A Limited Amount of “Caring”: Parents and Advocates React to Realm of Caring’s Federal CBD-Only Bill

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Image: Jason and Jayden David, photo courtesy of Jason David 

Congressman Scott Perry (D-PA), Representative Steve Cohen (D-TN) and Representative Paul Broun (R-GA) introduced the “Charlotte’s Web Medical Hemp Act of 2014” yesterday in Pennsylvania, flanked by representatives from Colorado’s Realm of Caring (RoC), the producers of the high-CBD low-THC Charlotte’s Web cannabis strain.
According to yesterday’s press release from RoC,
The bill proposes to exclude industrial hemp and cannabidiol (CBD) from the definition of marijuana, ensuring that children and individuals with epilepsy and other debilitating seizure disorders have access to life-changing Cannabidiol (CBD) Oil and therapeutic hemp such as the Charlotte’s Web™ brand of hemp products. High CBD hemp strains have provided relief for thousands of people in the United States as it’s shown to reduce the amount and duration of seizures in children suffering from epilepsy and other seizure disorders.

One might think that the introduction of a federal medical marijuana bill with a good chance of passing would receive widespread support from cannabis reformers. However, in the pediatric cannabis community, parents are expressing disappointment, frustration, and even disgust over the proposed legislation. Perhaps, as RoC says in their press release, that’s because the bill would only allow for a product that’s not really medical marijuana at all.

Pediatric cannabis pioneer Jason David has been treating his 7-year-old son Jayden with medical cannabis since June, 2011 – about a year longer than Charlotte Figi, the Charlotte’s Web namesake who captured national attention in Sanjay Gupta’s first CNN “Weed” special in August of last year. In fact, in the first viral Realm of Caring video featuring Charlotte and her mother Paige Figi, Figi credits David with inspiring her to try medical cannabis for Charlotte, who has Dravet syndrome, the same type of epilepsy as Jayden.

While hopeful parents across the country are celebrating the announcement of the new legislation, David is skeptical about the number of patients the new bill will actually be able to help.

“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 contol 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.”

As more parents have been able to access cannabis for their epileptic kids and have shared their stories, the need to supplement with different cannabinoid ratios has become increasingly clear.

Brian Wilson (L) and Jason David Photo: Jason David

Brian Wilson (L) and Jason David
Photo: Jason David

“CBD is a very important part of the mix, but only part,” says Brian Wilson, whose daughter Vivian has Dravet syndrome. The Wilson family was featured in Gupta’s “Weed 2” special, which aired on CNN earlier this year.

“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.”

Families like the Wilsons and the Davids live in medical marijuana states where they can access THC and THCA medicine as well as CBD-rich strains including not only Charlotte’s Web but also R4 and Haleigh’s Hope (CO), Remedy (WA), and Cannatonic and ACDC (CA); however, if this legislation passes, families in non-medical states will not have the opportunity to try cannabis that has higher levels of THC.

While many parents in states without medical cannabis are hopeful that Charlotte’s Web will be a live-saver for their children, more experienced activists continue to warn that these expectations may not be realistic. Pediatric Cannabis Therapy (PCT) organization founder Rebecca Hamilton-Brown, who has been treating her epileptic son Cooper with cannabis for about 2 years, believes that parents who support CBD-only legislation may be setting themselves up for disappointment. Brown’s PCT facebook group conversation got heated yesterday when parents discussed the new bill.

“It is ignorance that leads people to believe that CBD only is the way to go,” explains Brown. “They either have never dosed their children or they are totally naïve when it comes to how the political machine works. I have experience in both areas and I will never support CBD-only legislation; it is ridiculous and a waste of resources when many sick people need the whole plant including most epileptics.”

It is critical to also mention that low-THC/high-CBD legislation ignores the needs of many other patients who could benefit from medical cannabis, including those suffering from cancer, HIV-AIDS, PTSD, and countless other health conditions that respond to higher levels of THC.

“(This legislation) is so exclusionary,” says Jill Osborn of Massachusetts, whose daughter has epilepsy. “It leaves out so many patients with other conditions and even seizure patients who need different ratios or cannabinoids. How did we get to the point that one condition is more worthy of treatment than another? My daughter’s life is important, but I don’t know that I can support legislation that makes her more important than someone else’s child. I can’t find it in me to celebrate all the lives that will be lost waiting because “we” decided “we” come first.”

A number of other patients, parents, and advocates echoed Osborn’s sentiments in their opposition to the legislation in online support groups across the country.

“I used to think CBD-only was best for my condition until I learned more,” says Dae Aligheri, a registered medical cannabis patient from New Jersey who suffers from neurological complications related to Lyme disease. “I need the entire plant, and that includes CBD, THC, and the other cannabinoids. The Lyme bacteria is an antibiotic resistant bacteria. CBD only treats the symptoms, offering relief, but the THC kills the bacteria, so both are needed.”

WHY AREN’T BABY STEPS A GOOD THING?

While most advocates acknowledge that a more comprehensive bill would be preferable, many parents are celebrating the introduction of this legislation as a “baby step” in the right direction for cannabis reform. However, experienced activists like Brian Wilson warn that baby-steps come along with serious pitfalls.

“With the way the federal government works, we probably have one shot to get medical reform passed,” says Wilson. “I cannot understand the logic of side stepping all of the momentum we all have and putting time, energy and money behind a bill that will help so few.”

Vivian Wilson Photo: Brian Wilson

Vivian Wilson
Photo: Brian Wilson

“We have the New York Times calling for full legalization and we want to back off and shoot for CBD only? The tide is turning and the momentum is there.”

In Pennsylvania, where the bill was announced by representatives from the RoC, local activists expressed concern that their state’s pending comprehensive medical cannabis legislation would be overshadowed by the new push for CBD-only federal reform.

“We are all hoping this will not affect our SB1182, which is whole plant medicine for all who need it including our nation’s vets,” said Louann Speese Stanley, a Pennsylvania mother whose 17-year-old daughter Diana suffers from intractable epilepsy.

“I just have to pray that this stupidity doesn’t get in the way of what states are doing individually – like in Pennsylvania,” read one parent’s post in a state advocacy group discussion. Another Pennsylvania parent sent a message to Ladybud to clarify that “the PA advocates had nothing to do with this bill.”

State Senator Daylin Leach, sponsor of SB 1182, says that he has no intention of letting the proposed federal bill effect his efforts to pass comprehensive medical cannabis legislation in Pennsylvania. “It has nothing to do with what happens in Pennsylvania,” Leach told Ladybud yesterday. “It’s not a perfect bill – it’s not even a good bill – but it comes from an extremely conservative republican. People will just see ‘conservative republican introduces pot bill’ and that’s what people will take away from this. It’s a step in the right direction.”

A public statement released by Pennsylvania’s Campaign4Compassion reads, “We are hopeful that this small step will reinforce the fact that cannabis IS indeed medicine and should be available to all in need. We pray that this measure will serve as an example to other members of congress and we anxiously await federal support for a more inclusive, well-rounded piece of legislation to be introduced.”

While Campaign4Compassion’s response is exceptionally eloquent and diplomatic, many advocates representing other reform organizations took to the internet to air their frustration with Realm of Caring.

“The Stanleys have been around to every high CBD legislation state lobbying like hell because they want a monopoly on the business, plain and simple,” wrote Alabama Medical Marijuana Coalition board member Sonja Franks, whose son suffers from Crohn’s disease and a traumatic brain injury. “They did it here in Alabama for Carly’s Law. Since they cannot ship their products from Colorado, they are going to try to ship them in from another country as “Hemp”…They put dying children on waiting lists instead of giving them a list of other strains and providers. See, in my world, there is enough money to go around, especially if it comes from desperate and sick people. I would be damned if I would withhold that kind of info so I could make a dollar.”

Indeed, the press relase from RoC states that “The ‘Charlotte’s Web Medical Hemp Act of 2014’ in no way federally legalizes the recreational use of marijuana, nor is CBD marijuana.” RoC’s re-branding of cannabis-derived CBD as “not” medical marijuana has already drawn dividing lines in the cannabis reform movement in recent months, and the organization’s comments as well as the trademark symbol attached to every mention of Charlotte’s Web in their latest press releases will no doubt continue to divide the community between whole plant cannabis activists and CBD-activists even further in the coming weeks.

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. Indeed, how would the Stanleys 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.

“I can’t understand why this would be proposed instead of putting all efforts into real reform that can benefit children with cancer, soldiers with PTSD and many more with really debilitating, life threatening/ending conditions,” says Brian Wilson. “The only hope I have for this bill is that it both fails and rallies a stronger effort by the community at large to support bills like HR 689 and HR 710, which would protect states rights to control their own medical cannabis laws as well as federally rescheduling to a lower schedule, removing barriers from states to pass laws.”

Jason David hopes that the proposed legislation will inspire more parents to lobby their elected officials for broader medical cannabis reform.

“I believed in Realm of Caring’s product, and I got caught up in Charlotte’s Web,” says David. “Parents shouldn’t have to put all their chips in one basket. We should be fighting for more options.”

“We are all suffering or have loved ones suffering,” adds Brian Wilson. “Let’s act like a community and fight for all in need.”