Parents: CBD oil access stymied by state doctors

Lydia's law legalizes seizure-reducing oil
Parents: CBD oil access stymied by state doctors
CBD oil

Parents are once again voicing concerns about getting access to marijuana oil to treat seizures in children, even after a bill was signed into law earlier this year.

The CBD oil bill, now known as “Lydia’s law” after 7-year-old Burlington girl Lydia Schaeffer who died recently, requires doctors to apply for an FDA permit to prescribe the oil said to reduce seizure activity.

Many parents who would like to try the oil say doctors at many major health care providers in the state won’t make the effort to prescribe it.

That includes for 18-year-old Haily Krause, of West Allis, who suffers from Lennox Gastaut Syndrome, which causes her to seize hundreds of times a day. Her mother Kari fought for the bill to legalize the use of CBD oil, but her hope for treatment faded with a phone call.

“I immediately got on the phone with her doctor and I said,’OK, so the CBD oil bill passed, what’s our next step?’ and he said ‘I’m not going to prescribe it,'” said Kari Krause, Haily’s mother. “I said, ‘What do we do if we want to try it?’ and he said ‘Well, I’m not going to prescribe it so go somewhere else.'”

She has, and hasn’t yet found someone willing to apply for the FDA investigational permit to prescribe the drug.

“What I’m hearing right now from doctors is it’s not FDA approved, it’s anecdotal, there’s no proof it’s going to do anything,” Krause said. “So we have to basically start over, and that’s exactly how it feels.”

The situation was the same for Michelle Schultz, of Sussex, who took her son out of Children’s Hospital of Wisconsin and to another state for treatment

“It’s ridiculous,” Schultz said. “We fought so hard to get it legalized, and now they’re making it even harder.”

Gov. Scott Walker said concerns about physicians not prescribing the oil was not raised before the bill’s signing. He addressed the issue with reporters after an event Wednesday.

“We want to find out what can be done,” Walker said. “I don’t know right now what the answer is, in terms of I don’t think at either children’s hospital we’d be forcing them to do that. Maybe as more attention goes to this there might be other alternative ways.”

But Krause said it’s hard for people to understand the urgency that every day with Haily’s smile could be her last.

“That’s why this is so crucial,” Krause said. “Because we want her with us, and all we want is a chance. That’s all we want, and we can’t get it.”

That fear of losing a child was magnified this month after the death of Schaeffer, who died in her sleep, likely of one of the seizures that ailed her. Schaeffer’s parents fought for the law to be passed.

So far, Children’s Hospital of Wisconsin in Milwaukee and American Family Children’s Hospital note that the oil is not FDA approved and don’t currently prescribe it.

News 3 was unable to get information from the state’s controlled substances board about any doctors who have contacted them about applying for the FDA permit.