DES MOINES — Sally Gaer has spent two years pressing Iowa lawmakers to change state laws to allow for the treatment of epileptic seizures with cannabidiol, an oil extract of the marijuana plant.
Now, Gaer has joined a nationwide coalition that is making the same effort with federal lawmakers.
Gaer, a West Des Moines women whose daughter suffers from epilepsy, has joined a group of women meeting this week with members of Congress, including new U.S. House Speaker Paul Ryan, R-Wis.
The group is meeting with congressional members Monday and Tuesday in Washington, D.C., on behalf of the national advocacy group Coalition for Access Now. They are attempting to generate support for legislation already introduced in Congress that would allow people to access cannabidiol by removing it from the definition of marijuana.
“They’re all very receptive,” Gaer said. "They’re all willing to listen to the stories."
The bills being considered have 58 sponsors in the House and nine in the Senate, according to federal records online.
One of the House bill’s co-sponsors is Ryan, who recently took command if the chamber’s most powerful position. Gaer and the group were scheduled to meet with Ryan Monday afternoon.
The group also is scheduled to meet with Iowa’s two U.S. senators, Chuck Grassley and Joni Ernst.
Ernst’s office said she still is considering the bill. A spokesman for Grassley said because the bill essentially makes cannabidiol a dietary supplement not regulated by the federal Food and Drug Administration, Grassley “would likely not be in favor of it.”
Gaer and the many advocates like her want cannabidiol to be legal for use in treating epileptic seizures. Those who live in states with cannabidiol programs say the product is effective at reducing seizures.
One such testimony comes from Paige Figi, founder of Coalition for Access Now whose young daughter has a serious form of epilepsy. Figi, who lives in Colorado, where cannabidiol is legal, as is recreational marijuana use, said her daughter’s seizures have been “all but resolved.”
“She came out of a hospice, end-of-life situation, and now she’s at school, she can ride a bike,” Figi said. “She has been a huge success story.”
Sally Schaeffer does not have a success story. Her daughter Lydia died in her sleep at 7 years old. Lydia had a rare chromosome disorder as well as epilepsy and autism.
“I’m working with all of these mothers here in Washington, D.C., to share our story and our journey and to save other parents from having this kind of loss,” Schaeffer said.
Gaer’s efforts in Iowa in part led to a law that allows for possession of cannabidiol. But it does not allow for creation or distribution of the product in Iowa, and federal law prohibits the transfer of the drug across state lines.
Gaer continues to push for a broader law in Iowa and now is hoping for success at the federal level as well.
“I think there’s good, bipartisan support (for the federal legislation). I think at the end of the day, people really want to help those who are sick and suffering from epilepsy, especially children,” Gaer said. “Once the education piece is done, I think it can be done very quickly.”