Wisconsin patients waiting for seizure drug

File photo.
File photo.

MADISON, Wis. (AP) – Wisconsin epilepsy patients are still waiting for doctors to give them a marijuana-based anti-seizure drug, two months after Republican Gov. Scott Walker signed a bill allowing the drug’s use.

Federal law prohibits the use or possession of cannabidiol, an extract derived from marijuana that’s also known as CBD. Parents of children suffering from seizures believe the drug could help alleviate their suffering. Federal officials haven’t approved the drug’s use, but eight states including Wisconsin have passed legislation allowing doctors to dispense the drugs under certain conditions since January, according to the National Conference of State Legislatures. The U.S. Department of Justice has said it won’t challenge the laws if they’re followed.

In Wisconsin, doctors can hand out CBD if they get permission from the FDA to use it as part of a clinical trial. But it doesn’t appear that any have started such a trial. Seven-year-old Lydia Schaeffer, the girl the law was named after, died waiting for the medicine last month.

“This law has been named after my daughter but it’s not going to go anywhere,” said Lydia’s mother, Sally Schaeffer. “We’re locked up. (The clinical trial requirement) puts everybody between this rock and a hard place.”

Wisconsin Medical Society officials say they haven’t heard of any such trials here and state regulatory officials say no doctors have approached them for help with a trial application.

Toni Morrissey, a spokeswoman for American Family Children’s Hospital in Madison, said the hospital would support any researchers to try to start a trial but no one has attempted to begin the application process. She said she did not know why. Gerry Steele, a spokeswoman for Children’s Hospital of Wisconsin, said in an email to The Associated Press that the hospital is worried about whether the drug has unsafe side effects, if doctors should limit prescribed amounts and how the drug is manufactured.

Jerry Halverson, a psychiatrist who doubles as president-elect of the Wisconsin Medical Society, said doctors are wary about working with a largely unproven drug and potentially risking criminal charges.

“The law just kind of jumped the science,” Halverson said. “I don’t really see the industry doing much to get into this field. Medications that are this highly regulated, doctors will use them with great hesitation.”

Rep. Robb Kahl, D-Monona, introduced the bill in February. In a rare showing of bipartisanship, majority Republicans passed the proposal and Walker signed it into law in April, saying he didn’t believe the measure legalized marijuana.

Sally Schaeffer said Lydia suffered from night seizures. She and her husband, Tom, pushed for the bill and attended Walker’s signing ceremony. They were hoping she would receive CBD when Lydia’s father found her dead in their Burlington home on Mother’s Day morning. They believe she died of a seizure.

Walker named the law after Lydia on May 20, but it’s of little solace, Sally Schaeffer said. The lack of clinical trials has dashed hope for parents like her, she said. She has vowed to push Wisconsin’s congressional delegation to legalize the drug outright.

“(Lydia is) gone and there’s other parents who are scared to death the same thing is going to happen to their child,” she said.

Kahl said he had to add the clinical trial caveat to ensure Senate passage, win the Medical Society’s support and allow the drug to enter Wisconsin. He said he wasn’t sure what changes legislators could make to the law when they return to Madison in January; if they eliminated the trial option doctors would have no legal way to bring the drug into Wisconsin.

He called for patience, noting the law is just two months old and many doctors probably don’t know about it.

“This law is in its infancy,” Kahl said. “There’s got to be a doctor or a clinic out there that’s willing to do this.”

blog comments powered by Disqus