Campaigning for Cannabis in Idaho 

Spotty medical marijuana laws sentence families to lives of uncertainty

The view from the Careys' home in the Boise Foothills is a sweeping vista of parks, cottonwood trees and mountains, but the Carey kids mostly look out the windows.

Summers are spent indoors, waiting for the heat to pass. The slightest rise in temperature or even a ray of sunshine can trigger another seizure in 9-year-old Alexis. Trips outside the home are mostly little more than air-conditioned car rides. On a blazing July day last summer, Clare Carey loaded up her cabin-fevered kids for a drive in the hills. She drove along the Boise River, past parks, toward Lucky Peak Reservoir in a rare respite from their usually sequestered life. When they arrived at a vantage point, the Carey children peered out the windows, watching kids splash in the spray of a fountain, play in the water and run on the sandy beaches of Lucky Peak State Park.

The traditional activities of childhood summers in Boise, just feet from their car, tempted Alexis' big brother; but for the Carey children, it might as well have been on TV.

"He asked, 'Can we stop?' I said, 'No, it's too hot. We can't,'" Clare said.

Clare's voice cracked as she told the story of that summer excursion. The matter-of-fact mom usually speaks of the contentious medical marijuana debate with the scientific objectivity and calm she employed in her career as a physical therapist, but she battles emotion as she talks about the price all of her children pay for Alexis' illness.

"I should be taking my kids to the park, not the Statehouse," Clare said.

The kids often hear "no" and "can't" as they ride a roller coaster of canceled vacations and hospital stays while the Careys battle for their daughter's future. They fight for insurance coverage; they fight to keep their daughter alive and comfortable; and, when they have time, Clare, a full-time mom and her husband, Boise pathologist Dr. Michael Carey, fight to change Idaho's medical marijuana law—one lawmaker, one conversation and one study at a time.

During the 2014 legislative session, the Careys quietly lobbied Idaho lawmakers to introduce a medical marijuana bill that would allow patients access to low-THC cannabis for medical use. Legislators told the Careys the time wasn't right: Elections were around the corner. The family was told to wait.

"We can't wait," Clare said. Any seizure could be Alexis' last.

The Careys hold out hope that the 2015 legislative session ends the waiting game. They're asking lawmakers, once again, to allow them to give their daughter a medicine that could save her life. But they need help.

"We just don't have time for this. We should be in the park. We shouldn't have to be dragging our sick kids to the Capitol so they can get their medicine," Clare said.

Zip Codes & Health Codes

Zip codes matter in the battle Alexis has been waging since soon after birth. The first seizure racked her body when she was 2 months old. What the Careys hoped was an isolated event increased in frequency and continued in daily waves. Now the Careys stay within arm's reach of their daughter at all times. They're always ready to catch her.

By 17 months, Alexis' development started to regress. She lost her ability to walk and talk as several seizure types emerged, eventually leading to a diagnosis of Severe Myoclonic Epilepsy of Infancy, also known as Dravet syndrome, a life-threatening epileptic disorder with no known effective treatment.

Clare Carey must stay within arm's reach of her daughter, Alexis, at all times to prevent her from falling. Alexis suffers from sudden and frequent seizures that her parents hope medical marijuana can control. - CARISSA WOLF
  • Carissa Wolf
  • Clare Carey must stay within arm's reach of her daughter, Alexis, at all times to prevent her from falling. Alexis suffers from sudden and frequent seizures that her parents hope medical marijuana can control.

Most kids with Dravet syndrome progressively worsen as they grow. Many lose developmental gains as daily, and sometimes hourly, seizures fracture their days and pharmaceutical cocktails fog their minds, dull their emotions and turn their bodies toxic. Sometimes a seizure overwhelms their small bodies and they die.

Parents of children with the disorder often brace for a goodbye every time a seizure hits. Do-not-resuscitate orders, medically-induced comas, feeding tubes and wheelchairs become part of their children's health care plans.

But zip codes changed all of that for some.

Clare Carey and Paige Figi once shared the same story. They both watched Dravet syndrome consume their daughters. Swimming, playing games, riding bikes and even laughing—the stuff of childhood—existed only in hopes. The biggest difference in their stories was their zip codes, then the story changed for Figi's daughter, Charlotte, when Colorado allowed medical marijuana to become a part of Charlotte's treatment.

Charlotte had her first seizure at 3 months old, and they kept coming. The seizures worsened and, within months, up to 20 seizures gripped her infant body every day. Her parents had pushed for answers from the first seizure. Like the Figis, many parents begin a waiting game in the early days. They're told the seizures may stop; their baby may outgrow the unexplainable; or, maybe, with the right anticonvulsant cocktail, the seizing may remit or at least diminish.

Charlotte grew, and the seizures grew with her. Before her first birthday, the seizures became a kind of clock: five seizures every 30 minutes.

"She was labeled with intractable epilepsy," Paige said.

Paige read that while cannabis could not cure seizures in patients with similar disorders, it had been shown to dramatically reduce them. That was good news, but first she and her husband had to confront their ideas about marijuana.

"We're a military family," she said.

Paige's husband, Matt, personified the military man. Straight-laced and law abiding, he followed rules to the letter—and he definitely never, ever smoked marijuana.

"We were very conservative," Paige said.

But Charlotte was very sick.

"We were saying our goodbyes to her."

Paige and Matt turned into the medical students and health care advocates that many parents become when their children face a devastating illness. They scoured the Internet, dug into medical journals, quizzed doctors and connected through Facebook with others dealing with similar issues. Along the way, medical marijuana kept popping up.

Matt was the first to suggest they try it and with a Colorado zip code, access wasn't a problem.

The results were almost instant.

"There were 300 seizures she didn't have that first week," Paige said.

Almost immediately, Charlotte began a reawakening.

"I'm meeting her again for a second time," Paige said.

Dr. Sanjay Gupta documented Charlotte's dramatic turnaround for a CNN documentary, Weed, in which the physician admitted his skepticism about the efficacy of medical marijuana. Gupta later wrote that the public had been "systematically misled" about the benefits of marijuana. Gupta's documentary reported on the low-THC, high-cannabidiol marijuana strain now dubbed "Charlotte's Web," which the Figis credited with the near-miraculous recovery of their daughter.

A representative of Realm of Caring, the Colorado nonprofit that supplies the strain, said the documentary prompted thousands of viewers to call with questions and requests to be next in line to try Charlotte's Web. Many landed on a waiting list that topped 12,000 or found themselves caught in a tangle of state and federal laws that restrict medical access to marijuana according to geography.

The Careys watched Weed and saw their own experiences.

The first pages of Charlotte's story read like Alexis'. Both girls entered the world as healthy babies, but after epilepsy entered in infancy and the seizures intensified to hundreds per week, the girls' development stalled: they struggled to gain weight, create words and learn as seizure after seizure set them back.

But there was Charlotte on CNN, playing like a typical kid.

The Careys wondered, could Charlotte's Web work for Alexis? Idaho law gave them only two ways to find out: They could move or break the law.

"It's just ludicrous that people would suggest that [we move]. Why not change the law?" Clare said.

Six years ago, the Careys called Salt Lake City home. Then Michael, landed a job interview in Boise. While he interviewed, she spent the day touring Boise.

"I wandered around the downtown area and just loved it," Clare said.

Michael got the job, and the couple settled in.

"We just love Boise. Idaho is beautiful," Clare said. "We can't just give up a job and move to Colorado."

Medical Refugees

Kim Clark is one of thousands who have made a medical pilgrimage to Colorado, seeking treatment for her son, Caden.

"We came out here thinking, 'Oh, gosh. Let's see what these crazy people are trying in Colorado—the crazy pot people,'" she said. "That's exactly what we thought of people in Colorado. So we thought, 'Let's go see what the crazy pot people are doing, because what else did we have? Who are we if we don't do it? Who are if we don't get him this treatment?" Kim asked.

That question split the Clarks in half. Kim would move with her two youngest sons to Colorado. Her husband and teenagers would stay in Atlanta, Ga.

"This was a very, very hard, very emotional decision for our family," Kim said of her decision to move half of the family so that her son could access the medicine they saw as a last hope.

"My children are growing up without their father. How is that OK? We are not divorced. We are not separated. We are very much married. We are a family. And we are living like a divorced couple," she said.

"What I can tell you is the two oldest boys are struggling. They miss their brother. It's hard when a 13-year-old cries. He wants to go [back to Atlanta]. He gave up everything," Kim added.

In March 2014, 11-year-old Caden received his first dose of Charlotte's Web—a low-THC and non-psychoactive cannabis strain—as an oil-based tincture.

Within a couple of hours after the first dose, Kim noticed something different about her son: The frequency of little tics, twitches and spasms that had become near-constant features in Caden's seizure-filled life became fewer.

"He had never had a seizure-free day since he was 2 months old. Then, after a week of being on cannabis, we finally had our first seizure-free day," Kim said. "After one 24-hour period of not seizing, I started screaming, literally, 'This is working! This is happening!' I was in shock. After 10 years, we had a seizure-free day. Just one day changed everything for me. Then we had two days and three and four."

Their Facebook friends started counting the days with them. Five, six...

Caden experienced a seizure on the sixth day, but it was different: It came and went in near isolation, and hundreds of seizures didn't follow in its wake.

"He still struggles; he still has breakthrough seizures," Kim said. "The miracle is that he is in double digits. We were never supposed to see 2 years old. We had a lot of 'nevers' with Caden. He was never going to walk, he was never going to talk and he was never, ever going to have seizure control. I'm getting to know Caden in a way I never have before."

Many of those firsts may also come with some lasts.

"We are forced out of our homes to seek this treatment, this life-altering treatment. So we do really feel like refugees," Kim said. "Medical treatment for our children is now being determined by our zip code and that seems very anti-American to me. That just doesn't feel like our country to me."

Thousands of families are trapped by the nation's patchwork of medical marijuana laws.

"We're ready to do things with [Caden]," Kim said. "Just little things. I would love to have Caden see the beach. I would be a federal drug trafficker if I did that."

A drive to the Oregon coast would mean a tour through Idaho and entry into a jurisdiction where laws would label Kim a drug trafficker and a danger to her children. The borders confine and drive a wedge between family Kim longs to visit with Caden. Typically a straight-talker, Kim pauses when she mentions her sick father. She wants say her goodbyes, but she can't leave Colorado.

"I'm probably going to lose my father while I'm sitting in Colorado," Kim said. "There are choices that we shouldn't be making. I want to be near my father."

Uneven marijuana laws can mean the difference between keeping families intact, holding onto a job and a community, accessing medicine or breaking the law. During the 2014 Idaho legislative session the Careys pursued a third option to secure medical marijuana access for Alexis: They decided to stay in Idaho and fight.

A Sound Decision

Between prolonged hospital stays, doctor appointments and the 24/7 job of raising three children, the Careys work the phone. They're calling lawmakers, lobbyists, Colorado parents, and moms and dads who know what it's like to have their days punctuated by dozens of epileptic seizures. It's a part-time political job the family never asked for and one they don't have time for. Clare spends much of her time sticking close to her oldest daughter.

"I just follow her," she said. Alexis could fall from the onset of an epileptic seizure at any moment.

Anticonvulsant medications can offer a degree of relief and for patients in 29 states, it's their only option. Lethargy, developmental delays and liver damage are among the side effects of some of the drugs commonly prescribed to treat seizure disorders. The side effects of cannabis typically include sleepiness and increased hunger.

"I'll take that over liver failure," Clare said, noting that children with Dravet syndrome usually struggle to get a full night of sleep and put on weight.

"We're just asking to make a sound decision and lawmakers don't want to make medical decisions, either," she said.

The Careys' quiet, behind-the-scenes lobbying efforts came on the heels of a 2013 Senate concurrent resolution that stated that Idaho should never legalize marijuana for any purpose. Sides dueled in committee, but the bill gained overwhelming support with mostly Republicans voting to keep marijuana—in any shape or form—outside of Idaho.

The Careys heard a similar message in 2014.

The Family Waiting Room

"We were told that we can't do this on election year and we'll just have to wait. While two [Idaho] children [with Dravet syndrome] have already spent part of the summer in the PICU [pediatric intensive care unit]," Clare said.

Parents fighting for passage of legislation granting access to medical marijuana for children like Alexis boast on Facebook of the successes they've experienced using cannabis to treat an array of seizure disorders. They also note more somber news. They share word of children who have passed away following a catastrophic seizure. Around the same time a seizure landed Alexis in the hospital and put her in a nearly week-long coma, a girl about Alexis' age, who shares her diagnosis, died in Wisconsin. Her parents were actively lobbying the state of Wisconsin to pass legislation to approve the use of medical marijuana.

"It really is about time. Families are being [separated] and children are dying. They don't have time so the time is now," Serra Frank, founder of Northwest international marijuana advocacy group Moms for Marijuana, told Boise Weekly.

The kids were in bed and Frank, the full-time mom and part-time patient, could wear the activist hat. On the night she spoke with BW, Frank, now leader of New Approach for Idaho, a newly organized marijuana legalization advocacy group, spoke of marijuana legalization and family matters. She can't seem to unwind the two.

"There are a lot of families that are moving out of state," Frank said.

A few years ago, she moved to Oregon so she could swap the daily doses of morphine—which she used to control the pain of interstitial cystitis, a Crohn's-like inflammatory disease—for medical marijuana.

"My life was better," she said. And she could parent better.

"I didn't feel like a zombie... I was a worse parent when I was on pharmaceuticals," Frank said, but, she added, "My entire family lives in Idaho. Everyone I know and love lives in Boise."

Alexis Carey has been prescribed dozens of medications and special diets in an effort to control her seizures with little success. Medical marijuana is one of the last medications that Alexis has not tried. - CARISSA WOLF
  • Carissa Wolf
  • Alexis Carey has been prescribed dozens of medications and special diets in an effort to control her seizures with little success. Medical marijuana is one of the last medications that Alexis has not tried.

Family ties brought Frank back to Idaho, but the relief she found in Oregon propels her to bring Idaho laws in line with eight other western states that have fully or partially legalized marijuana use—only Idaho, Utah and Wyoming still bar any use or possession of the substance.

Frank knows popular opinion can make or break her cause, and she courts everyone from the parents of sick kids to the conservative retirees and avowed anti-pot prohibitionists.

She counts her new organization's more than 25,000 Facebook likes as a measure of hope: New Approach has already out-liked the now defunct medical marijuana advocacy group Compassionate Idaho by thousands. She keeps coming back to a 2010 Boise State University poll that found 74 percent of Idahoans support the legalization of medical marijuana. Frank wants that majority to sign a petition for a 2016 ballot initiative and thinks reason can get the other 26 percent to come around.

New Approach organizers gathered at a Boise pizza parlor in December 2014 to perfect their arguments and even sling a few religion angles into their pitches, pointing to Bible passages they interpret as supportive of medical marijuana.

"It's in the Bible," organizer Dana Wilson told the crowd.

Frank tries to pull the mainstream into the grassroots cause and, in a recent press release, she boasted of support among Latter-Day Saints with a headline that read, "Idaho Mormon Family Begging for Medical Marijuana."

The headline referred to Bryce Bunderson of Montpelier, Idaho—dad, Mormon and southern Idaho rancher.

"We were trying to decide whether to cut part of my son's brain out," Bunderson said. "The sad thing is that it doesn't have to be that way. Isn't [marijuana] worth trying?"

He said he has a lot of stereotypes to challenge and minds to change as he joins New Approach and its push for full marijuana legalization.

Lawmakers who backed the 2013 anti-pot resolution told BW that they sympathize with the plight of the Careys and even see a need to legalize marijuana for medical use. But the ins and outs of regulating the medicine get tricky, some say, and they have constituents to answer to.

"I am not a supporter of legalizing marijuana. I am somewhat sympathetic for medicinal use," said Idaho Falls Republican Sen. Dean Mortimer, who echoed the sentiment of many of his Republican colleagues.

"The difficulty is in the details and how and when," he added. "I have received a few emails from constituents supporting legalization of marijuana. I have had more input from law enforcement against it."

Constituents sent Nampa Republican Sen. Todd Lakey a different message.

"I do not favor legalization of marijuana. Most of my constituent communications on the issue take the same position," he said.

The Careys are daunted by the "no" vote of the 2013 anti-pot resolution, as well as former Moscow Republican Rep. Tom Trail's failed attempt to get a medical marijuana bill past committee in 2011. But, for a moment last summer, Clare drew a sigh of relief as news broke of the introduction in Congress of the Charlotte's Web Medical Hemp Act of 2014. The bill proposed passage of prohibition exemptions for non-psychoactive, low-THC, high-CBD strains of hemp for medical purposes. Named after Paige Figi's daughter, Charlotte, the bill would have effectively ended the Careys' fight to change state law, allowed the Clarks to reunite as a family and lifted the travel restrictions for Colorado families that relocated to the state as marijuana refugees.

When Clare heard news of the bill's introduction and backing by 38 co-sponsors, she called BW. This time her voice sounded lighter and it quickened as she spoke.

"This is huge. It's a game changer," Clare said. "This would give people immediate access."

For a moment, the 2015 legislative session and all that could follow looked different for the Careys. They could bypass the Statehouse for the park. Maybe Clare could stop the car instead of driving past Lucky Peak in the summer, she thought. Maybe all the kids could even swim.

The 2014 congressional session moved forward, Paige lobbied Congress, patients and parents wrote letters and the legislation didn't budge. When Congress adjourned, the bill remained where it started and the Careys returned to counting their legislative allies.

BW surveyed Idaho lawmakers who offered a continuum of positions on medical marijuana, with a handful reporting they'd say "no" to any medical marijuana bill while a near equal number of bipartisan legislators said they'd consider a proposal.

"Why won't we, at least, seriously discuss these possible alternatives to zombie-like medications, brain surgeries and invasive implanted electrical stimulation devices with little to no relief of their symptoms?" said Ketchum Democratic Sen. Michelle Stennett.

Others said they're willing to listen.

"There's a lot of education that the proponents need to do in order to move legislation like that," House Speaker Scott Bedke (R-Oakley) said. "I think that the Legislature will listen. I think that we'll have an open mind and listen."

Wishful Thinking

"This is a hot button topic," said Boise neurologist Robert T. Wechsler. "There are amazingly strong opinions either for or against CBD that are out of proportion with the available data. What that tells me is that there are a lot of emotions and a lot of politics playing into these positions."

Wechsler tries to wade through all of those emotions and ground the medical marijuana debate in science. As a specialist in epileptic disorders, he often sees patients seeking medical marijuana. As an Idaho physician he can't do much more than keep his eyes on the research, which comes in volumes and often validates the efficacy of medical marijuana in treating a variety of conditions. Studies do note the limitations of medical marijuana, often citing the IQ points teens tend to lose when experimenting with the drug. Meanwhile, dozens of other studies reveal a high success rate and anecdotal reports show success rates as high as 70 percent. That's on par with what Realm of Caring sees with its patients receiving Charlotte's Web.

Wechsler looks at those studies with the skepticism of a scientist. Marijuana's Schedule I controlled substance status restricts the kind of research that can be conducted on medical marijuana, and many reports come from anecdotal evidence or studies on mice.

In April 2014, the American Academy of Neurology issued guidelines that called for more research on medical marijuana, noting that marijuana could offer relief from several illnesses.

"Cannabinoids should be studied as other drugs are, to determine their efficacy, and when evidence is available, should be prescribed as other drugs are," stated the guidelines.

The guidelines stem from the review of 34 studies that presented evidence for the use of marijuana in treating a variety of neurological disorders. The review also highlights the need for more high-quality studies of the long-term effectiveness and safety of medical marijuana in the treatment of neurologic diseases.

"The data just isn't great. There have been a bunch of small studies. There have been individual case reports," Wechsler said, though he pointed to an abstract presented at a December American Epilepsy Society conference that found a 31 percent success rate among epileptic patients who used CBD—a rate that's comparable to conventional medications. But he said one subset in the study had a much higher success rate: Families that uprooted their children to Colorado to try CBD saw a 51 percent success rate. Wechsler credits wishful thinking, which could have a kind of placebo effect.

Still, Wechsler sees a place for medical hemp and marijuana in treatment plans. Every drug has its successes and each person responds differently to every drug. Sometimes a conventional therapy works, sometimes it doesn't. Sometimes parents try every drug available, special diets and even undergo brain surgeries to halt seizures. Sometimes they all fail.

"It's in that realm that CBD becomes of interest," Wechsler said.

"If the only choice was [medical marijuana] or sit at home having seizures after you've tried everything else, absolutely, try everything," he added. "But do it in an informed way."

It's in that realm that the Careys want to give CBD a shot. And the Careys—a pathologist and a physical therapist—know medicine. They know medical marijuana may or may not work. But it's more than worth a shot, Clare said. They've tried everything. Marijuana offers the family hope.

"It could be lifesaving. Any one of Alexis' seizures could be life-threatening," she said. "It [medication] should all be available. We didn't have to go to the Legislature to ask for the five medications that Alexis is on. ... We're just asking to make a sound decision."

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