Pubdate: Mon, 03 Mar 2014
Source: Washington Post (DC)
Copyright: 2014 The Washington Post Company
Contact: http://mapinc.org/url/mUgeOPdZ
Website: http://www.washingtonpost.com/
Details: http://www.mapinc.org/media/491
Author: Ariana Eunjung Cha
Bookmark: http://www.mapinc.org/mmj.htm (Cannabis - Medicinal)

'MOMMY LOBBY' PUSHES FOR MEDICAL MARIJUANA

Parents of Children Suffering From Epilepsy Support Divisive Treatment

Standing in a Wisconsin State Capitol hearing room surrounded by 
parents hugging their seriously ill children, Sally Schaeffer began 
to cry as she talked about her daughter.

Born with a rare chromosomal disorder, 6-year-old Lydia suffers from 
life-threatening seizures that doctors haven't been able to control 
despite countless medications. The family's last hope: medical marijuana.

Schaeffer, 39, didn't just ask lawmakers to legalize the drug. She begged.

"If it was your child and you didn't have options, what would you 
do?" she said during her testimony in Madison on Feb. 12.

The representatives were so moved that they introduced a bipartisan 
bill to allow parents in situations similar to Schaeffer's to use the 
drug on their children.

Emboldened by stories circulated through Facebook, Twitter and the 
news media about children with seizure disorders who have been 
successfully treated with a special oil extract made from cannabis 
plants, mothers have become the new face of the medical marijuana 
movement. Similar scenes have been playing out in recent weeks in 
other states where medical marijuana remains illegal: Oklahoma, 
Florida, Georgia, Utah, New York, North Carolina, Alabama, Kentucky.

The "mommy lobby" has been successful at opening the doors to 
legalizing marijuana - if only a crack, in some places - where others 
have failed. In the 1970s and '80s, mothers were on the other side of 
the issue, successfully fending off efforts to decriminalize 
marijuana with heartbreaking stories about how their teenage 
children's lives unraveled when they began to use the drug.

Mothers have long been among the most powerful constituent groups in 
the United States, and the reason is clear. Groups such as Mothers 
Against Drunk Driving are able to draw public support because they 
tug at a universal human emotion: the desire to protect children from 
harm. And while national gun-control efforts after the Sandy Hook 
massacre faltered, mothers' groups worked to keep the issue on the 
public radar, helping to get some new measures passed at the state level.

Today, mothers are fighting for access to the drug, and they have 
changing public attitudes on their side. For the first time, a 
majority of Americans in opinion polls say they support the full 
legalization of marijuana.

Last year, Colorado and Washington state made marijuana fully legal, 
and there has been a groundswell of support in several states for 
ballot initiatives or legislation to do the same, including some in 
the conservative South.

Medical marijuana is now legal in 20 states and the District of 
Columbia. The conditions for which it can legally be used are limited 
and vary by jurisdiction. Most states have additional requirements 
for children: Instead of one prescription, parents must get two from 
different doctors.

Even in states where marijuana is available for children, the mothers 
say it is often a challenge to convince physicians that the potential 
benefits outweigh the risks.

The drug the mothers are seeking is an extract that contains only 
trace amounts of the part of the plant responsible for the euphoric 
effect of the drug but is still high in cannabidiol, or CBD - a 
substance that scientists think may quiet the electrical and chemical 
activity in the brain that causes seizures. Instead of leaves that 
are smoked, it is a liquid that is mixed in food or given to a child 
with a dropper.

The prospect of treating large numbers of children with this 
substance has alarmed medical organizations and anti-drug groups that 
say the potential dangers of prescribing an untested and unregulated 
treatment for young children are being lost in the conversation.

Little is known about the effects of marijuana on children; most 
studies have looked at teenagers who use it illicitly.

Much of the concern centers on the developing brain: Marijuana use 
has been linked to higher rates of mental illness, including thought 
disorders, depression and anxiety, as well as - according to one 
prominent study published last year - diminished IQ over time.

"There's a lot of misinformation and emotion in this issue, rather 
than a focus on science," said Kevin Sabet, an outspoken opponent of 
marijuana legalization who is director of the Drug Policy Institute 
at the University of Florida and was a former senior adviser for drug 
policy in the Obama administration.

The epilepsy community is divided on the issue. The Epilepsy 
Foundation, which represents patients and their families, said in 
late February that it backs efforts to legalize medical marijuana for 
use in pediatric epilepsy patients. But the American Epilepsy 
Society, which represents physicians and other professionals working 
in the field of epilepsy, says the treatment "may not be advisable 
due to lack of information on safety and efficacy."

Sharon Levy, an assistant professor of pediatrics at Harvard Medical 
School and chair of the American Academy of Pediatrics committee on 
substance abuse, said she's a strong proponent of studying and 
developing medications from the active ingredients in marijuana. But 
she does not support the idea of parents choosing the plant they 
think would be best, making their own oral preparations and guessing 
at proper dosage without knowing longterm side effects.

"It is a bad idea. When I look at the accumulation of studies about 
marijuana and children, I am very concerned," she said.

Levy said she understands that efforts to develop and test 
marijuana-based treatments for the disorder may not be moving fast 
enough for some children with severe epilepsy. But she said that the 
fact that there are flaws with the regulatory system means that we 
should fix the system rather than bypass it.

"We shouldn't forget that the regulatory system was put in place for 
a reason," Levy said. "The history of medicine is littered with 
stories of 'medications' that had terrible long-term impacts."

Charlotte's story

Stories about the promise of marijuana for seizures have been 
circulating as far back as the 19th century, but it wasn't until two 
years ago, when Paige Figi, a Colorado mom, began posting online 
stories about her child's experiences with the treatment, that other 
families began to take notice.

Of the 2.3 million Americans living with epilepsy, more than 1 
million of them have seizures that can't be controlled by modern 
medicine. Figi's daughter, Charlotte, was one of them.

Diagnosed with a rare condition called Dravet syndrome, Charlotte, 
then 5, was suffering from more than 300 seizures each week. She used 
a wheelchair, could only say a few words and had gone into cardiac 
arrest more than once. Desperate after doctors told them there was 
nothing more they could do, Figi and her husband, Matt, turned to 
medical marijuana.

They began to give Charlotte a few drops of an extract made from a 
strain of marijuana that was high in CBD, which is thought to be 
medicinal, and low in THC, the component that creates a high, twice a 
day with her food. They were surprised when the seizures nearly stopped.

As Charlotte's miraculous story spread, more than 100 families 
relocated to Colorado Springs, where the dispensary selling the 
substance is located. Across the country, parents are holding bake 
sales, benefit concerts and other fundraisers to try to raise money 
for the treatment; it can cost several hundred dollars a month to 
purchase the extract. A nonprofit foundation formed to assist those 
seeking the drug said that 187 pediatric patients are being treated 
and that there is a waiting list of more than 3,000.

Figi and Joshua Stanley, the grower who co-created the strain that is 
being used in the treatment - now known as "Charlotte's Web" - have 
become heroes in the epilepsy community.

At the invitation of mothers, Figi and Stanley have been traveling 
around the country, telling Charlotte's story to lawmakers in other states.

"It's very emotional," Figi said of the hearings. "Everyone's handing 
out tissues - especially when someone comes who has lost a child to 
seizures, and they are coming out to support this effort."

Stanley, 38, runs the Stanley Brothers, one of Colorado's biggest 
growers, with five of his brothers. He recently started Strains of 
Hope, a nonprofit organization that is dedicated to trying to get 
governments around the world to legalize the use of marijuana for 
medical purposes. As a first step, he said he is working with 
partners in Jamaica, where he hopes the extract could be available 
for free to children who need it as soon as the end of this year.

"Children should not be dying because of these antiquated laws," he said.

But beyond all the heartbreak and hope lies the question of whether 
the treatment works. And if so, how?

Stanley declined to release any detailed numbers about how effective 
the treatment has been, but he said nearly every child with epilepsy 
who took the extract experienced a reduction in seizures.

There is some medical support for such a claim. There are several 
thousand published studies showing the potential benefits of 
marijuana for some conditions, and animal studies have shown that 
using CBD can stop seizures. Marijuana is made up of hundreds of 
components, with about 80 classified as cannabinoids unique to the 
plant, which scientists think activate specific receptors in the 
brain and other parts of the body to produce physiological and 
behavioral effects.

Heather Jackson, executive director of a foundation that is dedicated 
to research, education and advocacy for Charlotte's Web and other 
marijuana-derived medicines, said the organization has begun to 
communicate with partners about the possibility of starting clinical 
trials for the treatment.

"We know that, in order for the treatment to be accepted by the 
medical community, there has be more testing, but because it's 
marijuana, there has been a lot of red tape," she said.

GW Pharmaceuticals, a British company, received FDA approval in 
December to begin clinical trials of a medicinal form of marijuana 
for children with epilepsy at New York University's Langone Medical 
Center, the University of California at San Francisco and other locations.

But the trials are limited, and many mothers said they tried to 
enroll but were told the trials were full.

Proposals for the future

One of the first things Schaeffer told lawmakers when she stepped up 
to the podium in the hearing room in Madison was that she had never 
smoked marijuana. She wanted to make it clear that she wasn't part of 
a more radical movement that aims to legalize recreational marijuana.

Like many of the mothers involved, Schaeffer said she supports 
legalizing medical marijuana for everyone but would be happy with a 
narrow law that authorizes the use of a specific kind of marijuana 
treatment for children.

Schaeffer's daughter, Lydia, has a rare form of epilepsy that makes 
her have seizures when she sleeps. Doctors have told the family that 
the only treatment option is a surgical procedure that would remove 
part of her brain. They warned Schaeffer and her husband that such a 
treatment might end up leaving her more disabled - the surgery could 
blind her, for instance. Moving the whole family outside Wisconsin to 
a state where medical marijuana is legal is not an option, they said, 
because they own a small landscaping business in Burlington and Sally 
Schaeffer's parents live nearby.

She said that if the bill does not go through this session, she may 
move to Colorado with her daughter and her husband may have to stay 
behind with their two sons.

"If I have to wait, I worry, what if my child doesn't make it? It is 
heartbreaking to think of losing your child from a seizure when you 
know the medication is out there that could help them," Schaeffer said.

Wisconsin state assembly member David Murphy, a Republican, said he 
signed on to be a co-sponsor of the bill after hearing about the 
mothers' plight.

"I am not in support of legalizing marijuana and have not supported 
medical marijuana up to this point, but common sense tells me this is 
not remotely the same thing as that," Murphy said.

While the mothers have received almost universal sympathy wherever 
they go, the proposed solutions to their problems differ by state.

In Wisconsin, the state committee on children and families passed a 
bill last week to allow the use of CBD oil in the treatment of 
seizure disorders. In Utah, state lawmakers have talked about 
importing the extract from Colorado and having the health department 
administer it as an herbal supplement.

In New York, Gov. Andrew M. Cuomo (D) has proposed a plan to use 
existing law to allow 20 hospitals to dispense the drug.

None of these are permanent solutions, the mothers say.

Even those who live in one of the states that allow medical marijuana 
say there is a need for change.

The main issue is that many parents think that only certain strains 
or formulations may work for their children, and, because marijuana 
is classified as a controlled substance, they can't move the drugs 
across state lines - limiting not only their treatment options but 
medical research.

"This is not how medical care is supposed to work in the United 
States. You shouldn't have to watch your child suffering and be told 
you can't have the medicine that can help because you live in the 
wrong state," said Colleen Stice, 35, a former payroll manager in 
Tulsa who quit her job to take care of her 14-month-old son, Rowan, 
after he began to have seizures.

She said she and her husband are ready to move to Colorado if 
legislation is not approved in Oklahoma, but she worries about what 
might happen if a different drug that works better is developed in 
another state. Would they pick up and move again?

The only answer to this patchwork system of access to medical 
marijuana treatments, the mothers say, is federal intervention.

They are asking the FDA to speed up the approval process for drugs 
based on CBD, requesting that the National Institutes of Health 
dedicate more money to this type of research and urging the Drug 
Enforcement Administration to reclassify marijuana so that it can be 
moved around more easily.

This month, the mothers will bring their fight to Washington. Dozens 
are planning to fly in from across the country to meet with key 
legislators on Capitol Hill and hold a march across the city. They 
plan to bring their children.
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MAP posted-by: Jay Bergstrom