VOL. 130 | NO. 45 | Friday, March 6, 2015
Desperate Families Plead for Cannabis Oil
By Sam Stockard
Josie Mae Mathes had her first birthday recently, but because she suffers from childhood epilepsy and infantile spasms, she’s so medicated she can barely move.
“It was a very happy day for us but sad as well,” her mother, Stacie, tells legislators about the birthday. “She was physically present with us, but her mind, spirit and body were not there.”
The Mathes family, from Mohawk, about 60 miles northeast of Knoxville, hopes to start Josie Mae on low-THC cannabis oil legally after traveling to Colorado to obtain a physician-approved red card. The oil is legal in Colorado, though not federally approved, and physicians and parents there say it controls childhood seizures and stops the brain damage that ensues, the Mathes family says.
Cannabis-infused oil, illegal in Tennessee, is being used in other areas to control seizures in epileptic children. Tennessee’s Legislature is considering a bill to legalize it.
(AP Photo/Brennan Linsley, File)
Rep. Jeremy Faison, R-Cosby, is sponsoring legislation to redefine marijuana and exempt low-THC cannabis oil from Tennessee’s controlled-substance laws so people such as the Mathes family can get it from other states without worrying about breaking state and federal laws.
“My desire is to give freedom to the parents to do what they believe is best for their children,” Faison said recently while addressing members of the House Criminal Justice Subcommittee. “They’ve found a substance that has benefited some children greatly. Decriminalize a parent who wants to give this to their children.”
He and the Mathes family both say cannabis oil has “no street value” and won’t get children high. Ironically, the same cannot be said for prescription drugs Josie Mae already takes, Stacie points out.
Faison amended his legislation to make sure physicians would order the drug for children before they’re allowed to use it. Prescriptions aren’t allowed yet because it hasn’t received approval by the Federal Drug Administration, according to parents who spoke to the subcommittee in addition to the Matheses.
They can’t bring it across state lines, either, because it’s designated by the federal government as a controlled substance. Faison says Tennessee’s law enforcement community is neutral on the legislation.
But lawmakers such as Rep. William Lamberth, R-Cottontown, say this bill could have greater ramifications than serving a handful of children.
“We just want to make sure it’s not a pot shop” distributing the drug, he says.
The panel postponed action on Faison’s bill until it could get more information from the Tennessee Bureau of Investigation and Department of Safety and Homeland Security.
Yet Tennesseans such as Gail Grauer of Memphis say it’s important to take action as soon as possible. Her granddaughter Chloe was 3 when she died in December after suffering from a neurological brain disorder that caused her to have frequent seizures. Chloe’s parents pushed legislation in 2014 that passed but didn’t have enough constitutional muster to bypass federal restrictions.
“When people say time is of the essence, that’s not just a slogan,” Grauer said.
Chloe went through every type of treatment available in Tennessee to overcome her illness. Normally, her parents could pat on her on the back and she would come out of a seizure. But she had one that lasted 26 seconds, and that began to spell the end.
“For me, personally, when the Legislature supports a right to life, that doesn’t end with conception and birth,” Grauer said. “These children are suffering pain, and they need to understand that. If there’s some way to stop them from hurting from this, we need to do what we can do.”
Josie Mae’s father, Logan, points out the medication prescribed for his daughter and other children with similar problems is so strong it forces them to fight off seizures and the medicine. The result is a baby who doesn’t progress mentally or physically.
“We’ve seen other children, after getting the same diagnosis, a future of mental retardation, never walking or talking, (use cannabis oil) and they’re running around like a normal 3-year-old kid,” Mathes said.
Says his wife, Stacie, “We don’t need to be another statistic. We don’t need to be labeled as medical refugees. We need our state to step up and allow us and allow our kids to stay in the state where all of our families are.”
Sam Stockard can be reached at firstname.lastname@example.org.