Mothers of children suffering from seizures have become powerful advocates for medical marijuana. Sally Schaeffer gives Lydia her medicine during dinner. Illustrates MARIJUANA-MOMS (category a), by Ariana Eunjung Cha (c) 2014, The Washington Post. Moved Monday, March 3, 2014. (MUST CREDIT: Photo for The Washington Post by Darren Hauck)

Recently IFP MP Mario Oriani-Ambrosini begged for the legalisation of dagga for medicinal use. He’s not the only one. In America, mothers who were once on the other side of the issue are pleading for its use too.


Washington - Standing in a Wisconsin legislature 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 legalise the drug. She begged. “If it was your child and you didn’t have options, what would you do?” she asked.

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

Emboldened by stories on Facebook and Twitter and in the 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 US states where medical marijuana remains illegal: Oklahoma, Florida, Georgia, Utah, New York, North Carolina, Alabama, Kentucky.

The “mommy lobby” has been successful in opening the doors to legalising marijuana – if only a crack in some places – where others have failed. In the 1970s and 1980s, mothers were on the other side of the issue, successfully fending off efforts to decriminalise marijuana with heartbreaking stories about how their teenage children’s lives unravelled when they began to use the drug.

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 legalisation of marijuana.

Last year, Colorado and Washington state made marijuana fully legal, and there has been a groundswell of support in several states for the same.

Medical marijuana is now legal in 20 states and the District of Columbia. The diseases and 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 believe may have an ability to 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 organisations 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.

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

Much of the concern centres 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 legalisation who is director of the Drug Policy Institute at the University of Florida.

The epilepsy community itself is divided on the issue. The Epilepsy Foundation, which represents patients and their families, said recently it backs efforts to legalise medical marijuana for use in paediatric epilepsy patients. But the American Epilepsy Society, which represents physicians and other professionals working in the field of epilepsy, said the treatment “may not be advisable due to lack of information on safety and efficacy”.

Sharon Levy, an assistant professor of paediatrics at Harvard Medical School, said she was a strong proponent of studying and developing medications from the active ingredients in marijuana. But she did 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 the long-term 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 understood 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 added, “the history of medicine is littered with stories of ‘medications’ that had terrible long-term impacts”.

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 mother, 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 known as Dravet syndrome, Charlotte, then 5, was suffering from more than 300 seizures each week. She was confined to 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 fund-raisers to try to raise money for the treatment; it can cost several hundred dollars a month to purchase the extract. A non-profit foundation formed to assist those seeking the drug said that 187 paediatric 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 travelling 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 non-profit organisation that is dedicated to trying to get governments around the world to legalise the use of marijuana for medical purposes. As a first step, he said he was working with partners in Jamaica, where he hoped 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 a number of conditions, and animal studies have shown that using CBD can stop seizures.

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 remove her eyesight, for instance. Moving the whole family to a state where medical marijuana is legal is not an option, Schaeffer said, because they own a small landscaping business and her 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.

While the mothers have received almost universal sympathy wherever they go, the proposed solutions to their problems differ by state. And none are permanent solutions.

The “marijuana moms” are now asking the Food and Drug Administration 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 Agency to reclassify marijuana so that it can be moved around more easily.

This month the mothers will take their fight to Washington. Dozens are planning to fly in from across the country to meet with key legislators and hold a march across the city. They plan to bring their children. – The Washington Post