Cannabis oil bill provides hope for local family
North Carolina legislators have cleared the way to allow the use of hemp oil extract treatment in clinical studies, giving hope to those who suffer from severe seizure disorders including one Tuscola High School graduate.
Earlier this month, Gov. Pat McCrory signed the legislation called "Hope 4 Haley and Friends" passed the House in June with almost full support.
Cannabis oil is not the same as medical marijuana. It's low in THC, the euphoric property in marijuana, so it doesn't produce a high. However, the oil is high in CBD, a property that has been shown to possibly quell extreme seizure disorders.
“For some children, this treatment is the only relief they can get from debilitating seizures,” McCrory said. “Additionally, provisions in this law will lead to clinical research at our universities that could help in the development of new and more widely accessible therapies."
The law allows neurologists to conduct evidence-based studies exploring the safety and efficacy of treating intractable epilepsy with the hemp plant oil extract. Possession of hemp oil without being enrolled in a medical study is still illegal.
That means that North Carolina patients must participate in one of the studies in order to have access to the oil. For now, it's unclear how many studies there will even be.
For Eugenia and Harold Franklin, the news of the bill being signed into law was one of surprise and excitement.
"We are really excited to see what this is going to bring. I was very surprised that it went through. I hoped it would, but the way some of the laws and politicians are, I just didn't think it would go through as quick as it did," Eugenia Franklin said.
The couple has been advocating for a cannabis oil bill since they heard about the possible benefits it could have for seizure patients. Their daughter, 24-year-old Amanda, has had severe seizures since she was only 4 months old as a result of a still undiagnosed condition. Multiple seizures in a day are not uncommon. When she was sick with a stomach virus earlier this year she suffered 40 seizures in 24 hours.
Because the legislation is the first of its kind in North Carolina and still in its infancy, Franklin is not sure if or when Amanda will be able to get the treatment. But the family remains hopeful because it's their last hope.
The more than 26 different medications Amanda has tried over the years have failed to address her severe daily seizures. She's also undergone four brain surgeries in an attempt to quell the side effects. Doctors have repeatedly told the family that it's only a matter of time before the strong medications take a severe toll on her body and may eventually stop her heart.
Franklin hopes a study will be piloted at the medical community of Wake Forest University, which would be within a day's driving distance.
"Her neurologist in Asheville has said that he will refer us to whichever one we want to go to," she said.
But at this point, Amanda's doctors still seem in the dark about what the new law even means.
Patients will need to be able to meet certain criteria, which may be different for every study. Franklin said one doctor told her Amanda would have had to have failed at least three treatment options to be qualified for one study, which she does meet.
But Franklin also has heard that it could take up to six months before the studies even begin. She's also heard that medical insurance and Medicaid will likely not pay for the studies, but she has not heard anything about how much it could cost. She hopes the studies will be charged based on the family's income so they can afford Amanda to be a part of it.
"Right now I guess it's a process of them getting all the bugs worked out and getting guidelines and patient registry set up," Franklin said. "Until then, we're kind of in a hold pattern."
Knowing legislators are showing support for cannabis oil is encouraging for the family and they hope it could mean even more support in the future. All they want is a chance to try it because it may be their daughter's last resort.
"It may not help, but it might help and it's worth a try," Franklin said.