediatrics and young adults, there is little time to wait. We want better alternatives and we want them soon.
Governor Rauner can continue to walk, but when it comes to medical treatment and advancements, I choose to run.