Boy, 12, may benefit from seizure drug

Last updated: June 27. 2014 8:04PM - 1906 Views
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William R. Toler | Daily Journal12-year-old Jack Berry of Ellerbe could benefit from a hemp oil extract used to treat seizures. Gov. Pat McCrory vowed to sign a bill recently passed by the N.C. General Assembly allowing the use of the extract in the state.
William R. Toler | Daily Journal12-year-old Jack Berry of Ellerbe could benefit from a hemp oil extract used to treat seizures. Gov. Pat McCrory vowed to sign a bill recently passed by the N.C. General Assembly allowing the use of the extract in the state.
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ELLERBE — Amy Berry will soon be able to obtain a hemp oil extract to treat her 12-year-old son’s epilepsy.


“I am so thrilled that the folks of North Carolina will be given a chance to access (hemp oil),” she said from the University of North Carolina Children’s Hospital in Chapel Hill, where her son had a doctor’s appointment.


Jack Berry was diagnosed with Dravet syndrome, a form of intractable epilepsy, at the age of 6. The Berrys believe a hemp oil extract that will soon be available to child patients by prescription will help Jack with his seizures and behavioral issues.


“The passing of this law could mean huge changes for kids like Jack,” Berry said. “We are very optimistic about what (hemp oil) could do for Jack and our family, and would like to thank (Sen.) Gene McLaurin and others for their support.”


The state House passed the “Hope 4 Hailey and Friends” bill almost unanimously on Thursday, with only one dissenting vote. Gov. Pat McCrory has vowed to sign the bill into law.


The measure is named for 6-year-old Haley Ward, a Carteret County girl who averages three seizures per day.


McLaurin, D-Richmond, has been a strong advocate of the bill and said he lobbied his fellow senators for their support.


“When I cast my vote, I did it in honor of Jack Berry and the Berry family,” McLaurin said prior to a fundraising event for his re-election campaign Thursday. “It was the best thing for us to do.”


Before the bill was sent back to the House, senators added an amendment that creates a “limited-scope” pilot program to study the effects of treating epilepsy with the hemp oil extract.


The amendment designates four universities to conduct “research on hemp extract development, production and use for the treatment of seizure disorders and to participate in any ongoing or future clinical studies or trials.”


Neurologists participating in the study and treatment using hemp oil must be associated with UNC-Chapel Hill, Duke University, Wake Forest University or East Carolina University.


The amendment also creates a database with the names and addresses of patients, caregivers and neurologists. That database would have to be accessible to law enforcement.


Caregivers will be given a registration card and have to pay an initial fee, not to exceed $50, and a subsequent renewal fee each year.


“This law will help ease the suffering endured by children from whom no other treatments are effective against their seizures,” McCrory said in a Thursday statement.


“I want to congratulate the General Assembly for crafting a bill that not only improves the lives of many North Carolina children and their parents, but also provides commonsense regulation and facilitates clinical research at our major research universities,” he added.


But not everyone is celebrating.


Rockingham resident Perry Parks said this bill is a good start, but there are more people who could benefit from medical cannabis.


Parks, president of the North Carolina Cannabis Patients Network, said he spoke with the bill’s sponsor, Rep. Pat McElraft.


D-Carteret. He didn’t doubt her good intentions, he said, but asked the lawmaker, “How can you not show the same compassion to me?”


Parks, a U.S. Army and National Guard veteran who uses cannabis for the treatment of chronic pain, said he is considered a criminal by current state and federal law.


He said he wants veterans and other sick people to have access to medical cannabis for treatment of their various conditions without dealing with the “prohibitive costs of the prohibition policies.”


Reach reporter William R. Toler at 910-997-3111, ext. 16.

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