Burlington mother, others prevail in crusade for medical marijuana

By Jennifer Eisenbart

Editor

For hundreds of Wisconsin families, the battle for an alternative to traditional seizure medication reached a satisfying conclusion Tuesday evening.

With a unanimous voice vote, the State Senate approved SB 685 – a bill that would legalize cannabidiol oil (CBD) as a treatment for seizure disorders.

The oil is derived from a low-THC content marijuana plant being specially bred and produced in Colorado. The treatment became widely publicized over the last six months as a child in Colorado – Charlotte Figi – saw significant and lasting relief from her almost non-stop seizures.

Burlington resident Sally Schaeffer, whose daughter, Lydia, suffers from Kleefstra Syndrome – a disorder that has the 6-year-old functioning with the mind of a 10-12 month old – took up the fight to get the CBD oil legalized in the state, along with other parents whose children were suffering.

However, with the campaign starting less than three months ago – and the Assembly and Senate expected to adjourn last week and this week, respectively – the timeline was so tight that many felt getting it through both houses of the legislature was unlikely.

Add in the opposition of Sen. Leah Vukmir, the chairwoman of the Senate’s Health and Family Services Committee, and it looked like a miracle would be needed.

“It did look like I needed a miracle, and some divine intervention,” said Schaeffer on Tuesday, following the bill’s passage. “I do believe that’s what got this where it is today.

“I broke down and sobbed afterward,” she added. “This means life or death for Lydia and so many other children.”

The first miracle happened last month, as Assembly Speaker Robin Vos, R-Rochester, pushed to get the bill on the Assembly floor for a vote. It passed by an overwhelming margin, but the bill was expected to get stalled in committee.

However, Schaeffer received word last week that Vukmir had allowed it out of committee, and it would go up for a vote Tuesday.

The vote was unanimous, but one senator was missing.

Schaeffer said she spoke with Vukmir after the session, and said the senator had offered her support after an amendment clarifying that those wanting the drug would have to apply for an FDA investigation license was added to the Assembly bill.

That means that the FDA would allow the drug to be transported and used without FDA approval.

“She was very explanatory,” Schaeffer said. “She was more explaining her position.”

Others were more emotional. Schaeffer said one senator came up to her and gave her a bear hug, and another called and offered her congratulations.

Vos said Tuesday evening that the parents who testified before legislators made an incredible impact.

“I think the fact that there was a strong network of parents all around the state, who told an incredibly compelling story, melted the opposition,” said Vos.

Vos said he felt many state legislators seemed to come down on the side of letting the parents make the decisions what’s best for their children.

“I think it’s one of those great examples, when people say government doesn’t work, that they can point back to this and say, ‘it sure does,’” he said. “It just shows that passionate people, working with elected officials who listen, can get things done.”

The bill will now go to Gov. Scott Walker. The governor has an almost unlimited amount of time to call the bill to his desk, Vos said, and then 10 days to sign it.

But the Assembly Speaker expected it to come to Walker in the next few weeks.

“I have talked to Gov. Walker about this topic in general,” Vos added. “It is my impression he will sign the bill.”

Schaeffer said she is already working with people in Colorado to put together procedures so doctors can get the drug and administer it. She also wants to work to get it listed as a Schedule I drug.

Schaeffer thanked all the legislators that worked to get the bill passed, including John Lehman – a co-sponsor on the bill – Vos, and Sen. Bob Wirch.

“It was great to see these parties come together and vote unanimously for this,” Schaeffer said. “I want to give them credit where credit is due.”

Lydia Schaeffer will turn 7 on April 19, and Schaeffer called it the best birthday present she could have asked for.

“What a gift for her,” she said.