Pubdate: Mon, 30 Mar 2015
Source: Dayton Daily News (OH)
Copyright: 2015 Dayton Daily News
Contact: http://drugsense.org/url/7JXk4H3l
Website: http://www.daytondailynews.com/
Details: http://www.mapinc.org/media/120
Author: Lisa Bernard-Kuhn, WCPO 9 On Your Side

PARENTS MOVE FAMILY FOR MEDICAL POT

Daughter Suffers From Seizures Daily.

Couple Can't Wait for Ohio Voters to Decide Issue.

LIBERTY TWP.- Three-year-old Addyson doesn't understand why her 
favorite toys, books and everything she knows as home is packed away in boxes.

"When she has a seizure, we try to explain to her that 'this is why 
we're moving, we're going to get help for you and these are going to 
go away,' "said Heather Benton of her red-headed toddler who suffers 
hundreds of seizures a day from myoclonic epilepsy.

Heather and Adam Benton are joining the ranks of hundreds of U.S. 
parents who have moved across the country to secure medical marijuana 
for their children. The couple is packing up the last of their 
Liberty Twp. life and setting out to begin the 1,200-mile trek to a 
new home in Castle Rock, Colo., where a strain of medical cannabis is 
growing especially for Addyson.

The move is the culmination of nearly two years of planning, 
researching and waiting by the Bentons to see if marijuana will be 
legalized in Ohio. Efforts underway now could bring the issue to Ohio 
voters in November, but the Bentons said sticking around to see what 
happens isn't an option.

"We can't keep waiting and waiting to get relief for Addyson," said 
Heather Benton. "If Ohio gets on board, maybe we can come back."

This month, state officials signed off on an initial approval needed 
to place a proposal to legalize marijuana on the November ballot.

Now the group leading the effort, ResponsibleOhio, needs to collect 
about 306,000 signatures by July in order to take the issue to voters 
this year.

The proposal calls for allowing recreational pot use for individuals 
21 and older, and medical marijuana use for adults and minors who 
have parental consent.

If approved, the amendment would create a nonprofit medical marijuana 
dispensary system in Ohio, overseen largely by a to-be created 
Marijuana Control Commission.

That commission would have a role in creating the fee structure for 
the medical pot, which unlike marijuana sold for recreation use 
wouldn't be taxed, according to the amendment.

Also, the commission would be charged with crafting rules for 
regulating prescribers and ensuring that a system is in place to 
track just how much marijuana is sold for medical and recreation 
purposes, said Lydia Bolander, a spokeswoman for ResponsibleOhio.

"The idea is that most physicians will be able to use this as a 
viable treatment method and patients will have to have a pre-existing 
relationship with that physician," said Bolander.

Meanwhile, state legislators are also considering a bipartisan bill 
that would legalize cannabis-derived medications like those the 
Bentons are seeking in Colorado.

The proposal would allow certain doctors to prescribe an oil made 
from a strain of marijuana that is heavy in cannabidiol, or CBD, a 
non-pyschoactive component of pot, and low in tetrahydrocannabinol, 
called THC, the chemical that produces a high.

In Colorado, a strain known as Charlotte's Web has become the calling 
card for parents like the Bentons. The strain is named after a 
7-year-old girl who saw her seizures drop after taking the cannabis 
in an oil form.

"It's not something that's going to get her high," said Heather 
Benton. "We're not risking our daughter's life. We want to give her 
something pure, that's made from the earth and doesn't include 
chemicals that could damage her liver, but helps make her better."

Doctor groups balk

Leading physician groups are less certain about the use and benefits 
of medical marijuana.

The Ohio State Medical Association and American Medical Association 
remain opposed to the drug's use for medical purposes.

At issue for many of the physician groups is the lack of clinical 
tests and research to prove the drug's medical benefits said Reginold 
Fields, a spokesman for the Ohio association.

"Our membership does not feel there is enough conclusive evidence 
that has determined the exact medical benefits from marijuana," 
Fields told WCPO.

Part of the problem, medical experts say, is that marijuana is still 
considered a Schedule I drug by the federal government - placing it 
in the same category as heroin and methamphetamine. The 
classification places tight restrictions on who and how clinical 
trials can be done, officials said.

"This really inhibits our ability to do adequate research," said Dr. 
Michael Privitera, incoming president of the American Epilepsy 
Society and director of the Epilepsy Center at the University of 
Cincinnati Neuroscience Institute.

UC and Cincinnati Children's Medical Center are each in line to 
launch clinical trials to test the use of marijuana-derived medicines 
for patients with epilepsy.

Meanwhile, results from the limited research available has some 
doctors concerned about the growing use of CBD for children with 
epilepsy, Privitera said.

The study by a team of researchers at Children's Hospital Colorado 
found that use of CBD oils resulted in no significant reduction in 
seizures in the majority of patients, said Dr. Amy Brooks-Kayal, 
president of the American Epilepsy Society and chief of Child 
Neurology at University Colorado.

Additionally, in 20 percent of cases reviewed seizures worsened with 
use of cannabis and in 47 percent of patients there were adverse 
events, some being severe.

Some of the concern and challenge for Colorado doctors is the 
cannabis oil being prescribed to some children can vary batch to 
batch in levels of CBD, complicating researcher's ability to test for 
the drug's effectiveness.

Quality questions

"The concern is this stuff in Colorado is being grown by guys who are 
trying to do the right thing, but there are a lot of questions about 
quality control and dosing levels  things that could put these kids 
at risk," said Privitera. "It really emphasizes to us that good, 
controlled research is needed."

Brooks-Kayal agreed, adding that while Colorado neurologists continue 
to treat children whose parents are giving their children various 
strains of medical marijuana, none are prescribing the drugs. 
Instead, the drugs are prescribed by just a handful of doctors across 
the state.

"We value transparency with our patients, and we do everything we can 
to work with families to keep their children safe," said 
Brooks-Kayal. "I've seen a lot of families spend a lot of resources 
on something that hasn't worked for them. It just underscored the 
fact that there forms of epilepsy that are severe and life impairing 
and we need better treatments and research."

As for the Bentons, they say they're following the recent studies and 
have experienced firsthand hesitation from physicians as they've 
pursued their research and plans to move to Colorado.

In recent months, the couple says the drug Depakote has helped 
greatly reduce Addyson's seizures.

But they're concerned that the twice-a-month blood tests may 
eventually show the toddler's tiny liver isn't be able to handle 
doses of the drug long term.

Tough nights with their blue-eyed daughter remind them why they're 
committed to the move, they said.

"We still have nights where we sit there, watching her little body 
seizing," said Healther Benton. "I just want to be able to give her 
something safe to give her relief."
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MAP posted-by: Jay Bergstrom