Epilepsy  Cannabis & Hemp

The new faces of marijuana

By Lisa Crivelli

http://www.msnbc.com/hardball/the-new-faces-marijuana

Charlotte Figi, the namesake of the Charlotte's Web oil.
Courtesy of Paige Figi

Two years ago, Charlotte Figi was losing a lifelong battle to epilepsy. Her parents were using a hospice program at home because she wasn’t eating, had chronic pneumonia, and couldn’t swallow water. At the age of five, Charlotte was suffering up to 50 seizures a day.

Fast forward to today: Charlotte, now seven, is like any other child. She rides horses, goes to school, and plays with her twin sister and older brother. Her parents say she is “99% seizure-free,” suffering usually one seizure a month which is under control after a few minutes.

“She can hike a couple of miles a day,” Paige Figi, Charlotte’s mother, told MSNBC. “She can walk, talk, feed herself, has a normal sleep cycle and she has not taken prescription medication in two years.”

Charlotte’s miracle? Medicinal marijuana oil.

“We were using [medicinal marijuana] as end of life comfort measures,” Figi explained. But it turned out that those measures saved Charlotte’s life.

The movement to legalize medicinal marijuana has a face like Charlotte’s–and it’s a young one that’s hard to ignore. Lawmakers across the country are pushing legislation to legalize marijuana oil as a treatment for children with epilepsy. The marijuana extract is produced in Colorado and is designed to not produce a high. Instead, the strain has increased levels of CBD, a chemical that fights seizures. 

The organization the Realm of Caring developed the marijuana oil strain now known as Charlotte’s Web, which was named after Charlotte Figi–the first child to test the oil two years ago. On average, the organization says 85% of people taking Charlotte’s Web have seen a reduction in seizures.

Since the development of Charlotte’s Web, many parents have traveled to Colorado to treat their children, since the state law does not have a provision that allows the shipment or sale of marijuana products out-of-state. Others have gone as far as to relocate their families to Colorado for the oil. The Realm of Caring says they have 100 patients who have moved to Colorado from 43 other states, and there is a waiting list of more than 2,000 people who are willing to relocate. An additional list exists of more than 4,000 Colorado residents who are waiting for the oil. Doctors work with the Realm of Caring to determine each patient’s dosage based on their weight, and the cost of Charlotte’s Web is about 5 cents per milligram. The Figi family’s monthly cost for the oil is about $180 a month.

Left: Charlotte’s medicine | Right: The Stanley brothers (Jon, Jared, Joel, Jesse, and Jordan), the founders of the Realm of Caring and makers of the Charlotte’s Web oil.
 
Photo by Paige Figi

Currently, there is a rapid movement to legalize medicinal marijuana across the country: four states in March alone (Kentucky, Utah, Alabama, and Georgia) passed legislation to allow the use of the marijuana oil for medical purposes. The fight to allow medicinal marijuana now heads to the floor of the North Carolina State Assembly, and lawmakers there are doubling down on their chances of legalizing with two bills up for consideration. When the assembly reconvenes next month, it will consider one bill to legalize all forms of medicinal marijuana and another that focuses solely on the cannabis oil for the treatment of epilepsy. 

“There seems to be a sense that something has got to happen,” said State Rep. Kelly Alexander, who is sponsoring the bill for medicinal marijuana. “This is a bipartisan measure to find a way to alleviate the pain and suffering of those with illnesses.”

Alexander spoke on behalf of his bill when it was introduced to the North Carolina General Assembly last year, but it was placed on an “unfavorable report” and put on hold. State Rep. Jonathan Jordan told theHigh Country Press that he was not likely to support the bill unless he saw evidence of the success of medicinal marijuana, and State Rep. Paul Stam told WRAL in Raleigh, “We did it to be done with it so people could move on for the session.” 

Stam claimed lawmakers were being harassed by emails and phone calls in regards to the bill. MSNBC reached out to Stam, who declined to comment for this article.

But lawmakers who support marijuana legislation could see an advantage at the polls in November. In a recent George Washington University poll, 39% of surveyed voters say they would be more likely to vote if there was a proposal on the ballot to legalize marijuana. An additional 30% of those surveyed said they would be more likely to vote in the 2014 midterm election under that circumstance.

Americans also seem to be more open overall to changing marijuana laws. Plans to legalize marijuana show a 73% approval rating while decriminalizing the possession of pot has a 53% approval rating.

Charlotte and Paige Figi.
 
Photo by Paige Figi
Paige Figi said the opposition in states like North Carolina was based on preconceived notions about the damages of marijuana as a whole. “Some states are very conservative and just won’t allow cultivation because they can’t figure out a way to regulate it,” Figi said. “There are no negative side effects, absolutely none. THC has shown long-term cognitive loss, but that’s not in this oil.”

Recently, the Realm of Caring began cultivating Charlotte’s Web in the form of hemp, which can be dispersed to a wider population. The organization is continuing its work to expand the legalization of medicinal marijuana to other states, sharing Charlotte’s story as a means to give hope to the families of epileptic children. 

“We had a DNR [do not resuscitate] signed,” Figi recalled. “Nobody thought [Charlotte] had any time left…and now she is doing amazingly well.”