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

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At first, the tale of Kingsley Larsen sounds similar to other success stories coming out of Realm of Caring. The terrible seizures that began soon after Kingsley's birth at Denver's Rose Medical Center in 2008 and never really stopped. The lack of movement, the lack of facial expressions, the utter inability of others to comprehend what was going on in his little head. The neurologist on call, the living room remade as an in-house pediatric emergency room, the desperate search for any pharmaceutical that would work, leading to a non-FDA-approved drug from France. Then the discovery of Charlotte's Web, which eventually led to Kingsley's first dose of the oil as a Realm of Caring patient in October 2013. And finally, the now-famous results: seizure reduction, increased cognition, little gestures and eye movements that his parents had never seen before.

But then the story changes. Kingsley's initial dose, the one that seemed to work, was extremely high in CBD and very low in THC, says his mother, Summer Forrest Larsen. According to test results provided by Denver-based CannLabs, which are included with each batch of Charlotte's Web, the ratio was 88 parts CBD to one part THC. Summer never saw that same breakdown in later batches of the oil. CBD-to-THC ratios would range from 26 to 1 to 37 to 1 to 54 to 1. She didn't need to look at those numbers to see that something about the product was changing: The color of the oil was shifting from a dark, tar-like hue to a clear yellow.

Most important, the changes seemed to be impacting Kingsley's response to the oil. His seizures were coming back, the inklings of cognition were drifting away. Finally, after a dose of Charlotte's Web in the spring of 2014 that triggered what Summer describes as "seizure hell," they'd had enough, and took Kingsley off Charlotte's Web. (Recently, they've started giving their son oils made by a different Colorado marijuana grower.) The Larsens aren't the only parents with questions about Charlotte's Web's consistency. The issue has become a major point of discussion on New Home New Hope, a private Facebook page set up for parents moving to Colorado to get access to Charlotte's Web -- or "CW," as it's often referred to in such groups.

"I have a question/concern about no detectable THC level in our most recent batch of 100mg/g CW," writes one parent. "Since our daughter's previous batches ranged from 20:1 to 30:1, I am at a loss as to how this material can be distributed as CW!"

"All I know is [I] went from having my child do the best she has ever done with regard to seizure control and cognition to the worst," writes another. "I almost feel like this current CW is...making her worse instead of helping her at all."

"This is no longer CW or what my child started on 1+ years ago," says a third parent, who adds that she doesn't like the idea of trying to add THC or other components to the oil to mimic its old makeup. After all, the whole point of not distributing Charlotte's Web samples to parents was to protect product consistency and minimize outside tampering -- and now, she notes, "I'm being turned into a chemist."

Even the producers of Charlotte's Web have changed how they refer to it. In a recent Q&A session with parents, representatives of Realm of Caring and Stanley Brothers said that Charlotte's Web shouldn't be considered a marijuana strain or even a plant, as it had been referred to in the past. Instead, said Heather Jackson, "We call Charlotte's Web the product derived from a breeding project from the Stanleys." And that product is no longer called medical marijuana, but medical hemp.

The shift is due to Amendment 64, which not only legalized adult use of recreational marijuana, but also okayed the cultivation of hemp in Colorado for the first time in nearly six decades. That allowed the operation to drastically scale up production of Charlotte's Web to meet demand without investing in expensive greenhouses, says Joel Stanley. According to Colorado Department of Agriculture rules, hemp is defined as cannabis plants with no more than 0.3 percent THC -- and Charlotte's Web has always tested below that number, according to Joel. That's why this summer they were able to grow seventeen acres of Charlotte's Web in open fields outside Wray with the state's approval; oil made from those plants is just now starting to be distributed. "When hemp regulations came out, we saw a way to shoot us into the future," Joel explains. "We went from a few thousand plants under 20,000 to 30,000 square feet of growing space to nearly a million square feet and 50,000 plants."

But would the original Charlotte's Web have qualified as hemp? Of thirteen CannLabs test results obtained by Westword for batches of Charlotte's Web grown in the Stanley Brothers greenhouse and distributed to parents over the past year, seven indicated that the THC was greater than 0.3 percent -- meaning above the hemp cutoff. Those tests have some people wondering whether Stanley Brothers had been tweaking the makeup of the plant, making it more hemp-like, before planting it in Wray. "I feel like they have done a bait-and-switch on the original parents," Summer Larsen says. "It is not the same oil."

Nothing has changed about Charlotte's Web, insists Graham Carlson, director of operations at Stanley Brothers Social Enterprises. Carlson, who worked as a microbiologist for the natural-products company ChromaDex before being hired by the Stanleys in May, says he thinks the shifting CBD-to-THC ratios and the THC numbers that came in over 0.3 percent might be due to testing irregularities. "Right now, with a lot of medical marijuana testing labs, there has been such a surge in volume in the number of samples they are testing, we have noticed a reduction in quality of those tests," he adds. That's why Stanley Brothers is switching to a new testing lab -- one Carlson declines to name but notes is associated with Colorado State University and focuses exclusively on hemp.

William Livermore, spokesman for CannLabs, which has long been testing Charlotte's Web, isn't aware of any testing inconsistencies. "Our equipment is calibrated and constantly being calibrated in excess of the standards of the Colorado Enforcement Division so we are assured that our test results are what they are," he says. "If there are variances, they could be in the sample."

Carlson concedes that this might be the case: "It's like wine. The plant is going to vary." On average, he says, the CBD-to-THC ratio in Charlotte's Web is 30 to 1, but that could fluctuate some -- just as variances are allowed in the makeup of pharmaceuticals. Could such natural variances in Charlotte's Web impact a patient's reaction to it? "Potentially," Carlson replies. "Every biological organism responds differently to chemical inputs."

And will some patients not respond at all? Paige Figi, Heather Jackson and others at Realm of Caring are always quick to point out that Charlotte's Web doesn't work for every patient. Still, the success rates they report are impressive: Case reviews of two doctors working with Realm of Caring members indicate that 73.5 percent of epileptic patients who've been on the program for at least three months are seeing at least a 50 percent reduction in seizures -- and 13.5 percent are living completely seizure-free.

According to Kevin Chapman at Children's Hospital Colorado, however, a review of 75 or so pediatric epilepsy patients who were on some kind of cannabis oil between September 2013 and August 2014 came up with a very different success rate. "Our study would suggest, for the most part, that a third of patients and families did report an improvement in seizures of at least 50 percent," he says. "That means we still have a way to go to get better therapies for these kids."

Jackson points out that Chapman and his colleagues are likely to see only those kids who aren't responding well to cannabis oil. "When people are doing well, they don't go to the hospital," she says.

Catherine Jacobson, director of research investment for the Epilepsy Foundation, says there's a problem with the success rates reported by both Realm of Caring and Children's Hospital Colorado. "These reports do not qualify as trial data," she notes. "They are reports based on parental recall, and certainly not observational studies or trials." The lack of any real scientific research into Charlotte's Web and other, similar products puts parents in a difficult spot, adds Jacobson, whose son has severe epilepsy and hasn't seen much improvement from Charlotte's Web or other high-CBD treatments. "Nobody has stepped up to gather meaningful data that can be used to inform treatment," she says. "The only way to solve this issue is to run a randomized, placebo-controlled clinical trial using the same standards as any other clinical trial." Through the Epilepsy Foundation, she's hoping to raise money to do so.

Realm of Caring agrees that a valid clinical trial is necessary; it's working to find funding for its own study. "Until we raise the research bar," says Heather Jackson, "these will all just be stories."

Continue to keep reading about Charlotte's Web, one of Colorado's biggest cannabis success stories.
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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