Lawmakers and the governor are moving to rename a law after the death of a little girl whose parents fought for the legalization of a form of marijuana oil to treat her.
Seven-year-old Lydia Schaeffer, of Burlington, was at the governor's bill signing for CBD oil with her family in April. Her parents Tom and Sally were tireless advocates for the measure, which they said could offer their daughter some relief from seizures that happened while she slept. Lydia died in her sleep on Sunday. Now lawmakers and the governor want to rename the measure "Lydia's Law."
"I'm so proud of my wife for what she's done for our family and other families in our shoes," Tom Schaeffer said. "We just want to help just one kid avoid this."
Bill author Rep. Robb Kahl, D-Monona, said the governor's office contacted his office to take steps on the naming, which he supports.
"We can sit there as elected officials and try to pat ourselves on the back and say we did a great job, but really the hard work here was done by these families and they were led by Sally and Tom," Kahl said.
Lydia's death is also drawing attention to the need to get the drug into the hands of families soon.
"It is a life-and-death situation," Kahl said. "This is such a sad situation with Lydia, and I think it does illuminate for people how sincere we were when we said we had to get this done and how significant a risk this is to these children's lives."
After our questions to the Department of Safety and Professional Services Wednesday, officials posted information on their website for doctors to begin applying to the FDA for an investigational drug permit to prescribe the drug.
State law requires any doctor who wants to treat a patient with the oil apply for the permit and if and when that's granted, the state controlled substances board will decide where they can get the drug. The bill authors admit this process could take months, but they hope it could be available to families by the fall. At this point the state said no doctors have contacted them about assistance with a permit.