Welcome to Parent Views. This is the first entry in an occasional series about medical cannabis in Texas, activism and the caregiver’s role in implementing CBD treatments, written by parent Terri Carriker, whose child has intractable epilepsy.
A good friend of mine calls herself an “accidental activist,” and while I’ve never thought of myself that way, I’ve come to identify with the term since it became obvious that medical cannabis was going to make a significant difference in my daughter Catherine’s life.
Catherine was diagnosed with intractable epilepsy when she was three-and-a-half years old. Until then, she had been developing like a typical child, but once the seizures started, we were never able to get control of them, and things progressively worsened. She lost the ability to use language; she lost cognitive and physical function. By 2011, she’d had the last of several brain surgeries that turned out to be more palliative than curative, and we realized that we had exhausted everything that traditional medicine had to offer her.
We were stuck waiting for a miracle.
A few years ago, I started getting video links from people about the Charlotte’s Web cannabis strain that’s high in the compound cannabidiol (CBD), and I was convinced that it could help. I cried for about a half-hour after watching the first video—at that point, I realized, oh my gosh, there really is something that might help Catherine. And then someone sent me Dr. Sanjay Gupta’s CNN documentary “Weed,” and it gave me more hope that we could someday get legislation that would allow it here in Texas.
Texas mom Terri Carriker, front right, and other parents of children with epilepsy joined together at the Texas Capitol on the day House lawmakers approved SB 339 on May 19, 2015. (Courtesy of Terri Carriker)
But then reality sank in: We wouldn’t soon have legal, medical cannabis-derived CBD available where we lived. I remember the sadness of that realization coming over me, and the weight of that harsh truth. My husband and I talked briefly about moving to Colorado or somewhere else where we could set up legal residence, but we have three other kids and my husband owns a business. We also realized that Catherine would have lost her medical coverage—she’s in a Texas-based program for medically dependent children.
All along, though, I had been part of several support and advocacy groups, and our discussions around this intensified. Finally, a group of friends and I knew that we had to start pushing, and pushing hard, for medical marijuana to be fully legal here in Texas.
I’ll never forget that day in 2015: A bunch of moms (and dads, too) sitting in the state legislature gallery in the Capitol, holding photos of our kids and hearing our names read aloud as we made our case for legal medical cannabis. That day led to the passage of Senate Bill 339 and created the Compassionate Use Act (CUA).
The CUA provided a foundation for new Texas policy, but it’s too narrow and restrictive to help many more who could benefit from medical cannabis. SB 339 allows for only three licensed dispensing organizations statewide, and these businesses are allowed to offer low-THC cannabis products only to patients diagnosed with intractable epilepsy.
Fast-forward to the next time the Texas Legislature was back in session—lawmakers meet every two years. In May 2017, an army of us parents returned to the Capitol and fought late into the night, sharing testimony for our kids, to try to get House Bill 2107 passed to expand the program to address medical cannabis use for other debilitating illnesses and allow for more dispensing organizations and testing facilities.
Even though the clock ran out that night and the bill wasn’t voted on, we’re in a better position for next time, and we learned so much.
In future posts, I’ll be sharing more about what I’ve experienced as a parent and advocate, as a caregiver and an activist. Thanks so much for reading!