By Leah Corcoran
This July, after years of hoping, waiting, campaigning, and jumping through innumerable bureaucratic hoops, my daughter Sarah had her first dose of legal medical marijuana, administered as an oil suspension through her G-tube. This medicine has changed Sarah’s life more than we could ever have hoped for. Now, instead of suffering daily seizures, sometimes as many as five, Sarah has long stretches of seizure-free days. After so many years it’s hard to believe, but seizures have become the exception in the course of Sarah’s days, not the norm, and her quality of life continues to improve immensely as the seizures recede.
Sarah is my 25-year old daughter who lives at home with us because of the devastating seizure disorder which has left her completely dependent on others for her care. Sarah was born a normal, healthy infant, but began having seizures at the age of three months. At one time, Sarah talked and walked and had the ability to make choices for herself. Now, at age 25, Sarah is completely dependent on us and on her PCAs for all of her needs, is non-verbal, and has severely limited strength and mobility. For the past five years, Sarah has been mostly confined to a wheelchair. Her entire life life has been defined by seizures.
Until now, that is. Now, taking a 20:1 CBD:THC solution twice a day, Sarah experiences many seizure free days at a time, most recently, a 13-day stretch! She has much more awareness, as if she’s “waking up” after so many years of seizure-induced sedation. Sarah’s sleeping and eating better, her mobility, strength and balance are improving, and she has renewed interest in activities she had long ago stopped doing, such as looking at books and playing notes on her xylophone. Our old Sarah is returning!
For 25 years, we’ve searched desperately for something to help stop Sarah’s seizures. When the Charlotte’s Web story started making headlines, our family and all of our friends wrote to our legislators, pleading with them to legalize medical marijuana.
Then, when the law finally passed in our state, we spent a full year jumping through bureaucratic hoops to get Sarah enrolled in the Minnesota Medical Cannabis Program, the strictest and most limited medical marijuana program in the country.
We are extremely encouraged by Sarah’s response to this treatment but at the same time, we are dismayed by what is quickly becoming a financial crisis for our family. Because the oil Sarah takes is not an FDA-approved medication, no insurance covers the cost. Sarah’s last 30-day supply cost us nearly $ 500 out of pocket. Added to all the other expenses associated with Sarah’s care, this is a substantial burden. There are only eight locations in Minnesota where the drug can be dispensed. The closest to us is two and a half hours away, and only a 30-day supply can be dispensed at a time, requiring us to make this expensive trip every month. Additionally, only cash is accepted, no checks or credit cards. We are committed to continuing to advocate for marijuana policy change, but in the meantime, we are faced with a difficult financial situation.
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