Charlotte's Web: Untangling One of Colorado's Biggest Cannabis Success Stories
Eric Prine's uncontrollable seizures began in late 1992, not long after the six-month-old's parents, Ronnie and Jennifer, took him to the doctor for routine vaccinations. The near-constant seizures soon left Eric a shell of his former self. "We lost every bit that was him," says Ronnie. "We never saw any more smiles or crying or anything like that, just seizures." Ultimately, mounting medical bills forced Ronnie and Jennifer to declare bankruptcy. They sold the home they'd built in Lucedale, Mississippi, and in 2004 moved to the Denver area so that Jennifer could take a nursing job; Ronnie became their son's full-time caregiver.
Eric had stopped developing; at 21, he was the size of a five-year-old. That's when the family was hit by more bad news: Chloral hydrate, the one drug that seemed to decrease Eric's seizures, was being taken off the market. Scouring the Internet for alternatives, Ronnie came across a YouTube video of two children, Charlotte Figi and Zaki Jackson, whose epileptic seizures had been drastically reduced thanks to a strain of medical marijuana named Charlotte's Web, one that was high in a non-psychoactive component called cannabidiol, or CBD. The strain was being grown outside of Colorado Springs by six brothers -- Joel, Jesse, Jon, Jordan, Jared and Josh Stanley -- and a nonprofit called Realm of Caring had been established by Paige Figi and Heather Jackson, the mothers of Charlotte and Zaki, along with Amanda Stanley, Joel Stanley's wife, to connect potential patients with the medicine.
Five of the Stanley brothers at their grow.
Ronnie called the number for Realm of Caring listed on the YouTube video and, after he'd secured a medical marijuana card for Eric, Paige and Amanda showed up at his door on April 28, 2013, with Eric's first dose of oil made from Charlotte's Web -- free of charge. That night, Ronnie and Jennifer inserted fourteen drops of the oil into the feeding tube that ran into Eric's stomach. After a single seizure the next day, Eric's seizures went away.
"I was amazed," says Ronnie. Like many parents of kids on Charlotte's Web, he began volunteering with Realm of Caring. It was like they were all part of one big, growing family, and he wanted to help spread the word. He staffed Realm of Caring's booth at the Capitol Hill People's Fair that June. Then, after a CNN documentary titled Weed spread Charlotte Figi's story across the nation in August (Eric was filmed as well, but he wasn't included in the program), Ronnie volunteered to answer the calls that flooded in from parents with sick children. As one of the first patients after Charlotte and Zaki to receive Charlotte's Web, Eric was featured on Realm of Caring's website -- in a story describing how, for the first time in 21 years, he was smiling and playing with his mother's hair.
But then Eric developed complications; he began secreting clear mucus from his mouth. Such secretions can be a serious problem for those with severe neurological conditions, since they can lead to aspiration and pneumonia. When Ronnie asked people at Realm of Caring whether other patients had experienced secretions, he never got an answer. He'd become used to long conversations with Joel and Amanda Stanley, but now he couldn't get his phone calls or e-mails returned. "They seemed so willing to help at the beginning, then all of a sudden it all went away," he remembers. And then, sure enough, a few weeks after the CNN documentary aired, Eric ended up in the hospital with pneumonia. At the same time, the Prines ran out of Charlotte's Web. When Ronnie asked for more, no one at Realm of Caring responded for several days; finally, he was told that the group had stopped delivering. So Ronnie drove two hours to one of the Stanley brothers' dispensaries in Colorado Springs while his wife waited with Eric at the hospital.
The lack of communication wasn't the only change. After months of being seizure-free, every now and then Eric would have a seizure again. Ronnie noticed that on the lab results that came with each batch of Charlotte's Web, the oil's amounts of CBD and THC, the psychoactive component, seemed to be shifting; he wondered about the medicine's potency. And it was no longer free: The price for a few ounces had gone from $100 to $200 to $350 and then, finally, $700.
By now, Ronnie had stopped volunteering with Realm of Caring. He didn't like the group's failure to respond to his queries, and he didn't like being told that he couldn't have conversations with parents calling for information until they'd signed a non-disclosure agreement. "It was sad," he recalls. "You had parents calling you from everywhere, trying to get the medicine, and I couldn't talk to them."
By this past spring, Eric was becoming bloated, as if fluid was building up in his body. Then his secretions turned milky white. Finally, in late April, he began having trouble breathing. His parents rushed him to Saint Joseph Hospital in Denver, where doctors found that his liver wasn't producing enough albumin, an important blood protein. Soon they also diagnosed him with a bacterial infection, one that he would never recover from. On May 10, as Ronnie and Jennifer sat quietly in Eric's hospital room, the doctors took their son off life support. Eric was buried on May 17, 2014 -- his 23rd birthday.
They received a condolence card from Realm of Caring, but no one from the organization attended Eric's funeral. Amanda Stanley was there, but by that point, she no longer worked for the nonprofit. And Ronnie was surprised recently to see that Eric's story is one of only two original accounts no longer on Realm of Caring's website; the other is about a child who was kicked out of the program after his mother provided medicine across state lines. (According to Realm of Caring, Eric's story was probably removed to add a newer account.)
Ronnie no longer wants to know whether, after allowing his son to live nearly seizure-free for almost a year, Charlotte's Web caused Eric's secretions and his final illness. "If Charlotte's Web contributed to it, that would mean I helped cause it," he admits. "I don't want to know if that was the case."
But he still feels let down by Realm of Caring. "It's almost like you're a family member, and then you're not a family member anymore," he says. "I think they got a little too big too quick. I think they tried to spread themselves too far before they helped the ones they started with."
Ronnie isn't the only one worried that people are getting tangled in the Charlotte's Web saga. While the story of this seemingly miraculous marijuana plant has gone international, spurring parents to move to Colorado to obtain the oil and prompting legalization efforts across the country, concerns are mounting about the famous strain. Parents are facing off against parents, activists are squaring off against activists, nonprofits are clashing with nonprofits -- and suddenly, one of the greatest success stories to come out of Colorado's marijuana movement isn't looking quite so miraculous.
Sanjay Gupta with Charlotte Figi.
Paige Figi understands the frustration, the unending questions that come via e-mail and phone calls to Realm of Caring: Why can't I get Charlotte's Web? Why is there such a long wait? Why aren't you returning my messages?
Communication has been a problem, she and her colleagues concede. While what's now known as Stanley Brothers Social Enterprises, the for-profit side of the operation, boasts 36 employees who grow and process the plants, Realm of Caring, the nonprofit side, has just four employees and a team of volunteers to handle the hundreds and hundreds of inquiries coming in every week. They're working on being more responsive, working to explain why producing and distributing Charlotte's Web isn't easy. Still, Paige knows their efforts won't stop the growing antagonism, won't stop Facebook groups like "Realm of Caring -- WARNING PAGE," which now has more than 3,000 members, from popping up. She thinks some of the bitterness is driven by people envious of Charlotte's Web success, folks who'd like a piece of the action. As Heather Jackson puts it, "When you are out front, you get a lot of arrows in your back."
But Paige also recognizes that anger is inevitable when you're working with parents of children so sick that every day is a struggle for survival. When you're dealing with trauma like that, it's almost easier to find something to rail against, someone to blame. People once used social media to spread the miraculous story of Paige and her daughter; now some of them are using it to attack her and her colleagues. "I get it -- I'm a mother," says Paige. "It is very emotional for these people when they think there is nothing left to try."
Not too long ago, Paige was at that point herself. Her daughter Charlotte, born in 2006, has Dravet syndrome, a rare but extremely serious form of epilepsy, one that buffeted her with hundreds of grand mal seizures each week and left her functioning at the level of a newborn. None of the drugs or therapies that Paige and her husband tried seemed to help Charlotte. Then in 2011, they heard about Jason David, a man in California who was treating his son's Dravet syndrome with medical marijuana. It took months to find doctors willing to sign off on Charlotte's medical marijuana card, months to find a dispensary willing to provide her with product. Eventually, however, Paige was connected with the Stanley brothers, dispensary owners who had been growing a high-CBD strain to treat adult cancer patients that they called "Hippies' Disappointment" because it was so low in psychoactive THC.
Oil made from the strain also helped Charlotte -- so much so that her seizures dropped to just a handful a month. The brothers, inspired, renamed the plant "Charlotte's Web" in her honor. This was the story -- the little girl whose recovery shocked everyone; her well-spoken, passionate parents; the six clean-cut brothers who helped them -- that caused CNN chief medical correspondent Sanjay Gupta to announce that he'd changed his mind about weed in that August 2013 documentary, triggering a media onslaught ranging from a TEDx talk to a Time magazine feature to an appearance on The View. Soon there were other stories of parents like the Figis who were fighting for this unconventional medicine, other stories about children like Charlotte who were taking the Stanleys' oil and experiencing near-incredible recoveries.
Those stories led to skyrocketing demand for Charlotte's Web -- without enough product to go around. According to Realm of Caring, there are now more than 12,000 people around the country on its wait list to receive Charlotte's Web -- compared to just 350 or so patients, mostly children, who are actually receiving oil made from the strain, at five cents a milligram, to treat epilepsy and other ailments. Since marijuana can't be moved across state lines, most of those on the wait list can't obtain Charlotte's Web now anyway. That's why many are moving to Colorado or California, where the country's first Realm of Caring licensee began operating earlier this year. So far, 115 families that have moved to Colorado are using Charlotte's Web, and 135 more new state residents are scheduled to receive their first batch of oil in the next month. But that still leaves a lot of families waiting -- more than 3,900 in Colorado and California alone.
According to the Colorado Department of Public Health and Environment, as of September 30, 427 minors in Colorado were approved to use marijuana -- up from 160 last November. Since the CNN documentary aired, Children's Hospital Colorado has seen a surge of new pediatric epilepsy patients. "For us, the children who were moving here to Colorado were really complex cases," says Kevin Chapman, a neurological specialist at the hospital and a professor at the University of Colorado Denver. "Not just seizures, but they were having problems with swallowing, feeding, cerebral palsy -- medically complex kids. And many of them showed up at our doorstep without any previous medical records, other than what parents could recall."
Every Sunday in Colorado Springs, caregivers Mark Pedersen and Regina Nelson hold a potluck at their home for new "marijuana refugees," as they're called, providing the parents with information on how to correctly dose their children with oil, how to find support services. "Parents are coming here with little or no money," says Pedersen. "I have to tell them: Be prepared. If you don't have some sort of group out here or someone to help you, it can be very hard."
Tommy Turner didn't have anyone to help him when he and his fourteen-year-old son, Coltyn, arrived in Colorado on March 4, 2014, looking for Charlotte's Web. Two years earlier, Coltyn had been diagnosed with Crohn's disease, a debilitating form of inflammatory bowel disease that left him dangerously sick, in extreme pain, stunted for his age and so weak that at times he was confined to a wheelchair. Tommy and his wife, Wendy, had put Coltyn through a gauntlet of expensive, painful medical treatments, with nothing to show for it. When they heard that medical marijuana could help with Crohn's disease, they decided to give Charlotte's Web a try. After Realm of Caring didn't respond to their e-mails or phone calls, Tommy decided to take a desperate step: He packed Coltyn into his Ford Focus and drove to Colorado, leaving Wendy and their two other children in Illinois. "I figured if I go knock on their door, they are going to help us," Tommy remembers.
But when they arrived at Indispensary, the Colorado Springs dispensary owned by the Stanley brothers that distributes Charlotte's Web, the Turners were told they couldn't be helped because they weren't part of Realm of Caring. Tommy and Coltyn spent a week driving around the Front Range, looking for other options. Tommy even bought some pot from a Denver recreational marijuana store and tried to cook it into oil in their hotel room as Coltyn sprayed Febreze to mask the smell. Then, finally, Paige Figi responded to one of the e-mails they'd sent from Illinois. She walked them through the registration process that, once Coltyn had his medical marijuana card, would designate Realm of Caring as his caregiver. That meant the organization would be responsible for growing the 24 marijuana plants he was allowed by his doctors.
After that, while the rest of the family moved to Colorado, they waited. They're still waiting today. "It takes three to four months to get medicine," says Wendy Turner. "Why do we have to wait so long to get our plants?" Eventually, the Turners found another caregiver who's been providing them with high-CBD marijuana; a recent colonoscopy indicated that Coltyn's once-ravaged colon is almost completely healthy.
Moriah Barnhart moved to Colorado Springs last December with her three-year-old daughter, Dahlia, who'd been diagnosed with an aggressive brain tumor, hoping to obtain Charlotte's Web. The two spent months waiting for Realm of Caring to let them know their oil was ready, but it never happened. The only product that Moriah was able to obtain was four small syringes of high-THC oil donated by Phoenix Tears Foundation, an organization providing cannabis to cancer patients. Finally, after six fruitless months in Colorado, she and her daughter moved back to Florida. "It was just awful," she says of her time in Colorado. "We were basically stuck at home with no income and no savings. We were left stranded."
Heather Jackson, now CEO of Realm of Caring, understands how frustrating the wait list can be for parents. "Not being able to serve families immediately, that does bother me a lot," she says. One of the main reasons for the lengthy wait times, she explains, is Charlotte Web's semi-annual harvest cycle, with a new crop planted every March and October. So if a family like the Turners signs up after the March planting, their son's assigned plants wouldn't even begin to be grown until the following October.
In the meantime, families like the Turners aren't allowed to grow their own; Realm of Caring doesn't release tissue cultures of Charlotte's Web so that others can try to grow it -- not even to parents on the wait list. It's partly for patients' own safety: "I don't know how many stories I've heard of people in Colorado, California and Washington blowing up their kitchen trying to make cannabis oil, but it does happen," he notes. But it's also to protect the operation's proprietary investment and the product's credibility. "A trademark is there so a buyer can verify the source of a good," says Joel. "And when you are talking about a product that can save a life, when you are talking about something that important, every consumer should have the right to verify the source of that good."
"If they just gave their plants away to anyone, there are many things that could go wrong," echoes Liz Gorman, a Realm of Caring parent, in a statement provided by the organization. "First, someone else may grow it differently, not grow it organically without pesticides and try to pass it off as the same Charlotte's Web that we have access to for our children. If any child were to be harmed by consuming oil extracted improperly or from a plant that isn't grown the same way and with the same attributes, it could negatively impact the Stanley Brothers' ability to make our medicine."
Denise Lovett would disagree. The parent of a child with intractable epilepsy living in northern California, she was excited to learn late last year that Realm of Caring would be opening a California wing. But after she heard that the operation had a policy of not distributing tissue samples, she removed her son from Realm of Caring's wait list. From what she'd learned while researching the medical marijuana scene, it was common practice for caregivers to share pot clones and seeds with those in need. "The one strain that helps sick and dying children, they are going to hang on to that one?" she asks. "It just blows my mind." She's still looking for an alternative, still looking for someone who can provide high-CBD cannabis oil for her son. But she's willing to wait until she finds the right caregiver for him.
"I need to find people who really love the plant," Denise says. "I don't need someone who wants to set themselves up as the next Walgreens of cannabis."
Summer Forrest Larsen with her son, Kingsley.
Jim J. Narcy
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."
Josh Stanley has struck out on his own.
Standing on his back porch in unlaced, muddy work boots, Jason Cranford takes a drag from his cigarette and gazes out at the six acres of farmland he owns in Longmont -- six acres that, if all goes as planned, will be filled next summer with thousands of high-CBD, low-THC cannabis plants that will qualify as hemp. Between tending to the marijuana crop in his South Park greenhouse, working with lawmakers in Georgia on a proposed medical marijuana bill and meeting with government officials in Jamaica about starting a grow there, Cranford's been busy. Today he's already worked around the farm, met with investors in his marijuana businesses -- Cranford owns Rifle Mountain Dispensary and co-founded Cranfords Cigarettes, a machine-rolled-cannabis-cigarette company -- and answered dozens of e-mails and Facebook messages from parents with various medical dosing questions.
Along with his for-profit businesses, Cranford runs the Flowering H.O.P.E. Foundation, a nonprofit organization that, with 120 patients and counting, is the second-largest operation providing high-CBD oils to children in Colorado. In the wake of the CNN documentary on Charlotte's Web, Cranford posted the test results on CannLabs' website of one of the high-CBD marijuana strains he'd been cultivating for years in his South Park greenhouse; it didn't take long for parents, many of whom were on Realm of Caring's waiting list, to start reaching out. Scruffy and laconic, Cranford comes across as the opposite of the straitlaced, charismatic Stanley brothers. But he had the same reaction they did when he saw what his plants could do for some children. "I was skeptical at first," he says. "But when they started trying it, we were just amazed at how well it worked." He named one of his high-CBD strains Haleigh's Hope, after a four-year-old girl with cerebral palsy and severe epilepsy who went from hundreds of seizures a day to just a handful while taking his oil.
To serve his patients, Cranford operates as a basic caregiver, having a few employees help him make the oils in a plastic-draped extraction lab he's set up in his garage; patients stop by the house to pick up new batches. He decided it was too complicated, too expensive for patients, to sell his high-CBD oils out of his dispensary, as the Stanley Brothers do; he didn't like the idea of families having to drive through the mountains to Rifle to get their product.
For a while, Cranford would ask parents to donate whatever they could afford in exchange for oil; lately, however, he's established a pricing scale similar to that of Realm of Caring, with oils starting at five cents a milligram. But there are other differences between the operations: Cranford, who uses light-deprivation systems in his greenhouses to produce four crop cycles a year, doesn't have a list; the longest anyone has had to wait for their first batch of oil has been six weeks. In addition, says Cranford, "I give out clones to parents."
Cranford says that CannLabs, which also tests his oils, introduced him to Paige Figi and Joel Stanley via e-mail last January, and Cranford offered to supply oils to patients on Realm of Caring's wait list. He says they never responded. No one at Realm of Caring or Stanley Brothers remembers such an offer; while they do list other common high-CBD strains in their new-patients' starter guide, Realm of Caring doesn't recommend anyone else's services to those waiting for Charlotte's Web. "I am looking, looking, looking, but I have not seen another organization step up with something I would give to my daughter," says Paige Figi. "I think these operations need to have a commercial license. The product has to be lab-tested, consistent, and there has to be medical support."
In a lengthy April interview in Ladybud magazine, an online women's publication largely focused on marijuana issues, Cranford criticized Realm of Caring for its wait list, suggesting that, based on his math, "they're making $10,800 off of each patient before they ever even give them any medicine."
Although Realm of Caring and the Flowering H.O.P.E. Foundation are the largest suppliers of high-CBD oils to children, other Colorado marijuana growers and caregivers are cultivating CBD-rich plants; some of these individuals are even quietly providing high-CBD oils to families in other states. And now bigger names are trying to get in on the action with their own alternatives to Charlotte's Web and Haleigh's Hope.
Greenwerkz, a Denver-based dispensary chain, is working on a large-scale indoor cultivation of R4, a high-CBD strain that master grower Kelly Roller says he's been developing since 2009 -- and that he believes is the origin of Charlotte's Web. Back in 2011, he remembers, the Stanley brothers asked him for help with one of their patients, and he provided them with trim from R4 plants, which he had been calling "Hippies' Disappointment." "We believe they took a seed and popped it, and that became Charlotte's Web," says Roller, adding that he just wants to set the record straight.
The record doesn't need correcting, counters Joel Stanley. "Charlotte's Web is not R4," he says. "We had been breeding CBD for a year and a half before we'd ever heard of R4." Plus, he adds, "having seen R4 grown and tested, it doesn't have the same CBD/THC profile."
Charlotte's Web is also facing competition from outside Colorado, including from companies like Medical Marijuana Inc. that sell high-CBD oils made from industrial hemp produced outside the country. These companies argue that their oils are exempt from cannabis restrictions because they're sold as food or nutritional supplements -- which also means the companies can't make claims regarding their medical use. "They fooled the whole country into thinking that this is medical marijuana and they need to move to Colorado to get access to this," says Medical Marijuana Inc. spokesman Andrew Hard of the people behind Charlotte's Web. Even so, Hard says that so far this year, his company has sold more than $30 million worth of high-CBD products like Real Scientific Hemp Oil Gold, its top-of-the-line product, which retails for $499 for a ten-gram tube.
But in October, Project CBD, a nonprofit educational organization, published an investigative report accusing Medical Marijuana Inc. and its subsidiaries of shady business dealings and questionable safety standards that had made some users of its products violently ill. "If there is anything that comes out of this report, I hope it's that sensible regulations for therapeutic cannabis will be implemented in accordance with rigorous standards that apply to other medicinal herbs," says Project CBD director Martin Lee. Something else has already come out of the report: Medical Marijuana Inc. is suing several individuals and organizations that contributed to the investigation for $100 million in damages. The defendants include Cranford, who was briefly tapped by Medical Marijuana Inc. as a scientific advisor before he resigned and began raising questions about its operation, and CannLabs, which ran tests on samples of Medical Marijuana Inc. products provided by Cranford.
There's another competitor hoping to satisfy that market demand: GW Pharmaceuticals, a British company, is conducting an FDA-approved trial of Epidiolex, a high-CBD drug made from marijuana. "We are leading the path forward toward developing a prescription, pure plant-derived cannabidiol medicine, which is what we believe physicians and patients desire," says company spokesman Stephen Schultz. If GW is successful, there could soon be a pharmaceutical equivalent of Charlotte's Web.
Adding to the confusion is the fact that Stanley Brothers no longer includes all of the Stanley brothers. Late last year, Josh Stanley, the oldest and most visible of the six brothers, the one featured in the CNN documentary and a popular TEDx talk about Charlotte's Web, left to start Strains of Hope, a nonprofit medical cannabis organization, and GenCanna Global Enterprises, a for-profit company marketing "cannabinoid replacement therapy" through nutraceuticals made from hemp grown in California, Kentucky and elsewhere. "I am my brothers' biggest cheerleader; I just had a different vision," says Josh. "Colorado's regulations are just too restrictive. It's fantastic to prove the efficacy; it's quite another to satisfy market demand that gets it to people who really need it."
Competing companies and nonprofits, claims and counterclaims: It's becoming increasingly complicated for parents to figure out the best way to get high-CBD oil for their children. On October 25, Summer Forrest Larsen, the Denver mother who took her son Kingsley off Charlotte's Web because of consistency concerns, posted a message on New Home New Hope, the private Facebook page set up by parents for those moving to Colorado for Charlotte's Web: "There are other CBD oils available for those who aren't finding what they used to have with CW. I know it is frustrating, but please don't be afraid to branch out and try other CBD oils provided by multiple growers in this state." An hour later, she says, she was banned from the Facebook group.
"This group thrives on love and support, and we will do what it takes to maintain an environment conducive to such," says Holli Brown, one of the administrators for New Home New Hope. "Sometimes that means removing the source of the problems from our groups rather than making hundreds of others deal with the negativity."
But Summer says she wasn't being negative, she was just trying to support other parents. "It's all about helping children, right?" she asks.
Matt and Paige Figi told their story to CNN's Sanjay Gupta.
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."
The Stanley brothers' facility.
None of the eleven states that have passed bills legalizing only high-CBD, low-THC medical marijuana have finalized their regulations. And in September, it looked like they might not need to in order to help potential patients. In an e-mail sent out to parents on its wait list, Realm of Caring announced that it would soon start shipping the Charlotte's Web hemp it had grown near Wray to all fifty states. The 2014 Federal Farm Bill had legalized industrial-hemp cultivation for academic purposes, so as long as Charlotte's Web recipients around the country agreed to participate in a research project, everyone would apparently be legally protected. It suddenly seemed like all of the state-by-state lobbying battles would not be necessary, that families looking for high-CBD oils would no longer need to leave their lives behind and move to Colorado.
But a month later, Realm of Caring sent out another e-mail: At the urging of its legal counsel, the operation was putting its national distribution plans on hold indefinitely. "That was devastating," Paige Figi says of the legal advice. "It was the one time we have had to rescind something we have promised."
Pennsylvania's Haley Barrett had already traveled to Colorado so her two-year-old son, Monroe, who has Dravet syndrome, could meet with the University of Colorado School of Medicine professor running one of the research projects when she got the news the program had been scuttled. "I do believe they were trying really hard to get this to the kids," says Barrett of Realm of Caring. "But I think they were trying to go above the law, almost. It just doesn't make sense. You'd think they would have looked into it fully before contacting the parents about it."
The people behind Charlotte's Web are pushing on. Instead of getting shipped around the country, the seventeen acres of hemp grown this summer will instead go to families waiting for Charlotte's Web in Colorado, says Joel Stanley -- which means that in the coming months, Stanley Brothers Social Enterprises could eliminate the in-state wait list entirely.
What's more, the company is close to establishing a significantly larger hemp grow in Uruguay; once that's up and running, Stanley Brothers plans to distribute the resulting oil across the United States, much in the way that Medical Marijuana Inc. and other hemp-oil companies distribute their products. And Carlson, director of operations for Stanley Brothers, is putting the finishing touches on a new home base for Stanley Brothers Genetics, in a 10,000-square-foot former semiconductor-fabrication lab in Boulder. There he will use a process called fractionation to ensure that every future batch of Charlotte's Web contains the exact same ratio of CBD to THC.
These efforts should help the company allay any concerns about Charlotte's Web's availability and consistency. But in the process, could the very things that made it so special -- the personal touch of its early advocates, the camaraderie and collaboration of the first families it touched -- be lost?
"It worries me, and it worries Heather and Paige," admits Joel Stanley. "At the end of the day, the Stanley brothers aren't important and Paige and Heather aren't important. What's important is the way Realm of Caring grows, how this community has grown. We have seen the birth of an amazing community here that most people cannot believe. It is our hope to grow that community and not sacrifice it for size."
To that end, Joel says he hopes to add a new element to Realm of Caring's website: a remembrance page for the eleven patients that couldn't heal completely, the ones they have lost along the way.
Among those listed will be Eric Prine.
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