Raegen Arnold, 13, of Pleasant Prairie, was among the children who circled Gov. Scott Walker Monday to witness him sign legislation into law to add cannabidiol oil to the list of options available to treat medical conditions.
For Raegen, who has battled with epilepsy since she was 2 years old, CBD oil could help calm the seizures for which she is taking three prescription medications.
State Sens. Bob Wirch, D-Somers, and Van Wanggaard, R-Racine, were among the legislators who introduced Senate Bill 10, a trailer to “Lydia’s Law,” named in honor of the late Lydia Schaeffer of Burlington, who suffered from seizures due to Kleefstra syndrome. Lydia’s mother Sally Schaeffer led the charge to lobby for its passage.
Walker signed Lydia’s Law in 2014. But, because the CBD oil was illegal under federal law, doctor’s could not prescribe it without a waiver. Lydia died at age 7, less than a month after the law bearing her name was signed, having never received the treatment.
Walker said under the law signed Tuesday, patients can legally possess and use CBD oil with a doctor’s certification.
“The legislation didn’t work the way it was intended to,” Walker said at the public signing event at Veterans Terrace in Burlington.
Walker credited families like the Schaeffers and the Arnolds for sharing their stories and for being “compelling and decent, but persistent” in asking legislators for help.
‘More work to be done’
Sally Schaeffer said Tuesday she was pleased the law acknowledges CBD oil as an option for medical uses beyond seizures. She said it is a step in the right direction.
However, it is still illegal to transport it across state lines, and you cannot get it in Wisconsin.
“This is not an end-all, be-all. There is more work to be done in the state of Wisconsin,” she said. “You can now use it without worry. But you can’t produce it or cultivate it here.”
Wanggaard agreed the law does not address the illegal act of getting the CBD oil into the state.
For the Arnolds, it allows the family to explore CBD oil as an option without fear.
“We have been waiting for this for a long time,” Raegen’s mother Rebecca Arnold said. “We really couldn’t even talk to our doctors about it before.”
While Raegen is “stable” at the moment, the medication she is taking could stop working at any time.
“We’ve tried 13 different pharmaceutical medications over the last 10 years,” Rebecca said, adding what works initially doesn’t work long term. “Those medications also come with a whole host of side effects.”
Raegen, who attends Mahone Middle School, had a portion of her right frontal lobe removed in 2010 and was seizure-free for eight months. Another brain surgery is not the family’s preferred option.
Rebecca said this gives them hope there may be another alternative.