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Wisconsin Patients Still Waiting For Marijuana Seizure Drug

Mon, 06/16/2014 - 3:12pm
TODD RICHMOND, Associated Press

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 cannibidiol, also known as CBD, and the U.S. Food and Drug Administration hasn't approved it. Since January, though, eight states, including Wisconsin, have passed legislation allowing doctors to dispense the drugs under certain conditions, 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 young 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. The Milwaukee Journal Sentinel reported Monday that neither the Children's Hospital of Wisconsin in Milwaukee nor American Family Children's Hospital in Madison will apply to begin such trials.

Neither hospital responded to messages left Monday by The Associated Press. 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, Republicans who control the Legislature passed the proposal unanimously and Walker signed it into law in April, saying then he was confident the law was very narrow and didn't amount to legalizing 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 her bed in their Burlington home on the 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 neutered the law and dashed hope for parents like her, she said. She has vowed to push Wisconsin's congressional delegation to legalize the drug outright.

"We don't need any more kids in this situation. She's gone and there's other parents who are scared to death the same thing is going to happen to their child."

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 bill when they return to Madison in January; if lawmakers eliminated the clinical trial path doctors would have no legal way to bring the drug into the state.

He urged seizure sufferers and their parents to have patience, noting the law has been in effect for only two months 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."

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