The Devastating Illness That Pot Might Aid and the Medical Marijuana Pioneers Fighting to Change the Law

For parents of children with intractable epilepsy, the world is a battlefield scored in daily seizure counts and wrought with the stress of not knowing when or if it will ever end. There is no guide on how to raise a child with an illness even the most well respected researchers don’t completely understand how to treat.

The sheer trauma of fighting that daily fight has led many parents to take a second look at the medicinal applications of cannabis. This is a risky move, because (even though it has been shown to treat the symptoms of countless conditions—epilepsy in particular) cannabis remains a Schedule I controlled substance, making it federally illegal to possess, manufacture or distribute.

In Utah, the epilepsy community is eagerly anticipating the launch of the state’s new medical cannabis law, which legalizes possession of a strain of cannabis high in cannabidiol (CBD) for patients with intractable epilepsy in the state. Unlike  the notorious tetrahydrocannabinol (THC), the most well-known compound in cannabis and the one responsible for the “high” (as well as many therapeutic effects), CBD is non-psychotropic. It is a compound, or “cannabinoid” responsible for many of the healing effects of cannabis, and has proven to be especially effective in when it comes to childhood epilepsy.The new Utah  law requires a parent jump through rigorous hoops to qualify for possession of high-CBD cannabis under the bill and the medicine has no legal means of distribution within the state, meaning parents must break state and federal law in order to obtain it. 

Despite its significant shortcomings, it's still significant that Utah's right-wing legislature passed a medical cannabis law at all. And it's likely it would never have passed if it weren't for shifting cultural attitudes that have brought medical marijuana into the mainstream spotlight in the last couple of years. Responsible, in part, for that shift are a neurologist named Sanjay Gupta, a little epileptic girl named Charlotte Figi and the Colorado cannabis dispensary Realm of Caring. 

Gupta's Weed

CNN aired the documentary “Weed,” hosted by their chief medical correspondent, Gupta, last July. In it, Gupta highlighted the therapeutic effects of CBD. Gupta had been tapped by President Obama to be Surgeon General in 2009, but turned down the job. He was the first doctor of note to publicly reverse his opinion on cannabis and now champions its medical use.

The story of CBD was told in Weed through a pediatric cannabis patient named Charlotte Figi. She suffers from a severe form of childhood epilepsy, Dravet Syndrome. Today Figi is mostly seizure free, thanks to the non-psychotropic strain of cannabis produced by Colorado-based cannabis dispensary and non-profit organization Realm of Caring (ROC).

Gupta’s special has steadily driven demand for CBD-heavy medicines, prompting a wave of restrictive medical cannabis laws allowing only for strains of the plant so low in THC they fit the legal definition of industrial hemp.

The Figi family worked with ROC, which is comprised of five brothers, the "Stanleys.” ROC has been forthcoming about its involvement in the legislation passed in conservative states that favors their high-CBD low THC strain, Charlotte’s Web, named for Charlotte Figi. The strain is also referred to as “Alepsia” when it is infused in oil and packaged as capsules.

Now, thanks to the publicity from CNN and changing attitudes nationally about medical cannabis, ROC said they are preparing to expand their production internationally and ship high-CBD medicine across state lines to Utah.

CBD, THC and the Entourage Effect

If no-high medical marijuana sounds too good to be true, that’s because it probably is.

CBD was isolated and identified by Israeli researcher Raphael Mechoulam in 1963. The following year THC was isolated and identified as the “active ingredient” in cannabis. THC would then be isolated and synthesized into a medicine known as Marinol, which has unpleasant side effects not found in whole-plant cannabis.

This led Mechoulam to identify the “entourage” effect, meaning that the therapeutic compounds found in cannabis are most effective in a synergy with one another. Researchers have determined that CBD is most effective in conjunction with THC.

CBD faded into obscurity until about six years ago, when the Oakland, Calif. cannabis testing lab Steep Hill Halent and their partners at the dispensary Harborside Health Center began to notice a correlation between strains testing higher in CBD and observed positive effects in a variety of patients.

Growers in legal markets responded to the demand by breeding plants with higher ratios of CBD. Those strains have been processed and consumed as flowers (buds), edibles, tinctures, oils and topical ointments in states where medical cannabis is legal.

All known cannabinoids (beyond both THC and CBD) have wide-ranging therapeutic effects. The appeal of CBD, however, is in the misinterpretation that it is medical cannabis without the psychotropic effects of THC, which isn’t considered to be “medical” in states with conservative ideologies.

Preaching CBD in the Heart of Zion

The Stanleys couldn’t be better ambassadors for high-CBD cannabis treatments in conservative states, specifically states without medical cannabis laws. Not only are they offering a product that has a pharmaceutical-ish name (Alepsia) and doesn’t induce a “high”, but they have publicly reinforced their religious values.

Jesse Stanley told the online blog OnFaith in February that he “believes God has called his family to pioneer a form of cannabis-based Christian compassion that offers a positive alternative to the pharmaceutical industry’s expensive and often ineffective medications.”

ROC intends to use the legal definition of hemp and newly passed state legislation exempting possession of CBD (still a Schedule I drug according to federal law) in conservative states to begin shipping Alepsia domestically.

“Hemp is a gray area because the federal government still says CBD is federally illegal,” said Heather Jackson, co-founder and executive director of the Realm of Caring Foundation. Jackson, also the parent of a child with intractable epilepsy, was addressing an audience at the Epilepsy Utah “Get Seizure Smart! Conference”  in early June in Salt Lake City, Utah.

“CBD is actually still a Schedule I substance although it is non-psychoactive* [sic],” Jackson said. “That is one of the biggest things that prevents us from moving forward with good clinical data and research.”

Utah was the first state to pass a CBD-only bill. HB 105, aka Charlee’s Law, was signed by Gov. Gary Herbert in March, goes into effect July 1 and will sunset in 2016.

Charlee’s Law creates a state-run Hemp Extracts Registry. Patients suffering only from intractable epilepsy qualify and must provide paperwork signifying they have exhausted their pharmaceutical options. Qualifying patients and caregivers would then pay $400 annually to join the registry, which exempts them from possession, within the state, of high-CBD cannabis extracts, maintaining that the product used does not test higher than 0.3 percent THC. Test results for each batch of medicine must be filed with the state immediately after obtaining the medicine.

Thanks to an amendment in the federal Farm Bill, hemp cultivation is now legal for research purposes in states that pass bills allowing for the cultivation and research to take place within the state. Utah’s HB 105, along with other high-CBD bills, includes an amendment permitting hemp cultivation under the federal Farm Bill.

ROC has stated its intent to use the 0.3 percent THC distinction in conjunction with the amendment in the Farm Bill to cultivate Charlotte’s Web for a national market.

At this time there are no plans to grow Charlotte’s Web as hemp in Utah and HB 105 does not provide any legal means by which Utah residents could obtain the oil within the state.

“We are going to mail it, that is how you will get it in Utah,” Jackson said. Jackson added that qualifying patients under HB 105 should feel “very confident in production” because ROC has increased its production capabilities.

“[Receiving Alepsia in the mail] is the acceptable solution, I think it is something we can make work,” said Jennifer May of Hope 4 Children with Epilepsy, a Utah-based organization that lobbied for the bill.

Although mailing Alepsia over state lines is federally illegal, it is the only option under the law as it is written for Utah to obtain the medicine.

Expanding National and Global Production

Jackson said Realm of Caring started with a 6,000 square foot greenhouse to supply their Colorado Springs dispensary. They expanded in anticipation of the airing of the CNN special by adding another 10,000 square foot greenhouse.

Now ROC says they have a warehouse full of Charlotte’s Web starter plants (clones), and intend to plant 36,000 plants outdoors this year as a hemp crop in Colorado. Additionally, they are working with the government of Uruguay to cultivate Charlotte’s Web to be imported as industrial hemp for processing in the United States, which ROC says will allow them to meet global demand (there is an international waiting list for Alepsia) by 2015.

“If you have ever taken a dietary supplement or a multivitamin then you are trusting in the good manufacturing practices that have been established by the Food and Drug Administration (FDA) and we will be following those same standards,” said Jackson. “Specifically with the hemp that we grow out of the country in Uruguay and bring here to process. It would basically be at that point considered a dietary supplement and be able to be shipped.”

Jackson said Realm of Caring worked with families across the country, particularly in conservative states like Utah, to help pass the legislation that legalized the possession of Alepsia. Similar bills passed or were proposed in a handful of conservative states including Alabama, Florida, Kentucky, Wisconsin and Missouri.

“We are able to make [sic] some legislative influence,” Jackson said. “[The families] create the demand, they find bill sponsors and we come speak about the experience we had in Colorado. Every state looks different. Sometimes we will go into states that already have legislation set up and it might not be ideal, especially for pediatrics, especially for how we deliver the medicine. In Illinois we were able to work with them to add pediatrics and epilepsy as qualifying conditions as well as infused products, which Alepsia is.”

Legally Treating Epileptic Children

Jackson’s son, Zaki, suffers from Myoclonic-Astatic Epilepsy (MAE) also known as Doose Syndrome. The Jacksons tried 17 different medications, which they said either didn’t help or even made the seizures worse. Then Jackson met the Stanleys and began treating Zaki with Charlotte’s Web.

“After a decade I finally got to meet him [my son] without all this seizure activity and drugs,” she said. “If you can imagine waiting ten years to meet your kid… it’s surreal. I don’t have words to describe that,” Jackson said in an ROC promotional video.

“You get angry that you couldn’t have tried this 500,000 seizures ago, that no one even mentioned it as an option,” she said. “There wasn’t a long-term solution for my son.”

Zaki has been seizure free for over 20 months.

Jackson said many of the FDA-approved drugs used to treat epilepsy have potentially fatal side effects and aren’t even approved for use in children.

“There are many drugs that we use that are either off-label or not recommended for children, and we use them—because we have to,” Jackson said. “We have to get the seizures under control because the mortality rate is very high in this population.”

“I believe, from the bottom of my soul, these families and these children need other options and this is another option,” Jackson said. “That’s it.”

Although ROC acknowledges that THC and CBD work synergistically together to create the beneficial effects, they see high CBD plants, grown to treat a specific condition, as a way to bring cannabis to new markets. These plants manipulate the legal distinction between hemp and marijuana. From ROC’s perspective, this has brought the plant to what was once a barren wasteland of conservative ideology unwelcoming to any form of medical cannabis.

Time To Reschedule

The idea that there is a version of medical cannabis without the “high” induced by THC is appealing to conservative sensibilities, perhaps because it eliminates the fear of the unknown in embracing whole-plant medical cannabis.

Whole-plant medical cannabis, however, is not an “unknown.” Although the research is not wholly American, medical cannabis studies have advanced globally and we shown that cannabis is safer even than sugar. Every day scientists and medical patients alike are learning more about how cannabis works to treat just about every symptom of every identified illness.

Now that 86 percent of the nation supports safe access to cannabis for medical purposes it is no longer a question of “if” but “how” and “when” it will become legal nationally. Just as Washington and Colorado are embarking on their great legalization experiments, conservative states like Utah are embarking on the experiments of restrictive CBD-only laws.

In the meantime, children and adults in all states without safe access to medical cannabis continue to suffer. They suffer from conditions that can be alleviated with whole-plant cannabis medicine, and they suffer from selective arrests and prosecution when they break the federal law to try to access that medicine. 

At what point do we accept science, reschedule cannabis and move on beyond patchwork state-by-state legislation?

**According to cannabis researcher Dr Jahan Marcu, CBD is actually psychoactive because the definition of psychoactive means the compound crosses the blood-brain barrier (and it does). The correct way to refer to CBD is “non psychotropic” because it doesn’t produce any psychedelic mental effects. 

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