Desperate families with children suffering from rare medical conditions have moved to Colorado seeking low-THC strains of marijuana.
Photo via Higher Perspective
Last week, Georgia Republican Governor Nathan Deal, flanked by dozens of families with children suffering from rare and intractable medical conditions, stood on the steps of the state capitol and signed the state's first medical marijuana bill into law.
"This certainly has touched my heart," the teary-eyed governor told reporters and others assembled for the signing. "And I'm pleased today we're going to make a difference." Republican State Represenative Allen Peake, who championed the bill and was also in attendance, turned to the families on the staircase and said, "You can come home now!"
Peake was speaking to the so-called "marijuana refugees"—families who have migrated to Colorado since that state legalized marijuana in 2012. Two of the refugees on the steps—now welcome back home—were Janea Cox and her five-year-old daughter Haleigh. In fact, the Georgia bill, which legalizes certain low-THC cannabis strains and oils for serious medical conditions, was named the Haleigh's Hope Act after Cox's daughter, who suffers from a rare epileptic condition that, without treatment, racks her body with hundreds of seizures a day.
A little over a year ago, Haleigh's medical condition had deteriorated so drastically, that her breathing stopped several times a day. In search of alternative treatment for her daughter, Cox moved from Georgia to Colorado, where another Georgia native, Jason Cranford, had moved in 2009 to develop a low-THC strain of marijuana for pediatric use.
"When we pulled her out of Georgia, Haleigh was given about two months to live," Cranford told VICE. Now, a year later, she was back in Atlanta to witness her namesake bill signed into law. (Cranford also named his strain Haleigh's Hope, which might make Haleigh Cox the only person to have a law and a marijuana strain named after her.)
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"It's hard to put your child on marijuana, quote-unquote, but to see how it works, there's no way you can write it off," Cox said in an interview, explaining that Haleigh had gone from having more than 200 seizures a day to about ten to 15 on a bad day, with 28 seizure-free days since they moved to Colorado.
"Now she's talking more and making eye contact," Cox added. "I think the best thing is she smiles at us now. Before, she was almost in a comatose state, awake but just out of it."
Driven by stories like Haleigh's, as well as promising preliminary studies, and—in many cases—desperation, families across the country with children suffering from similar conditions have moved to Colorado seeking non-euphoric strains of marijuana like Haleigh's Hope and Charlotte's Web. Cox and Cranford are both now on the board of a 501c3 nonprofit organization called Flowering Hope, which provides medical marijuana for roughly 150 families in the state, according to Cranford.
The rush of marijuana refugees first started around two or three years ago, in the wake of the passage of Colorado's marijuana law, with about six families who moved to the state and reported positive results from cannabidiol, or CBD, a low-THC cannabis extract that doesn't have the euphoric effects commonly associated with marijuana.
The firsthand reports especially piqued the interest of parents with children suffering from Dravet Syndrome, a rare, incurable condition that afflicts children with hundreds of small seizures a day. As word spread through epilepsy support groups, activists began to push for access in more and more states. Along with Georgia, 11 states have recently passed legislation allowing limited access to CBD, according to the National Conference of State Legislatures.
The rush to legalization has outpaced studies of CBD's medical effectiveness. This month, researchers released the results of a small clinical study concluding that CBD shows potential for treating epileptic conditions like Dravet that do not respond to other medications. However, researchers cautioned that more rigorous studies will have to be conducted to verify the conclusions.
But for parents who have run out of new medications to try and treat children with Dravet, there are precious few other options. "These parents were at a position where the doctors were saying, 'We don't know what else to try,'" New York CBD activist Kate Hinz told me. "It's an easier transition then when you have nothing left to lose."
Hinz, whose daughter suffers from Dravet, said she and her husband considered the move to Colorado, but ultimately decided it wasn't doable. Their daughter is on 12 different pharmaceuticals and receives 22 hours of nursing care a day, all of which is provided by the state of New York.
Hinz and her daughter did make a trip to Washington, DC, last month to appear at a press conference on Capitol Hill in support of the CARERS Act, a bill introduced by a bipartisan group of lawmakers that would allow states to set their own medical marijuana free from federal interference.
"These are normal everyday citizens who are forced to become drug smugglers to try and save their children's lives." –Jason Cranford
While there's been significant progress in getting states to legalize CBD, it's been a long, slow grind. In Georgia, activists worked for 16 months to get the new CBD bill through the state legislature. And in some cases, even getting bills passed isn't enough: The Florida legislature passed a bill in 2014 legalizing low-THC forms of marijuana for patients with cancer or epilepsy, but the state has struggled to implement the law; in the meantime, a ten-year-old Florida boy with a rare neurodegenerative disease who would have qualified for treatment died.
The high stakes have led some parents to extreme measures, and illegally transport medical marijuana across state lines for their children. "There are families that are breaking federal law," Cranford said. "It's a shame because a lot of the families I provide to are people like police officers and doctors. These are normal everyday citizens who are forced to become drug smugglers to try and save their children's lives."
The consequences of getting caught can be devastating for parents. Take the case of Shona Banda, an outspoken Kansas medical marijuana activist who credits concentrated cannabis oil with treating her Crohn's Disease. Earlier this month, Banda's 11-year-old son was attending an anti-drug assembly at school when he spoke up to dispute some of the anti-marijuana rhetoric. School officials reported his comments to child welfare, and Banda's son was placed in protective custody later that day. When police served a search warrant on Banda's house, they turned up two ounces of marijuana.
In a court hearing Tuesday, Banda's son was placed, at least temporarily, in the custody of the state. The court also placed a gag order on Banda to prevent her from speaking about her custody case. Banda's lawyer did not respond to a request for comment.
But if Colorado and other states are refuges for these families, they are also, in a way, an exile. In 2013, Brian Wilson made national headlines when he confronted New Jersey Governor Chris Christie at a diner and asked if the governor would sign a pending medical marijuana bill that could save the life of his two-year-old daughter Vivian, who suffers from Dravet.
Christie ended up signing the bill, but the resulting system was far from ideal for the Wilsons. There were strict limits on how much marijuana they could buy each month from the state's two dispensaries. Only dry plant material was available, not CDB oils, and an ounce cost over $500.
But if Colorado and other states are refuges for these families, they are also, in a way, an exile.
Last February, the Wilsons packed up and moved to Colorado. Now Wilson can walk to a dispensary in the morning and get an early-bird special for less than half of what they had to pay in New Jersey.
Leaving Colorado is another story, though. The Wilsons can't travel with Vivian's medicine, which means they can't travel back to New Jersey. "Our whole support system is in New Jersey," Meghan Wilson told me. "We were both born and raised there. That's our roots and life. It's hard to be 36 years old, working from home, and trying to make new friends."
The benefits, though, are both measurable and immeasurable. After trying Charlotte's Web, the Wilsons switched Vivian to a regimen of high-THC oil and lesser amounts of CBD oils, which Wilson said has "helped certain seizure types immensely." She used to be incredibly photosensitive. "Sunlight on grass, sunlight on gravel, everything would make her seize," Wilson said.
"Her more severe seizures used to be every three to four days. Now they're every two to three weeks," Wilson added, although she said Vivian still has many nocturnal seizures. "Now she goes out to school, and plays on the playground on the swings, out in the sun."
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