Unthinkable two decades ago, parents are joining together to fight for their children’s right to use marijuana – and many legislators and researchers are standing with them.
For some teenagers, this might seem like a dream come true, but for Stephanie Ayotte, who has an extreme form of epilepsy, the hope is not to get high: it’s to get better.
These dedicated parents – Jennifer and Andy Ayotte, Beth and Patrick Collins, and Paige Figi – among many others, have worked hard to expand access to medical marijuana because it has dramatically reduced, or even eliminated, the occurrence of severe uncontrollable seizures that are not treatable with conventional drugs.
Stephanie’s daily seizures robbed her of the ability to walk freely when she was a teenager. Her parents began escorting her everywhere, one person on each side, for fear she would fall. Eventually, after several injuries, she was restricted to a wheelchair.
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These families have tried alternatives like special diets and, in some cases, over 18 different medications that caused a wide range of heart-wrenching side effects, like episodes of rage. Medical cannabis seemed like their last hope.
“I’ve seen it work. It worked for me and for a bunch of other kids. It’s an amazing plant,” said 15-year-old Jennifer Collins on an episode of NBC’s Dateline, entitled Growing Hope.
Charlotte Figi lent her name to one blend of cannabis strain called Charlotte’s Web, after she became its first successful patient. Her epilepsy disorder caused up to 300 seizures per week – but they nearly stopped once she began ingesting the marijuana-derived ingredient called cannabidiol (CBD). News of her recovery spread from Colorado giving patients with severe epilepsy much needed hope and causing many families to move to states where medical marijuana has been legalized. Parents note that because the concentrated CBD oil is very low in tetrahydrocannabinol (THC), the component that provides the “high” in marijuana.
Although 23 states in the U.S. have legalized marijuana for medical use, it is still currently classified as a Schedule 1 substance by the federal government, which means it is deemed as having no accepted medical use and a high potential for abuse. Additionally, severe restrictions are placed on medical cannabis studies, which has made it onerous for researchers, and delayed or thwarted trials for years. The hope is that current legislation making its way through the US Congress – H.R. 1635 and S. 1333 – would finally remove marijuana from the same classification as heroin.
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Another bill, introduced by conservative Republican U.S. Congressman Scott Perry, the Charlotte’s Web Medical Hemp Act of 2014, is being evaluated as an amendment to the current Controlled Substances Act. It would legalize the marijuana-based oil if it contained less than 0.3 percent THC.
Manufacturers that are dedicated to the safe production and distribution of marijuana for medical uses include companies like the Realm of Caring Foundation, which makes Charlotte’s Web in Colorado, and Tilray in Canada.
Tilray is a licensed producer for the Canadian healthcare system, under the Marijuana for Medical Purposes Regulations that ensure for those with an authorized medical need access to quality-controlled marijuana grown under secure and sanitary conditions. The Government of Canada has not endorsed the recreational use of marijuana, but the courts have required reasonable access to a legal source when a patient is authorized by a doctor to use it.
“We’ve seen remarkable relief through the use of CBD, not only for patients but for parents and caregivers,” Tilray’s Vice President of Patient Advocacy, Philippe Lucas, told Good News Network. “As a father to a six-year-old girl, I know that if you see your child suffering, there is nothing you wouldn’t try within a reasonable margin of safety.”
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This ‘last-resort’ option has helped Stephanie, now 23 years old, and Charlotte go from several severe seizures daily to 10-25 seizures per month, or none at all, respectively. Jennifer Collins has even experienced 100 days free of seizures.
“This is why clinical data is critical for patients such as Stephanie, and all others who suffer from various ailments and who have found relief by using medical marijuana,” Mrs. Ayotte said in an E-mail. “Until then, doctors will continue to be reluctant to prescribe medical marijuana. The result is very limited options for those who could benefit greatly.”
According to ClinicalTrial.gov, there are currently 32 ongoing studies being conducted in the U.S. that reference medical cannabis. Among them are Phase 3 clinical trials of Epidiolex, containing CBD as its active ingredient, for treatment-resistant forms of childhood epilepsy (Dravet and Lennox-Gastaut syndromes). While the trials are expected to complete patient recruitment this year and not report results until early 2016, the U.S. Food and Drug Administration (FDA) went ahead and granted orphan drug designation for Epidiolex. This means that it is available to independent U.S. pediatric epilepsy specialists to treat high need cases of childhood seizures that have no other treatment options.
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“I have been in this business for 20 years, first as a patient and now as a researcher. It is an incredible privilege to be part of someone’s healing process.” Lucas said. “To me, organizations in this space are not competitors – we are collaborators. The more research the better because we hear every day that medical cannabis is improving patients’ lives.”
Surprisingly, the FDA has previously given the go-ahead to THC-based drugs: Marinol and Cesamet. Approved back in 1985, these were the first cannabinoids marketed in the U.S. The pills help cancer patients with nausea and vomiting caused by chemotherapy, and AIDS patients to regain weight caused by loss of appetite.
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In 2010, Sativex, a half THC, half CBD whole-plant cannabis-based pharmaceutical, was approved in the UK, followed by Canada and other parts of Europe, as a mouth spray to reduce pain associated with multiple sclerosis and cancer.
While there is more work and research to be done, incremental steps by states and national governments reflect that now, more than ever, the conventional medical community is open to a very unconventional treatment for alternative healing. The hope is that one more child will have one less seizure – and people’s health soon will matter more than a half-century of status quo regulations.
