Hope on hold: Wisconsin families hope new bill allows access to controversial treatment

Posted at 9:58 PM, Jan 17, 2017
and last updated 2017-01-17 23:28:19-05

It's a marijuana extract that can help stop seizures - but access to this oil has been tied up in the Wisconsin legislature for years. 

The I-Team got an exclusive look at a new bill that could mean the difference between life and death for some children.

We've been following this story for several years, and that's how long many families have put their hope on hold, waiting for lawmakers to pass a bill that will give them access to a potentially life-saving treatment.

Take the Arnolds in Pleasant Prairie.  Raegan is 12.  Her seizures started when she was just two. Over the years, she's been on 14 different seizure medications, most of them highly addictive and with horrible side effects. 

"Things from aggression to rage to liver damage," her mother Rebecca told us.  "Things that could ultimately affect her life as well, beyond just the seizures."

And at some point all the prescription drugs have failed.  Raegan's treatment even included removing part of her brain, but the seizures came back. "You have to look for other things that are out there to keep your child healthy and to maintain a good life for her," Rebecca explained.

That other option is CBD oil. A marijuana extract, it's known to calm seizures.  The oil is low in THC meaning you can't get high. 

In 2014 Burlington mom Sally Schaeffer fought to make CBD oil legal, and won. Lydia's Law is named after her daughter, but Lydia died less than a month later before she could start the treatment.  Then Sally found out that because of a loophole in the legislation, the law doesn't work.  And more than two years later, Wisconsin families still don't have access to the oil. 

That's something Sally continues to try and change with the help of Racine Senator Van Wanggaard. He's trying, for a second time, to fix Lydia's Law.  Last year Senator Wanggaard's bill passed the Assembly but was blocked in the Senate.

Senator Wanggaard told us, "we had a couple senators that just couldn't get on board. They were in a position that they could procedurally stop that bill." 

Late Tuesday afternoon, the senator introduced another bill and is confident this year it will pass.  "It will be an immediate fix to allowing parents to possess it here without having to worry about a criminal offense."

The Arnold family is still holding onto the hope this time around they'll be able to try the oil.  "To see Raegan come off of the other three drugs that affect her ability to learn, that affect her ability to walk, that affect her ability to communicate," Rebecca said.  A wish she has for all families still waiting in Wisconsin.

28 states have already passed CBD oil legislation. 

Under the current law in Wisconsin, you need a prescription and approval from federal agencies to use the oil.

Senator Wanggaard's bill would make it legal to possess with certification from a Wisconsin doctor. The oil can only be used to treat children with seizure disorders.

There will be a hearing on the bill in the next few weeks.  Then it's expected to go to a vote in the Senate, where it was blocked last year. The final step is a vote in the Assembly.  Lawmakers are hoping it's a done deal before March. 

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