Marijuana

Charlotte's Web: Untangling One of Colorado's Biggest Cannabis Success Stories

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On August 7, Sebastien Cotte and his wife, Annett, got in their Nissan SUV with their three-year-old son, Jagger, and began what Sebastien now calls "the trip from hell."

A year after he was born, Jagger was diagnosed with Leigh's disease, an extremely rare mitochondrial disorder that left him plagued by seizures, wracked with painful muscle spasms, and given a prognosis of just a few years to live. By this summer, Jagger was building up a tolerance to the experimental drug that had helped to keep the pain at bay, so his parents decided it was time to move from Stone Mountain, Georgia, to Colorado to get him cannabis oil -- even though some of Jagger's nurses warned that he might not survive the trip.

Jagger survived, but the trip wasn't easy. His parents could only drive a few hours before the oxygen concentrator device that was keeping him alive in the back seat would run out of battery power, and they were constantly lugging bulky machinery from their car to hotel rooms. Finally, after six days on the road, they made it to Denver and immediately began the medical marijuana card approval process. Now Jagger is on oils made by the Flowering H.O.P.E. Foundation, with encouraging results: His seizures are greatly reduced, his pain seems manageable. But eventually, says Sebastien, the three will be making another trip from hell back to Georgia: "My wife doesn't want Jagger to die here."

Sebastien Cotte is working with other parents back in Georgia who are lobbying for the legalization of medical marijuana. And as he sees it, that puts him at odds with Realm of Caring and Paige Figi, whose story helped inspire him to move to Colorado in the first place. While speaking in Atlanta this summer at a legislative hearing on a medical marijuana bill, Paige told lawmakers that "I am assured the political climate in Georgia is not ready" for full medical marijuana. Instead, she recommended the legislature legalize only low-THC, high-CBD marijuana strains like Charlotte's Web.

This didn't make sense to Sebastien. Earlier this year, Georgia legislators had nearly legalized medical marijuana before that effort failed; polls suggested that 54 percent of Georgia voters support full marijuana legalization. "We were working so hard to try to get a comprehensive bill and full-spectrum cannabis so more patients can actually benefit from it, and here she was, making unfounded statements," he says. And he now knows firsthand the importance of allowing all kinds of medical marijuana: Jagger consumes oils that feature not just CBD, but also THC, since CBD alone wouldn't do much for his muscle pain.

Georgia isn't the only place where Paige has been advocating for the legalization of high-CBD, low-THC cannabis. Over much of the past year, as Realm of Caring's spokeswoman, she's been speaking with lawmakers all over the country; her story has helped inspire a wave of new medical marijuana laws. But of the fourteen states she's worked in that have passed such laws, eleven gave the okay to only high-CBD, low-THC strains. And in July, Realm of Caring celebrated the introduction of the "Charlotte's Web Medical Hemp Act of 2014," a federal bill that would exclude industrial hemp and CBD from the definition of marijuana, thereby allowing Charlotte's Web and similar strains to be sold nationwide. "It's a huge day, we're celebrating, we're very excited," Paige told the Huffington Post at the time.

But even the man who helped launch the movement thinks that proposal is too limited. "It isn't one-size-fits-all," says Jason David, the California father who inspired Paige to seek out marijuana for Charlotte. "CBD isn't the only medicine that helps, and it doesn't always work. The fight for cannabis legalization has been for whole plant forever, and now a company has made the cannabis half-good, half-evil for their profits."

Paige says she's in favor of full medical marijuana legalization; she just believes that in many of the places she's been lobbying, high-CBD, low-THC legislation has to be the first step. "Most of the states I've been to, full medical marijuana is never an option," she says. "When I speak to government boards and committees, they say they will never sign that into law.... I get the absolute most I can get, and the absolute most [lawmakers] are comfortable with."

Dana Ulrich has been lobbying for the legalization of medical marijuana in Pennsylvania to help patients like her seven-year-old daughter, Lorelei, who has intractable epilepsy. Last November, Paige Figi and Josh Stanley, who was then still working with his brothers, appeared at a rally at the state capitol in Harrisburg, but at a planning meeting after the event, Ulrich says they discouraged parents from fighting for full medical marijuana. "They told us, 'This is what we do. We go to states, we tell them you need to do CBD-only, and if you don't, it will kill your bill,'" says Dana. (Josh says he doesn't remember saying such a thing -- and doubts he did, since he's now adamantly against high-CBD, low-THC legislation. "High CBD is not the answer for everybody," he says. "There are over 100 compounds in the plant, and they all need to be studied. It's a bad play.")

Dana and her colleagues decided to push for full legalization anyway; she believes that's partly the reason that Paige failed to show at a legislative hearing she was scheduled to attend this past June. (She also thinks Paige was unhappy when she learned that Cranford, of the Flowering H.O.P.E Foundation, would testify as well.) Paige denies that; she says that taking care of Charlotte in addition to her Realm of Caring schedule doesn't allow her to make every meeting she's invited to. "If I bail on a state, it's because I really can't be there," she says.

Pennsylvania's medical marijuana bill died last month. Still, Dana Ulrich isn't willing to settle for a half-measure; she's going to keep fighting for full medical marijuana. "Even if CBD-only works for me, why is my kid more important than a veteran with PTSD or an adult with cancer? Why does my kid take precedence over anyone else?" she asks. "I can't lay my head on the pillow and sleep soundly knowing we are leaving everyone else behind."

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Joel Warner is a former staff writer for Westword and International Business Times. He's also written for WIRED, Men's Journal, Men's Health, Bloomberg Businessweek, Popular Science, Slate, Grantland and many other publications. He's co-author of the 2014 book The Humor Code: A Global Search for What Makes Things Funny, published by Simon & Schuster.
Contact: Joel Warner