A group of Grant county moms said a state law is preventing important research on marijuana oil from being done in Wisconsin, despite their efforts to make it happen here.
The state passed a law legalizing CBD oil earlier this year. But the law only allows the drug to be prescribed if the FDA issues an investigational permit to a doctor, who must undertake an effort to study the drug. Some families across the country said it is the only drug that has provided their children relief from constant and debilitating seizures.
The "Moms on a Mission" in Lancaster are parents of 13 children who have epilepsy in that small community of just more than 3,800. The group has held fundraisers for the last four years, raising thousands of dollars for epilepsy research. This year, they decided a $50,000 grant they funded could go toward research on CBD oil, in the hopes a trial could happen in Wisconsin.
"We raised the money and thought, 'We have the money, and now someone will want it and do it,'" said mom Nicole McLean. "Unfortunately, we're here now months later and nobody wants to do it."
McLean's son Evan is 9 years old and has lived with seizures since birth. She sayid he's been on just about every epilepsy medication, but nothing controls it.
"The only thing we have left is the CBD oil," said McLean. "That's the only thing we have left for him to live anywhere near a normal life."
The law, signed into law by the governor in April, has now been called "Lydia's Law," named after Lydia Schaeffer, a young girl who died of her seizures last May and whose parents fought for the law.
The Epilepsy Foundation Heart of Wisconsin said the law has not worked as intended, and parents have been calling the foundation frantic that they still don't have access to CBD oil.
"I think that was the intent of Lydia's Law, and it might be a disservice to call it Lydia's Law because it really turned into Murphy's Law," said Art Taggart with the Epilepsy Foundation. "It's not having the desired and intended effect for Wisconsin families."
Taggart said the grant has been posted for about a month, and the deadline was Friday. He believes it's unlikely any doctors in Wisconsin, although interested, will be awarded the measure because of how Wisconsin's law is worded.
"It makes it more difficult for researchers who are interested because they need waivers from the FDA and the FDA has no history of granting those kind of waivers," Taggart said. "It's complicated for medical professionals to participate, even if they want to."
The group of mothers is determined to get the oil studied.
"I believe if someone is brave enough to start this ball rolling, we will eventually get it here, hopefully," said Shonda Crapp, one of the organizers of Moms on a Mission.
The mothers know their grant is a "Hail Mary," but that doesn't mean they'll stop fighting.
"It's not worth quitting," McLean said. "We don't quit, we're mothers. We fight for our children every day."
Next year will be the moms fifth year of raising money for epilepsy research. They said they hope to have raised $250,000 in that amount of time for grants, and hope that CBD oil will be available more widely by then.