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Josh Weaver snaps his daughter Amelia’s helmet in place before she plays by walking back and forth from her bedroom to the living room. The helmet protects her if she were to fall while having a seizure. Bob King | Forum News Service

Medical marijuana bill spurs hope, draws opposition

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John Lundy

Forum News Service

HIBBING — The first time Amelia Weaver had a seizure, at 18 months, doctors said it was likely the consequence of a high fever.

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Keep an eye on her when she has a fever, doctors told the Hibbing infant’s parents — Angie and Josh Weaver — but it’s probably nothing to worry about.

Amelia didn’t have her next seizure until a year later. After that, she had so many that her mom stopped counting after she got to a thousand.

Now, age 7, Amelia has between 20 and 30 seizures a day, every day, according to her parents.

Once a normal child who could walk and say her ABCs and count to 20 at age 2½, Amelia has lost most of that. Unable to communicate verbally, she makes a cooing sound as her parents hold her or read to her and little sister Penelope, 3. She can feed herself finger food, but can’t handle a fork or spoon. The dark-haired little girl is able to walk, but does so aimlessly and hyperactively. Angie and Josh’s modest ranch home is sparsely furnished because of Amelia, and they watch her closely. Still, when Amelia isn’t placed in her specially designed stroller or being held, she wears a helmet to cushion her many falls, some of which are caused by one type of seizure.

Amelia has Dravet (pronounced draw-VAY) syndrome, a rare and catastrophic form of epilepsy that attacks young children. Most antiepileptic medicines aren’t recommended for Dravet syndrome; the few that are haven’t helped Amelia.

“We have all but exhausted our options,” said Angie Weaver, 32.

But the Weavers have a glimmer of hope.

They’ve learned about it through TV shows and newspaper articles and especially through the online community of parents who have children with the same condition. Some of those parents tell of a treatment that has made an enormous difference in their children, allowing them to bring their seizures under control and to start to regain lost functions.

But the treatment is illegal in Minnesota. It’s a medical form of marijuana, taken as a pill or in an oil solution.

Amelia’s story, and those of people suffering with cancer, glaucoma, debilitating pain and other conditions, led state Rep. Carly Melin, DFL-Hibbing, to author legislation that would legalize marijuana for medical uses in Minnesota.

Melin and other proponents say the bill would give doctors a legitimate tool for patients with certain conditions who don’t respond to other treatments, and that it minimizes side effects caused by other drugs.

Opponents — including law enforcement organizations — argue that legalization would open the door to more abuse of a dangerous drug.

“I say this not only as a police chief but as a dad and a community member, I really believe this is the wrong way to go,” Duluth Police Chief Gordon Ramsay said.

Vetoed in 2009

The two sides draw different lessons from the 20 states, plus the District of Columbia, that already have legalized marijuana for medical purposes. (Two of those, Colorado and Washington, have legalized recreational marijuana use as well, although sales have yet to begin in Washington.) In the earliest states, legalization goes back more than a decade.

The Minnesota Legislature has approved medical marijuana legislation before — in 2009, when a bill authored by state Rep. Tom Huntley, DFL-Duluth., passed in both Houses only to be vetoed by Republican Gov. Tim Pawlenty.

It’s possible this year’s bill could face the same fate, this time from Democratic Gov. Mark Dayton.

Spokesman Matt Swenson said Dayton would sign a medical marijuana bill, but only if it had broad law enforcement support.

Such support seems doubtful. The Minnesota Law Enforcement Coalition, representing five statewide organizations, is as ardently opposed this year as it was in 2009. Among the groups is the Minnesota Sheriffs Association, whose executive director is Jim Franklin. Asked if there were any version of a medical marijuana bill his group could support, Franklin responded: No.

Melin said she met with state law enforcement leaders in November, along with state Rep. Dan Schoen, DFL-Cottage Grove, a co-author of her bill. Schoen is a police officer who served five years as a drug task force undercover officer.

Melin said she left the meeting feeling frustrated.

“There’s absolutely nothing we could do to get them to change their position,” she said.

Police opposition

Indeed, the law enforcement coalition last year updated two lengthy documents it produced in 2009 offering both general opposition to legalizing medical marijuana and arguments against the specific bill.

Ramsay will step in as president of the Minnesota Chiefs of Police Association, one of the coalition members. He said an especially alarming provision of the bill would allow a caregiver or patient to grow marijuana if there was no dispensary within 15 miles of where the patient lives.

The legislation allows up to 12 marijuana plants to be grown, which the position paper says could produce 30 to 108 pounds a year of usable marijuana.

“This proposed legislation would authorize thousands of individuals in Minnesota to begin cultivating marijuana, worth hundreds of dollars if illegally sold on the street, in their homes, garages, storage sheds and back yards,” the law enforcement coalition said.

But Heather Azzi, political director of the pro-legalization group Minnesotans for Compassionate Care, called the law coalition’s numbers “vastly overstated.”

Twelve plants is the low end of what a patient would need to maintain a steady supply, she said, and federal data indicate 12 plants could be expected to produce a total of only around 3 pounds per year, she added.

Moreover, Azzi said, the proposed Minnesota law would make it a felony to distribute medical marijuana to someone who isn’t registered to use it.

“The implication that if typical patients manage to produce more marijuana than they need they will become illegal drug dealers is offensive,” Azzi wrote in an email.

Treatment for acne?

Opposition doesn’t come solely from law enforcement. The American Medical Association calls for research and development of cannabinoid-based medicines, spokeswoman Kelly Jakubek said, but it doesn’t endorse legalization or state-based medical marijuana programs.

Minnesota’s former drug policy director is also opposed.

“In some states with medical marijuana, such as California, there are over 400 conditions for which one can receive a prescription for marijuana, ranging from cancers and other diseases to headaches and hangnails and acne,” said Carol Falkowski, now director of Drug Abuse Dialogues, a Minnesota-based business that delivers educational training workshops about drug abuse.

But the Minnesota Nurses Association has supported medical marijuana bills, spokesman Rick Fuentes said, “because our nurses have an ethical obligation to advocate on behalf of their patients.”

And the Minnesota law would be much more restrictive than the laws in some other states, Azzi said, strictly limiting the conditions for which marijuana would be allowed.

The law enforcement coalition disagrees, comparing one of those conditions, “severe, debilitating pain,” to the “serious pain” listed under the Colorado law. It says 94 percent of those applying for medical use cards in that state do so for “serious pain.”

Azzi countered with Rhode Island, which she said has a similar definition to the Minnesota proposal. It has fewer than 6,000 patients enrolled, she said, less than 0.6 percent of the state’s population.

The decision about treating patients with marijuana for pain or anything else should be trusted to doctors, Melin said.

“It’s just hard for me to imagine that we’re going to allow law enforcement to continue to make these medical decisions when it should really be left up to the medical community,” she said.

‘Zero quality of life’

The Weavers say they wish more study were available of the Colorado-grown form of medical marijuana they’d like for Amelia. But they’re in a desperate situation.

“She has zero quality of life right now, and she is suffering every day,” Angie Weaver said.

When considering the uncertainty of the future with that drug, they balance it with the present reality of the drugs Amelia already is taking.

“Let me tell you the side effects of her medications right now,” Angie Weaver said. “Death. Blindness. Liver damage. … Anticonvulsant medications are pretty much some of the strongest medications that you can give with the strongest side effects.”

The Weavers were dubious when first told about the possibility of treating Dravet syndrome with medical marijuana. But then one of Josh Weaver’s colleagues at Hibbing Community College told him about Charlotte Figi. The video they watched showed a 6-year-old girl with short, dark hair like Amelia’s. Charlotte’s mother, Paige Figi, explained in the video that Charlotte had been diagnosed at 2½ with Dravet syndrome, and every possible Food and Drug Administration-approved medication had been tried.

Charlotte’s symptoms were, if anything, even more drastic than Amelia’s.

In the first seven days after taking the medical marijuana, Charlotte was seizure-free, her mother said. Over the next nine months, she went from having 300 seizures a week to zero or one.

Watching it, the Weavers were transfixed.

“The little girl looks like Amelia; the story sounds the same,” Josh Weaver said. “It’s like watching our life, happening somewhere else.”

The difference is that Charlotte Figi’s somewhere else is Colorado. The medical marijuana compound she takes, cultivated to be extremely low in the THC that gives marijuana its psychoactive effects, is grown there.

The Weavers don’t want to move to Colorado.

Josh Weaver, 33, likes his job in the information technology department at the community college, and the health insurance is good, they said. Both grew up in Hibbing, and their family, friends, and their church are here. Having a child who has multiple seizures means most babysitting options aren’t available, but they can call on their parents.

In Colorado, all of that would be gone.

But if the medical marijuana bill isn’t passed and signed by the governor this year, the Weavers say they’ll move to Colorado.

“I realize she’ll never live a normal life, like her sister,” Josh Weaver said of Amelia.

His hope from medical marijuana, he said, is just to get “to the point where she can sit down and read a book with me, or we can go to the park and play or she doesn’t have to walk around with that helmet on. Just something that would allow her to progress.”

“We just want safe, legal access to a medicine that can help our daughter,” added Angie Weaver.

‘It goes too far’

Melin said she’s hopeful about the bill getting through the Legislature this year. It has the maximum number of co-sponsors in both the House and the Senate, and sponsors include Republicans as well as Democrats.

She’s less optimistic about law enforcement and the governor. Dayton told The Associated Press late in December that he wanted to see more collaboration between the bill’s proponents and the state’s law groups. Because of that, Melin, Schoen and state Sen. Scott Dibble sought another meeting with law enforcement.

The response from Dave Pecchia, the coalition’s chairman, suggested Jan. 20 as a possible meeting time, but added that such a meeting would be pointless.

“There are really no provisions of the bill that we can support, so a review of the bill seems unproductive,” Pecchia wrote Melin on Jan. 8.

Ramsay said he could support some way to provide the medication the Weavers say they need for Amelia. But Melin’s bill goes far beyond that, he said.

“In their bill, if you can grow your own? No,” Ramsay said. “It goes too far. Way too far.”

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