INDIANAPOLIS, Ind. - It was a battle nearly seven years in the making, but finally this year, Indiana lawmakers passed a bill allowing the use of cannabidiol or CBD oil for people with drug resistant epilepsy.
HB1148 went into effect July 1 and requires a registry for patients who use the oil. But July 1 has come and gone and there’s still no registry.
Without the registry, those families can't go to the doctor and get a prescription for CBD oil. The State Department of Health is responsible for setting it up.
"I just wish that they could give these families something. Give us something. A date, a time frame. Anything that could get us to the next step," said mother, Jess Hooker.
Hooker's daughter Addi has epilepsy and her body rejects medicine. The law requires the State Department of Health to maintain a patient registry. Families thought the registry was being developed and they would be able to start getting prescriptions when the law went on the books.
"I don't think people know how serious this is. When you have a child with epilepsy everyday is a gift. It's a gift that she's up, that she's out of bed, it's a gift that she's conscious," Hooker said.
We took these concerns straight to the lawmaker who authored the bill, Representative Bill Friend.
"Bear with us. The registry is no doubt going to be forthcoming very shortly and we'll try to have that ready so people can get on the registry and feel confident they're going to treat their children and not have any legal problems," Rep. Friend said.
Representative Friend couldn't provide a timeline but says he was willing to contact the State Department of Health to get some answers. Now the Hooker family says they may have to make a drastic move to Colorado to get help for Addi.
"I just wish they could put themselves in our position and think for just a second what a day in our life is like and how important this medication is to us," Hooker said.
The State Department of Health sent us a statement this statement: "Implementation of any new law can take time, especially when a new product has to be developed. We’re working to get the registry created as quickly as possible while also ensuring that it is secure and protects the privacy of individuals who are listed on it.”