Burlington, News

Woman keeps up crusade for anti-seizure drug

Burlington resident Sally Schaeffer (left) speaks with Speaker of the House Paul Ryan in a recent meeting on CBD Oil legislation. (Photo submitted)
Burlington resident Sally Schaeffer (left) speaks with Speaker of the House Paul Ryan in a recent meeting on CBD Oil legislation. (Photo submitted)

By Jennifer Eisenbart

Editor

Burlington resident Sally Schaeffer has logged a lot of miles over the last week and a half.

Continuing to fight for the legalization of cannabadiol – or CBD Oil – as a treatment for seizure patients, Schaeffer has traveled to Washington, come back home, had knee surgery and then headed to Madison Tuesday to speak at a hearing in hopes of amending Wisconsin’s CBD oil law.

Needless to say, Schaeffer was looking forward to being home with her family for Thanksgiving.

“I’m going to be thankful for the holidays,” said Schaeffer. To sit back, and reflect and be with my family.”

Schaeffer is one of many parents battling nationwide to legalize the CBD oil as an alternative treatment for epilepsy, working with the Coalition for Access Now group that was founded by Paige Figi. Figi’s daughter, Charlotte, has the strain of CBD oil that is working to resolve her seizures (and those of others using the treatment) named after her – Charlotte’s Web.

Wisconsin legalized the treatment in April 2014, but a late addition to the law makes it virtually impossible for parents to get access to the medication here in spite of its legality.

The state law has a provision that requires that a Federal Drug Administration license – which essentially amounts to a drug trial and involves all the federal red tape that surrounds it – be obtained in order to have access to the drug.

In a cruel twist, Schaeffer’s daughter, Lydia – for whom Schaeffer was fighting to get the oil legalized – died on Mother’s Day of 2014, about a month after the bill was signed.

Since then, Schaeffer has continued to push forward, hoping to change the state law and get it approved on a federal scale.

There is movement on both fronts. With U.S. Speaker of the House Paul Ryan signing on as a co-sponsor, H.R. 1635 is being considered. Pennsylvania’s Scott Perry introduced the law earlier this year, and there are now 60 co-sponsors – including Wisconsin Rep. Jim Sensenbrenner, R-Menomonee Falls.

On the Wisconsin front, Schaeffer and a handful of other parents testified at a hearing Tuesday in front of state lawmakers, asking that Lydia’s Law be changed so that it will be legal for parents to have the oil.

The hope, Schaeffer said, is that parents who can then obtain the CBD oil through whatever means would not be prosecuted, then, for having it.

Schaeffer called Tuesday “emotional.”

“This is a law myself and so many parents worked hard to get passed and it doesn’t work,” Schaeffer said. “This is another chance to fix that mistake.

“It just hits so close to home because the fear we all had about losing our loved one when we were last fighting is now my reality,” she added.

Schaeffer said she has heard that the bill could go before the State Legislature for a vote as early as January.

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