Pubdate: Mon, 09 Sep 2013
Source: Standard-Examiner (UT)
Copyright: 2013 Ogden Publishing Corporation
Author: Antone Clark


WEST JORDAN - A Utah mother whose 11-year-old son has severe epilepsy 
is helping to launch a legislative initiative to legalize a liquid 
form of medical marijuana in the Beehive state, which may put a new 
face on the issue.

The face will be of children who could potentially be helped by a 
strain of the drug, not of unkempt potheads who roll their own weed.

Jennifer May, of Pleasant Grove, believes a hybrid form of cannabis 
offers hope to patients, such as her son, who suffer from Dravet 
syndrome, which can trigger hundreds of seizures a day for its 
victims and limit the life expectancy to 18 years or fewer. Her 
family currently spends more than $75,000 a year on medication in an 
effort to provide some relief and hope for their child in dealing 
with his epilepsy.

Annette Maughan, president of the Epilepsy Association of Utah, said 
there are at least 30 families in the Beehive state that would be 
affected dramatically by access to the drug. There are more than 
100,000 Utahns overall who have epilepsy, she said.

Currently, a form of medical marijuana is legal in 18 states. Under 
Utah law, possession of one ounce of marijuana can carry a sentence 
of up to a year in jail.

Maughan and May said the legislation they hope will run in the next 
legislative session will be crafted so narrowly, it may offend groups 
who want the drug legalized for recreational use. They envision the 
drug being available from only two pharmacies, with very tight 
parameters on who could potentially access it. They have declined to 
say who will sponsor the legislation, but remain convinced that, with 
education, the issue will move forward and can be approved in the next session.

Maughan said two of the key ingredients in the cannabis plant - 
marijuana is a slang word used to describe the plant - are CBD, which 
has medicinal value, and THC, which is the psychoactive ingredient. 
Recreational marijuana has five or six parts THC for every half part 
of CBD. The liquid form used for Dravet patients in Colorado has 15 
parts CBD and one part THC.

"You could go to the high school and get better weed than this drug 
we're using," May said.

The unique derivative of cannabis May and Maughan want epilepsy 
patients to have access to is only available from one organization, 
Realm of Caring, based in Colorado Springs, Colo. Maughan said the 
unique plants can't be grown from seed; they have to be cloned from 
other plants.

"It's the most promising medication we've heard of. It has the least 
negative side effects. It's not a miracle drug, but it has hope," May said.

Known as "Charlotte's Web," the drug helped one Colorado girl who was 
experiencing 300 seizures a week - and not walking, talking or eating 
- - transition to a life where she now has one seizure a week and is 
beginning to learn to ride a bike and live life more fully, May said.

May and Maughan recognize the issue in front of them in trying to 
legalize any form of marijuana. They say they have targeted lawmakers 
who will be the hardest on the issue, to approach first. Maughan said 
they will systematically approach legislators in an effort to pick up 
momentum for the issue.

"It's a snowball once you get the true word out there," she said.

She said most neurologists they have contacted as part of their 
efforts are also on board, because they have heard of Charlotte's Web 
from Colorado.

Maughan said the Epilepsy Association doesn't have years to invest in 
trying to get the drug legalized.

"If it does take years, our children will be gone," she said. 
Regarding eventual passage, she said, "It will happen."

"Right now all we care about is our kids and this one medication. The 
point is people will always say, 'I had no idea you could use 
cannabis and not be high,'" May said. "This is not a fun drug, it's 
just a medicine."

May said the issue of persuading lawmakers in a red state to consider 
a form of medical marijuana is not as daunting as it sounds.

"We quite frankly aren't concerned," she said. "It's just a matter of 
contacting them and working with them."
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MAP posted-by: Jay Bergstrom