From wlfi.com, written by Dustin Grove
LAFAYETTE, Ind. (WLFI) — For nearly a decade, Brandy Barrett has been fighting for her son Noah’s health. More specifically, his healing.
“He was born a typical, healthy little baby boy,” said Barrett.
But at 6 months old, Noah suffered the first of what would be many uncontrollable seizures.
“As a parent, that’s a very scary scenario. You don’t know what’s going on,” said Barrett. “You just are helpless watching this.”
After several trips to emergency room and numerous doctor visits, a battery of tests revealed Noah has Dravet Syndrome — a rare epileptic seizure disorder, also known as intractable epilepsy, that has grave effects on a child’s development.
“Besides being nonverbal, a lot of the skill levels are those of maybe a toddler,” she said. “We still see things progressing. The potential’s there. We just have a lot to catch-up on.”
Medication after medication, she says, has done little to help. But in 2014, Barrett said she learned about something other families were using that did show promise. It’s called Cannabidiol, or CBD, and it comes from the hemp plant.
The problem for Barrett is that in Indiana, CBD is currently illegal.
“Many doctors have tried all kinds of medicines that have not worked,” said Democratic State Rep. Shelia Klinker. “But this one works.”
Klinker and her colleagues in the Indiana House voted unanimously this year to pass House Bill 1228 — a proposal that would exempt users from criminal punishment if they have a recommendation from a doctor. It also urges the Indiana University School of Medicine and other educational institutions to “research the use of cannabidiol oil (CBD) from a hemp plant in the treatment of intractable epilepsy.”
The oil would have to contain no more than three-tenths of a percent of THC and contain no other controlled substance, but critics are still concerned about it.
“We have several concerns,” said Daniel Miller, a spokesperson for the Indiana Prosecuting Attorneys Council.
He said CBDs are currently being tested by two major pharmaceuticals for treatment in epilepsy. But so far, no medical association or regulatory agency has approved its use.
“The concern there is that cannabidiol is being tested but it hasn’t been necessarily proven to be efficacious treatment for any form of epilepsy at this point,” Miller said. “And so the state of Indiana [would be] making legal a drug that has not received FDA approval for anything, that concerns us greatly.”
Miller also worries police K-9s trained to sniff out drugs wouldn’t be able to tell the difference between what’s legal and what’s illegal.
“I think the field is potentially bright for at some point some sort of pharmaceutical drug that is based on a cannabanoid that is present in the hemp plant … but I think the position of the prosecutors’ attorneys throughout the state and IPAC is … let’s let the research do its job and get something that really works before we jump into this,” Miller said.
Previous attempts to legalize CBD oil in Indiana have failed.
Supporters insist the low levels of THC prevent anyone from getting high.
In a statememt, the Dravet Syndrome Foundation said CBDs are not psychoactive. It went on to say it continues to learn about patient experiences, “both successful and unsuccessful.”
It went on to say, “Until there is more definitive scientific evidence concerning the safety and efficacy of CBD, DSF recommends that all families continue to work closely with their treating physicians to make the best decisions regarding medical care.”
Barrett says she will continue to fight.
“Intractable epilepsy affects close to 20,000 people in this state,” she said. “Those are 20,000 people who should have the opportunity to try this and to see if it will work for them. It’s shown great success in many individuals with intractable epilepsy, and we have that hope that it will do the same for Noah and for the others in this community and in this state.”
The bill is currently in the Senate.