Almost three years ago, the Mississippi Legislature passed Harper Grace's Law, named after then-2-year-old Harper Grace Durval who suffers from Dravet Syndrome, a rare form of epilepsy.
The legislation allows marijuana oil to be used to treat children in Mississippi who suffer from epilepsy seizures. It removed the cannabis extract oil from the state's illegal drugs list.
Although it was 2014 when the law passed, no one seems to know for sure when the cannabis oil might be available for use in Mississippi. The necessary federal approval has yet to be obtained before testing and ultimate use.
“If it doesn’t become available soon, we will be moving,” said Harper Grace’s mother, Ashley Peszynski Durval. “We can’t wait forever. I just hate it didn’t happen fast enough for Harper Grace and all the others who are waiting.”
Dr. Brad Ingram, director of the Pediatric Comprehensive Epilepsy Center at the University of Mississippi Medical Center, said the hospital is expected to submit a 32-page proposal by the end of the month to the U.S. Food and Drug Administration to allow the oil for treatment of five to 10 of the most sick children with the oil.
However, Ingram said it will likely be late spring or summer at the earliest before UMMC would receive permission to begin the trial use of cannabis oil on patients.
Ingram said a lot of work has gone into the proposal, but he said federal approval is out of his control.
Durval said she knows people who are getting cannabis oil from other states and she can get it if she wants to, but she discourages such a practice.
“It puts what we are fighting for in jeopardy,” Durval said.
Also, Durval said there are risks associated with getting cannabis oil from other areas. She said Harper Grace only benefits from pure CBD, not cannabis oil from someplace like “Bubba’s Smoke Shop,” of which the purity would be questionable.
Durval said her daughter is doing better than she was when the law went into effect.
The National Center for Natural Products Research at the University of Mississippi School of Pharmacy has said that "federal approvals are still pending, including manufacturing quotas through DEA (Drug Enforcement Administration) and approvals for the clinical study."
Conducting clinical research using marijuana involves three federal agencies. This includes: obtaining the marijuana from the National Institute on Drug Abuse within the National Institutes of Health; review of an investigational new drug application and the research protocol by the FDA and an investigator registration and site licensure by the DEA..
UMMC said any such clinical trial established there would initially involve children with refractory or more serious types of epilepsy.
There are no current plans to study the effectiveness of CBD oil or smoked marijuana on seizure activity in adults.
"We understand the urgency and immediate need for improved treatments and are moving forward under that motivation. At the same time, our efforts are balanced by great measures of care, safety and compliance with current laws and the safety of the patients," UMMC said.
Lawmakers on both sides of the aisle supported the legislation. Sen. Josh Harkins, R-Flowood, authored the bill.
Pilot program proposed
A bill filed in the Legislature this year by Rep. Joel Bomgar, R-Madison, would allow a pilot program for medical marijuana use in the state for those suffering with a debilitating illness.Bomgar said both his mother and father died from cancer. He said both went through chemotherapy and had trouble keeping down food. He said he believes there would have been fewer side effects if medical marijuana would have been available for use by his parents before their deaths.
"My heart goes out to Harper Grace and others," Bomgar said.
2017 LEGISLATIVE BILLS: A summary of bills filed this session.
Durval said she is a supporter of Bomgar's bill.
Bomgar said people across the state have called him to support his legislation, but he said it isn't getting any traction in the Legislature. He urges people to call their representatives to ask them to support the legislation.
Under his bill, Bomgar said a person wouldn't be able to smoke marijuana. He said it would have to be taken by pill or edible form.
"There are a lot of tight restrictions in the bill," Bomgar said.
Bomgar said support for medical marijuana use fits into his conservative Republican philosophy of not getting between a doctor and a patient. He said if a doctor wants to use medical marijuana to help a patient with a debilitating illness, he or she should be able to do so. He said it is now illegal for a doctor to prescribe medical marijuana.
Bomgar also has a companion bill to legalize the growing of hemp plants for industrial use.
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