COLORADO SPRINGS, Colo. - Legislation to legalize a controversial treatment for children with severe epilepsy advanced Thursday in Utah, Georgia and South Carolina.
The treatment uses oil derived from marijuana. For not, it is only available in Colorado.Aaron Klepinger considers this a miracle cure: the daily dose of liquid marijuana extract, known as Charlotte's Web, given to his 8-year-old son, Hunter.
The Klepingers believe it controls seizes so severe they caused brain damage. Traditional epilepsy drugs were ineffective for Hunter. The Klepingers say that the extract has reduced the frequency of seizures from as many as 100 a day to as few as two a week.
"When he was on pharmaceuticals, he was screaming all the time or sleeping all the time or having more seizures. He's more alert and more happy than he used to be," said Dawn Klepinger, Hunter's mother.
"I feel horrible that a child's zip code is what determines their ability to get medicine that could potentially save their lives," Aaron Klepinger said.
Asked whether he believes the liquid marijuana extract can save Hunter's life, the father replied: "Absolutely. I think it can."
Legislators in 12 states are considering proposals to allow a version of Charlotte's Web to produced or sold legally.
The extract has a very low dose of THC, the chemical in marijuana that gives people a high. Parents believe other chemicals in the extract reduce the seizures. But there is no scientific study to prove the effectiveness and safety of Charlotte's Web to treat epilepsy.
"I think we have real reason to be concerned," said Dr. Amy Brooks-Kayal, first vice president of the American Epilepsy Society. She worries that parents are sailing into uncharted waters.
"We do know from basic science studies that marijuana derivatives can completely stop the cellular mechanism for learning and memory. And right now I don't know the benefits, the likelihood that it is going to help. And I know nothing about the risks," she said.
There are about 200 patients in Colorado using the extract, half of whom moved from out of state to use it legally.
Dangerous or not, they feel it the best hope for their own miracle against epilepsy.