CBD Treatment Gaining Legitimacy Through Research

CBD Treatment Gaining Legitimacy Through Research

Encouraging results from cannabidiol trial for treatment-resistant epilepsy

cbd-oil-for-epilepsyCannabidiol (CBD), a medical marijuana derivative, was effective in reducing seizure frequency and well-tolerated and safe for most children and young adults enrolled in a year-long study led by epilepsy specialists at NYU Langone Medical Center.

These latest findings provide the first estimates of safety, tolerability and efficacy of prescription CBD in children and adults with severe, highly treatment-resistant epilepsy. Led by Orrin Devinsky, MD, professor of neurology, neurosurgery, and psychiatry and director of the Comprehensive Epilepsy Center at NYU Langone, the study is published in the December 23 issue of Lancet Neurology. While early findings have been released at medical meetings — including the 2015 American Academy of Neurology conference — these are the first findings from the trial to be published in a peer-reviewed journal.

“We are very encouraged by our trial results showing that CBD was safe and well-tolerated for most patients, and that seizures dropped significantly,” says Devinsky. “But before we raise hopes for families who regularly deal with the devastation of treatment-resistant epilepsy, more research, including further studies through our ongoing randomized controlled trial, are needed to definitively recommend CBD as a treatment to patients with uncontrolled seizures.”




medical-marijuana-large51-1024x682By the end of 2015, patients in Florida may finally have access to CBD under a bill that was signed into law in November, 2014 by Governor Rick Scott. A judge in Tallahassee dismissed the final challenge to the rule Wednesday night.

The Florida Department of Health, which developed the rule, is expected to start accepting applications within three weeks from eligible growers for the strain of marijuana that is low in euphoria-inducing tetrahydrocannabinol, or THC, and high in cannabidiol, or CBD. Growers could start selling to eligible patients who are put on a state-run “compassionate use registry” within months.

“Today’s ruling allows the department to move forward with implementing the Compassionate Medical Cannabis Act, approved by the Legislature in 2014,” the Department of Health said in a statement. “The department remains committed to ensuring safe and efficient access to this product for children with refractory epilepsy and patients with advanced cancer. We are moving swiftly to facilitate access to the product before the end of the year.” – Tampa Bay Times

The delay in implementation have left many parents frustrated and many patients who may benefit in the lurch after hope was built and then pushed back again and again.

Judge Watkins began his 68-page ruling with an excerpt from “Charlotte’s Web,” by E.B. White.

“Life is always a rich and steady time when you are waiting for something to happen or hatch,”

Rep. Matt Gaetz, who sponsored the original bill, said he hoped this was the end of the legal challenges.

“It is my hope that when licenses are issued we will not have another round and we can get medicine into the hands of the vulnerable as soon as possible,”

VIDEO: Charlotte’s Web for Epilepsy Consortium

VIDEO: Charlotte’s Web for Epilepsy Consortium

The Epilepsy Association of Central Florida, EpilepsyU and The Realm of Caring Florida present “Charlotte’s Web: A Consortium for Understanding Florida’s Compassionate Care Law” at Concorde Career Institute, Orlando Florida. Filmed November 15, 2014


Chuck Carmen, Director, Epilepsy Association of Central Florida
Dr. Ngoc Minh Le, Epileptologist, Pediatric Neurology, P.A.
Paige Figi, Founder, Realm of Caring and mother of Charlotte Figi
Holly Moseley, Co-Fouder, Realm of Caring Florida

Special thanks goes to Concorde Career Institute for hosting the event.

PART 1 of 3 features Mr. Chuck Carmen giving an intro to epilepsy and the speakers and Dr. Le, Epileptologist with a presentation on CBD trials for Dravet and Lennox-Gasteaut Syndromes.

PART 2 of 3 features Holley Moseley, co-founder Realm Of Caring Florida, presenting detailed information about Florida’s Charlotte’s web bill, and changes that need to be made based on a judge’s decision.

Part 3 features Paige Figi, mother of Charlotte Figi, who is the namesake for Charlotte’s Web Strain of Cannabis. Paige is the founder of Realm of Caring. The segment ends with Q&A for all presenters.

LINK CORRECTION FROM VIDEO: The Realm of Caring site is TheROC.us, not “.com”

New Research Will Study Dravet Patients Taking CBD

New Research Will Study Dravet Patients Taking CBD

Matt Figi hugs his 7-year-old daughter Charlotte inside a Colorado greenhouse. The plants are a special strain of medical marijuana known as Charlotte's Web, which was named for Charlotte after she used the plant to treat epileptic seizures Brennan Linsley—AP

Matt Figi hugs his 7-year-old daughter Charlotte inside a Colorado greenhouse. The plants are a special strain of medical marijuana known as Charlotte’s Web, which was named for Charlotte after she used the plant to treat epileptic seizures Brennan Linsley—AP

In what is believed to be the first study of its kind, researchers at the University of Colorado, Denver will study the genes of those with a kind of epilepsy called Dravet Syndrome who have been treated with a strain of medical marijuana known as Charlotte’s Web. The study will attempt to determine if specific genetic components can explain why some epilepsy patients see positive results from ingesting Charlotte’s Web, while others do not. (more…)

The Case For Whole Plant Legislation – Is CBD Alone Good Enough?

The Case For Whole Plant Legislation – Is CBD Alone Good Enough?


Charlotte’s Web Plant

In recent months, one strain of cannabis has been talked about, and legalized more than any other; Charlotte’s Web, a strain of Marijuana bred by Realm of Caring, a group of growers and dispensary owners in Colorado, for its high CBD content. CBD is the least controversial Cannabinoid found in the plant, and there are hundreds, if not thousands of stories to support that it can help reduce seizures.

An effect of this new media, legislative and social media blitz of coverage on CBD is that people now seem to think that Charlotte’s Web is the only viable source of CBD, and that CBD alone is effective in seizure control, this is leading parents from across the nation to move to Colorado for access to Charlotte’s web specifically, because they believe that is the only legal way to get CBD, and possibly worse, that Charlotte’s web is the only plant that contains CBD.

Charlotte’s Web is seemingly a great product, that is most likely helping lots of children, and it has gotten the ball rolling in a huge way in ending Cannabis Prohibition nationwide, even having bills named after it (Charlotte’s Web Medical Hemp act of 2014), and increasing awareness about the medicinal aspects of Cannabinoids. While we are very much a supporter of the new laws, Charlotte’s Web, Realm of Caring, and the advancement of seizure treatments through the advent of CBD, EpilepsyU wants to cover other opinions about CBD, THC, other Cannabinoids, and access to the whole plant.

In an column on Lady Bud, one of the most respected journals about the Cannabis Industry, Author Vanessa Waltz interviews Jason David, Jason and Jayden’s Journey, one of the most widely known stories about pediatric Cannabis treatments.  In this interview, David explains that it wasn’t Charlotte’s Web that was solely responsible for Jayden’s improvement.

Excerpt via Lady Bud:

“I wish Charlotte’s Web worked for all epileptic kids, but it doesn’t,” says David. “The worst seizures Jayden ever had on medical cannabis was while we were using Charlotte’s Web.”

Realm of Caring Executive Director Heather Jackson, who was also on hand for the bill’s introduction, reports that her son Zaki has been seizure free since October 2012 using Charlotte’s Web. But children like Zaki seem to be the exception rather than the rule, according to David.

“They’re not telling the whole truth,” says David. “There’s no way possible that all these children in Colorado could get seizure control and get off all their medications without using different ratios and adding THC and THCA (which are not allowed by the newly proposed legislation). Charlotte’s Web can work great in the beginning but it’s impossible to get off all the medications and go through benzo-withdrawals without being able to play with the THC ratios.”

According to David, “The only realistic option is having the whole plant available, THC and all, so people can trial and error just like with pharmaceuticals. There are so many ways to use this plant, and it’s only ok to have one ratio? That doesn’t make sense. This plant isn’t half-good and half-evil.”

The article continues, with a statement by Brian Wilson,

“We saw minor seizure control and developmental progress with CBD alone, but we didn’t see real seizure control until we added measurable levels of THC to the mix,” explains Wilson. “Others see great results with THCA added in. Some see very good results with no CBD, like in NJ where there is little to no CBD available. The point is, this is highly individualized medicine. There is no magic bullet.”

Jason David agrees. “Many other parents in California tried Charlotte’s Web and while a lot are having success, others are not getting seizure control with Charlotte’s Web,” says David. “They have different options in California to try different kinds of medical cannabis, and many have found that different strains and ratios are working to control their kids’ seizures instead. Low THC/high CBD doesn’t work for everyone; just like pharmaceutical medications, it’s not one size fits all.”

What about the positive, “baby steps” that are made with these CBD-only bills, they are a great step forward right?

Some people feel that CBD-only legislation is setting up some parents for disappointment after they’ve been told it could be a miracle ‘cure’.

Even worse, Vanessa Waltz of LadyBud contends that the CBD-only legislation at the federal and state level has more to do with Realm of Caring’s business model than anything else.

She points to the trademarking of the name “Charlotte’s Web” and ROCs push to distinguish CBD as separate from marijuana.

“Many activists believe that RoC’s labeling of their medicine as separate from medical marijuana is completely disrespectful to the activists that came before them,” Waltz writes. “Indeed, how would the [owners of RoC, the Stanely brothers[ have ever been able to develop the Charlotte’s Web strain without comprehensive medical cannabis legislation in Colorado? At a time when public support for widespread comprehensive reform is at an all-time high, many of the most prominent pediatric epilepsy activists in our country are becoming more and more skeptical of RoC’s intent.”

It is also possible that legislatures will use the passing of CBD bills as a way to argue against full medical access, with the argument, “we have already got you CBD which everyone knows is the one that doesn’t get you high, and helps with seizures, now you want us to legalize the stuff that gets you high?”

In conclusion, we want to spark awareness and healthy discussion about Cannabis treatment in general. Do you feel that CBD exclusive legislation is a good step forward, or is it going to have the effect of confusing parents and patients, and further limiting other Cannabinoids that may be also helpful?