Pubdate: Sun, 19 Jan 2014
Source: Duluth News-Tribune (MN)
Copyright: 2014 Forum Communications Co.
Website: http://www.duluthnewstribune.com/
Details: http://www.mapinc.org/media/553
Author: John Lundy
Cited: Minnesotans for Compassionate Care http://www.mncares.org/
Bookmark: http://www.mapinc.org/mmj.htm (Marijuana - Medicinal)
Bookmark: http://www.mapinc.org/pot.htm (Marijuana)

HIBBING COUPLE LOOK TO MEDICAL MARIJUANA TO IMPROVE DAUGHTER'S LIFE

The First Time Amelia Weaver Had a Seizure, at 18 Months Old, Doctors
Said It Was Likely the Consequence of a High Fever.

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

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 1,000.

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 ABC's and count to 20
at age 2 1/2, 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 she 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 dra-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 -- 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 chambers of the Legislature 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 about 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 also is 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 21/2 with
Dravet syndrome, and every possible FDA-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 go.

"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 to 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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MAP posted-by: Matt