What To Do When Your Child's Medicine Is Illegal: Meet The Medical Marijuana Refugees

By WeedMaps News' Juliet Bennett Rylah, provided exclusively to Benzinga Cannabis.

It's not uncommon to hear anecdotal stories of individuals or families who must move for medical reasons — specifically, access to medical cannabis. Some of these cases draw considerable media attention, like that of Yvonne Cahalane, the Irish mother who moved to Colorado for her then-2-year-old son, who suffers from a seizure disorder called Dravet syndrome, according to the United Kingdom newspaper The Guardian. 

For Cahalane, her journey to find help for her son took her across an ocean. But many Americans are moving for the same reason, shifting across the nation as legislation governing cannabis changes state-by-state. 

The displacement of families seeking legal medical marijuana is becoming so well known that they now have a name: medical refugees. They tell their stories to reporters, document their struggles on social media, and while caring for ailing family members, hope to inspire legal changes.  

They also join groups such as American Medical Refugees, a Colorado-based support group for families hoping to connect with those in similar situations and find resources. The organization was co-founded by Amy Dawn Bourlon-Hilterbran after she moved to Colorado from Oklahoma in 2013 for her son, Austin, who has Dravet syndrome. (Oklahoma wouldn't legalize medical marijuana for another five years, but the plant has proven exceptionally popular among patients in the conservative state.)

These heart-wrenching anecdotes of ailing children and the risks their parents take to help them are not hard to find, but data that measure their numbers are sparse.

Data Not Readily Available

The moving company U-Haul tracks migration trends, but it and others don't ask customers how they feel about cannabis. The tech company MoveBuddah.com, which helps people figure out the best methods for their move, doesn't specifically ask people why they're packing up. However, founder Ryan Carrigan noted in 2018 that of the 1,500 inbound moves his company had facilitated to legal states (then Oregon, Washington, California, Nevada, Colorado, Maine, Massachusetts, and Arkansas) almost 5% voluntarily mentioned legal cannabis as a reason for their move. Of those, three said it was the No. 1 factor in their move. Two were individuals older than 65 hoping to use cannabis for pain relief, while one was a parent seeking cannabis treatment for a child who suffered from seizures. 

Census data can also chart the ebbs and flows in a state's population, but it doesn't ask whether  people relocate for medical marijuana. Researchers have done their own polling. In the study “The Pot Rush: Is Legalized Marijuana a Positive Local Amenity” released in March 2018, researchers Diego Zambiasi of the University of Basque Country in Spain, and Steven Stillman of the Free University of Bozen-Bolzano in Italy and the Institute of Labor Economics (IZA) in Germany, reported that they found “strong evidence” that migrants saw legal cannabis as a positive amenity. They compared the actual post-legalization growth of Colorado with a “synthetic Colorado,” or, a composite of 13 states where cannabis isn't legal. 

According to Zambiasi's and Stillman's study, prior to legalization from 2005 to 2009, 187,600 people on average migrated to Colorado annually. After medical marijuana was legalized in 2010 and up to 2013 when adult-use was legalized, in-migration increased by 20,760 people per year, an 11% increase, in Colorado compared with synthetic Colorado. After full legalization in 2013, in-migration further increased by 15,470 people per year, an additional 8.2% increase.

The researchers' statistical analysis determined that the rise wasn't from chance, but that Colorado was “a clear and significant outlier.”

Further, “In total, 155,500 more people moved to Colorado than predicted … .” In the end, the researchers concluded that marijuana legalization increased Colorado's population by 3.2% in 2015. Numbers tell part of the story.

Helping Families Move

According to American Medical Refugees board member Sebastien Cotte, the organization helped about 400 families in some way midway through 2018, up from about 150 two years earlier, according to media reports. These families had moved to Colorado from more than 35 states and three countries.
Cotte and his wife Annett know well what these families face. Their son, Jagger, has Leigh syndrome, a neurometabolic disorder that manifests in seizures, muscle pain, difficulty breathing, and other symptoms. Cotte became interested in cannabis as a possible treatment for his son in 2013, after seeing “Weed,” Dr. Sanjay Gupta's documentary about medical cannabis, on CNN. He connected with other parents in Georgia through medical cannabis advocacy organization Americans for Safe Access, but their initial attempts to pass a bill legalizing medical marijuana in Georgia failed. In 2014, Cotte's family decided to move to Colorado. They were one of 17 families to leave Georgia at that time, many of them receiving financial aid from Republican state Rep. Allen Peake. 

Access to legal medical marijuana has prompted patients or caregivers, often parents of children with serious medical conditions, to move to states where it's available. One support group calls them medical refugees. (Illustration by Franck Boston via Shutterstock)

Jagger's condition makes it impossible to fly, and Cotte described the six-day, cross-country drive as treacherous.
“When Jagger gets his muscle pain, he starts screaming. The more he was screaming, the more oxygen he needed. So pretty much every three to four hours we had to stop, spend the night in a hotel, calm him down, and recharge the battery on the oxygen [machine],” Cotte said. 

Cotte's difficult move illustrates a common pain point for these families. Not only do they have to move, but traveling is often far more difficult with an ill child or family member. They are forced to make a complicated journey, away from their home, friends, and support network. Cotte said some families were forced to split up, with certain members moving to legal states while the others stayed behind to keep their jobs and provide financial support. And many of them just want to go home. 

“You leave everything behind and hope for the best and you don't know if it's gonna work. It's taxing emotionally and financially. It's not something easy to do or that I would recommend anyone doing unless you really have to,” Cotte said.

Cotte moved back to Georgia in after it became legal to possess low-THC cannabis oil in 2015. The bill was called the Haleigh's Hope Act after a young girl who suffered from near-constant seizures. Her family also moved to Colorado for medical cannabis.

Returning Home

Cotte was happy to return to Georgia. The altitude in Colorado made it hard for Jagger to breathe, plus it was a financial strain to pay both their Georgia mortgage and their Colorado rent. Most of those other 17 families have also moved back home, too, Cotte said. Yet things aren't perfect.

For one, Georgians can possess cannabis oil with only 5% THC or less, and they must have a qualifying condition to apply for a card. And while it may be legal to possess the oil, there's currently no legal way to purchase it. Republican Gov. Brian Kemp signed a bill that now allows the production, distribution, and import of medical cannabis in April 2019, but months will pass before the state's patients will be able to walk into a dispensary. Those who need it now must break the law to get it. 

Advocate and lobbyist Jason Eassa pointed to two high-profile cases of someone intentionally breaking the law to get medicine to Georgia families. Peake, the same lawmaker who provided financial aid to Cotte's family, has admitted to running an underground medical marijuana network. And there's Dale Jackson, a Georgia father whose son takes cannabis oil for autism and who has openly described in the LaGrange Daily News how harrowing it is to smuggle $15,000 worth of cannabis oil out of Denver International Airport.  

“There's no reason somebody should have to pay for a plane ticket or use a private jet to get to Colorado and buy $15,000 worth of oil and bubble wrap it, scared that TSA's gonna see it, and fly it all the way back [to Georgia],” Eassa said. “And frankly, there's no reason someone should have to drive down to Florida for it.”
It's the constant worry of legal ramifications that silences many families and individuals who move for cannabis. According to Cotte, there may be double as many people who moved to Colorado for cannabis than American Medical Refugees even knows about.

'Fear or at Least Uncertainty'

David Brown, an attorney, lobbyist, and president of Sensible Marijuana Policy for Louisiana, said there's often “an element of fear or at least uncertainty” for these medical refugees. He points to a veteran who was worried that if he were more vocal about his need for medical cannabis, he might lose his federally funded veterans benefits. Some parents worry about the legality of providing a federally illegal substance to a minor, or that they may face prosecution or lose their children if they speak out. As a result, Brown said it's hard for his organization to accurately track how many people they work with and how many people are moving.
“I'm certain that even if we had assigned everyone a number, we would have only captured a small fraction,” he said. “A lot of these people are not networked. Maybe they heard from a friend or family member that there's someone they could stay with in another place, so they leave and don't talk to anyone about it.” 

And while cases involving ill children often receive the lion's share of media attention, there are adult medical refugees, too, including veterans, senior citizens, and individuals suffering from myriad conditions. 

Zoey Bullock, a cannabis consultant who goes by the nickname Betty Chronix, said she moved from Virginia to Florida for access to medical cannabis. Bullock was 12 years old when she was sexually assaulted, which left her with anxiety and post-traumatic stress disorder (PTSD). At one point, Bullock even attempted suicide. Then, as a teen, her friends introduced her to cannabis. 

“It was, really, just the only thing that gave me some calm and some peace with anxiety,” Bullock said. “Today, being a medical patient, it's even better because I'm able to really know what I'm consuming and it really helps to be able to use medical cannabis.”
Bullock and Rhian Santini, an esthetician and reiki practitioner, are in the early stages of their nonprofit, The Healing Light Foundation. They work with local shelters to find women survivors of abuse and domestic violence and connect them to healing and wellness services, including medical cannabis, massage, and spiritual work. Some women are already fleeing domestic violence or volatile situations in their home states, so Bullock hopes to expand her network to cities and states that are not currently 420-friendly.

“We want to have a bigger presence in the U.S. to be the supportive element for women who want to relocate for cannabis,” Bullock said. 

While individuals and families are still relocating for cannabis, the moves for medical cannabis have likely already peaked because of changing U.S. laws. Cotte noted that back in 2014, when his family was preparing to move, some families were leaving home simply to access CBD. With the passage of the 2018 Farm Bill, which allows people across the country to purchase hemp-derived products, those moves may no longer occur.
Until medical cannabis is federally legal and easily accessible, the stigma and fear these families and individuals face will likely remain. There may never be an accurate count of medical refugees in the U.S., but some are working hard to make that number zero.

Feature image: A study by professors from Spain and Italy found in-migration to Colorado increased when both medicinal and adult-use marijuana were available when compared with a composite of 13 other states where marijuana wasn't available. The researchers said marijuana availability alone accounted for 3.2% of Colorado's population increase. (Photo by LeManna via Shutterstock)