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So sick kids can get medical marijuana, families flee Kansas and Missouri


Kansas City Star (MO)

04-21-14

April 20--Otis Reed will soon move to Colorado so he can get marijuana every day.

No hurry. One night last week, he happily chomped on string cheese and broccoli. Well, spit broccoli out anyway, the florets landing on the toy frog in his lap.

Otis is 2. He and little ones like him have become the new face of America's discussion about marijuana. Forget Bill Maher and Willie Nelson for now -- that's old weed thinking.

Now it's about kids who suffer hundreds of seizures every day because of epilepsy and other neurological disorders. A growing number of health professionals, buoyed by new research and positive results, say medical marijuana, specifically an oil extract called Charlotte's Web, can help those children.

The big question is, why do these families have to move to Colorado to get it? Even the national Epilepsy Foundation says the treatment should be available everywhere. It's made in Colorado Springs, but if people bring it home to a non-medical marijuana state, such as Kansas or Missouri, they could be arrested.

Margaret Gedde, a doctor in Colorado Springs, blames people clinging to a decades-old resistance right out of "Reefer Madness." And until change comes, families known as "medical marijuana refugees" are streaming to Colorado.

"As success stories get out and word spreads, they are coming here from everywhere," said Gedde, a pathologist who has encouraged dozens of families to make the move from as far away as Florida.

"We see them every day."

That's what Otis' mom and dad are doing. Otis, who turns 3 in June, can't walk or talk. In February, he broke a leg because constant medication weakened his bones.

But he smiles. His life is what he knows.

Kathy and Ryan Reed have tried everything to help him. Various doctors, different hospitals, ketogenic diet, two pages of drugs. Nothing worked. Then they heard about Charlotte's Web. So the family is leaving Baldwin City, Kan. -- and jobs and family -- in May for Colorado Springs.

"Anybody in our shoes would do the same thing," Ryan Reed said.

Through the Internet and social media, the refugees find each other. They exchange stories, compare notes and help with one another's kids. A woman who moved last year from Gladstone with her daughter said she has more than 400 families on a Facebook page.

It could soon be the faces of children such as Otis Reed and June Jessee, a toddler in St. Louis, that legislators will see on large video screens in chambers as laws are challenged in the 29 states that do not allow medical marijuana.

And of course, Charlotte Figi, a little girl with a genetic disorder called Dravet syndrome that causes catastrophic seizures. She was so sick -- her heart stopped twice -- that her parents signed a "do not resuscitate" order.

Then they tried the marijuana oil -- and it worked. She is the Charlotte of Charlotte's Web.

"Marijuana can end the suffering of children with seizures," Gedde said by phone from her office. "Who wants to be against that?"

Critics argue that a medical marijuana law is just a steppingstone to statutes allowing recreational use. They say that it would make pot easier for teens to get and that it would lead to harder drugs. They also point to all the approved drugs that are available.

The big "no" comes from the U.S. Food and Drug Administration, which continues to say that marijuana "has a lack of accepted safety for use under medical supervision" and that "no sound scientific studies supported medical use of marijuana."

But the American Medical Association, along with other health organizations, recently called for more research.

Proponents such as the refugee families want people to look at a website called Face of Cannabis, at faceofcannabis.wordpress.com. It shows their children and tells their stories.

Ryan and Kathy Reed think medical marijuana will be legal everywhere in a few years, but they can't wait. Otis needs help now, said Kathy Reed, who works at the University of Kansas.

"It's just unfortunate that we have to pack up and leave our lives to go get medicine that may save my son's life," she said.

------

These marijuana refugees don't rival in numbers the dream chasers of the California gold rush or the downtrodden who migrated west during the Great Depression.

But they have one thing those earlier seekers lacked. Or, rather, they lack something the earlier ones possessed.

"We don't have a choice," said Matt Jessee, whose 2-year-old daughter, June, suffers daily seizures from epilepsy. "Really, what else can you do when it's your child? If you think it could help, don't you have to go?"

He is wrapping up law school and works for the Bryan Cave legal firm in St. Louis. His wife, Genny, recently testified before a Missouri House committee considering medical marijuana.

Matt Jessee blames federal drug policy that continues to categorize marijuana as a Schedule 1 drug, which means it has no accepted medical use.

He rejects criticism that asks, why try medical marijuana when we don't know whether it will work? He said his family didn't know whether the other medications would work either, and they didn't. One, he said, had a 3 percent chance of working, and a possible side effect was death.

"We can't wait any longer," he said of the family's move to Denver. "Sure, it's a tough move. All our family is here, and we don't know anybody out there. But every day June has seizures delays her development, so we can't wait any longer.

"This is about hope."

Philip M. Gattone, president and chief executive officer of the national Epilepsy Foundation, along with board chairman Warren Lammert, said parents need to have the legal option to get medical marijuana for their children.

The current situation is not acceptable, they said.

"Families looking to access medical marijuana as a treatment are facing terrible decisions," Gattone said. "One parent may move across the country to live with a child to seek this treatment. Other families may uproot entirely, including leaving their job, to move where they can access CBD oil," referring to Charlotte's Web.

The thick, amber-colored oil is made by a dispensary in Colorado Springs. The process renders the oil high in cannabidiol, or CBD, a chemical in cannabis thought to have medicinal properties, but removes most of the tetrahydrocannabinol, or THC, the psychoactive part of pot that gets users high.

The treatment, sometimes administered by a drop under the tongue, is not covered by insurance, but financial help is available. A typical month's supply runs about $300.

Orrin Devinsky, a professor of neurology at New York University and director of the school's Comprehensive Epilepsy Center, said he supports the treatment and the country's overall momentum toward medical marijuana.

"If I were Charlotte Figi's parents and lived in Colorado, I would have done exactly what they did," Devinsky says on the Epilepsy Foundation's website. "And as a doctor, I would gladly prescribe marijuana products for many of my patients who failed existing therapies if it were legal in my state."

Jim Guthrie of Lawrence wishes Charlotte's Web would have come along when his daughter was younger. Julia is now 20. He remembers when her school wouldn't let her attend class unless she was in a wheelchair and wearing a helmet.

"All the seizures -- it was hell," Guthrie said. "Watching your daughter be tortured and being helpless to stop it.

"These families moving to Colorado -- they know the hell I mean. They're desperate for something to help their kids. I would go in a heartbeat.

"I want to be clear on that: I would break the law. When it's your child, it's a no-brainer."

Holly Brown and her daughter, Sydney, moved from Gladstone to Colorado a year ago. Her story is like the others' -- they tried everything, but nothing worked.

She said Sydney, 10, has shown remarkable improvement with the oil.

"I've seen incredible things," Brown said. "And not just with Sydney, but others I've gotten to know out here. Kids sitting up the first time, holding up their heads, saying their first words.

"Most of us just wanted help with seizures. But we're seeing improvement with cognitive skills and memory."

Legislation has been introduced in Missouri and Kansas. Proponents in Missouri think voters could see a ballot referendum perhaps within a couple of years. Polling, they say, shows widespread and growing support. Democrats and Republicans in the General Assembly have spoken in favor.

Genny Jessee, June's mom, doesn't understand why it hasn't happened yet and why a Missouri family must move to get help for a child.

"We've been through so much, and this is just something else we have to do," she said. "Just like others, our support system is here. Our family is here. June's therapists are here. So from that standpoint, it's very hard. But thankfully, Matt's firm has an office in Denver, so financially we can afford it.

"But some people can't, and that's not right."

------

Otis likes to swing outside. Likes the sun and the breeze.

Lots of both of those things are at his grandparents' place in a rural area of Baldwin City. The family moved there when Ryan Reed quit his teaching job so he could take Otis to doctor appointments and therapy sessions.

Kathy Reed needed to keep her job at KU for the family's health insurance.

Ryan's parents, Donna and David Reed, are glad to have them. They like to hear Otis giggle as he rolls on the living room floor. He's their only grandchild.

"They've been through so much and tried so many things," Donna Reed said one evening last week in the kitchen.

She and her husband fully support the move to Colorado.

"You'll do anything for your kids," said David Reed, who works at Baker University. "That's just how it is."

Ryan Reed will go out soon to find a place to live. At first, the plan called for his wife to stay here and work, but KU is now offering to let her telecommute for her job.

Ryan Reed said it's easier knowing they are not alone.

"Those of us doing this are learning from each other," he said.

His parents are already making plans to visit. Donna Reed said there might even be a move in their future, too.

David Reed nodded. Yes, he would go along. He looked toward his wife.

"It's looking like it's that or me staying here by myself."

To reach Donald Bradley, call 816-234-4182 or send email to dbradley@kcstar.com.

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(c)2014 The Kansas City Star (Kansas City, Mo.)

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