I'm off to Hedgebrook in the morning, and while I am incredibly grateful and excited, I'm also feeling a little batshit crazy.
I'm not sure what my posting schedule will look like, as I'm told it's best to immerse yourself into the magic of the place with as few distractions as possible. I will, hopefully, get lots of writing done as well as respite and the chance to meet some extraordinary women. I might take photos and perhaps post them each day with something or other to keep ya'll entertained, but there'll probably only be slim pickins at the old a moon, worn as if it had been a shell.
In the meantime, keep abreast of that whole cannabis Big Pharma thing. It's all going down tomorrow in Washington, D.C. when the big guns meet. You know how I feel about it all, and never have I been more sure and committed about an issue. Scroll down to yesterday's post, read, share and join us if you are so inclined. Just click this link: Coalition for Access Now
I miss you already.
P.S. If you want to write me a letter, email me and I'll send you the address!
That's Sophie, and when her mind is clear and the seizures at bay, she can stare right into your soul. New readers should know that despite 22 medications and treatments, Sophie found no relief from tens of thousands of seizures over the first nineteen years of her life. When she began using Charlotte's Web in late 2013, her seizures lessened dramatically and that gaze became ever more penetrating and knowing. We're one of those families you've been hearing about, a family decimated by two decades of uncontrolled seizures, vicious side effects from powerful FDA and non-FDA approved antiepileptic drugs and then a radical reduction when cannbis oil is introduced.
Sophie is not alone. There are thousands of children like her, but they do not have access to CBD.
As her voice, I'm going to talk a little here about what's going on in Washington regarding CBD and hemp. There is a meeting on Wednesday, June 24th to determine the fate of CBD. This is the meeting of Senate members called the Caucus on International Narcotics Control. The Senate Caucus on International Narcotics Control was created to monitor and encourage against drug abuse and narcotics trafficking and to monitor and promote international compliance with narcotics control treaties.
As you can imagine, that's one scary and powerful group of senators.
How would something so benign as CBD end up in their caucus? Here's a metaphor: We're all in a giant swimming pool, swimming in our carefully marked lanes. The Stanley Brothers are just one swimmer in that pool, along with countless other people growing and making hemp products. There's lots of room. Pharmaceutical companies, namely GW Pharmaceuticals, a British behemoth, has a lane, too. They've working on Epidiolex. That's fine. They should have a lane. The really extraordinary swimmers, the lane where all the action is, though, is not this giant pharmaceutical company. The lane that literally came out of nowhere is our lane, and it's made up of hundreds of families whose lives have been changed by CBD -- whether it's Charlotte's Web or any number of strains of high CBD/low THC products. Keep that image in your head.
Here are some facts:
CBD and Hemp should be regulated as dietary supplements due to the very low toxicity (LD:50 (lethal dose rating) of 1:40,000 compared to aspirin at 1:20). These products already fill our store shelves in all 50 states with known amounts of THC (less than 0.3%) and unknown quantities of CBD.
There has already been research to establish that 1500 mg of CBD daily was well tolerated in humans.
17 states have passed cannabis legislation since February 2014. That's 16 months. All but three of those are high CBD/low THC legislation. This is an example of the extreme need of this underserved population.
Who do you think is the strongest opponent of this process?
You do not need legislation to do a clinical trial. This could very well be a serious misappropriation of state and health department funds. Do you want your state paying the tab for a gazillion dollar company?
Here are some more facts:
GW Pharmaceuticals partnered with Bayer HealthCare, a subsidiary of Bayer AG. Bayer was on the original ALEC committee that introduced the original medical marijuana legislation back in the mid-noughties.
ALEC is the American Legislative Exchange Council, and is just one of the ways that Big Pharma lobbyists write and influence laws in their favor.
Hmmmmmmm.
Apparently, GW Pharmaceuticals is fine with cannabis legislation and efforts that would help them to line their pockets, but it's a stretch of the old imagination to imagine them wanting families to get access now to keep their loved one alive, especially if it cuts into their lane.
We're talking about room for everyone, here, a lane for all swimmers. GW Pharmaceuticals wants the whole damn pool.
At risk of sounding like a conspiracy theorist, let me tell you something.
Parents' stories are being discredited. Just think of the disparaging remarks about placebo effects that Dr. Amy Brooks Kayal made on the Dateline special. We are, evidently, a bunch of crazy parents who can't properly count seizures and evidently have voodoo powers to regulate EEGS (that's sarcastic, of course).
Doctors who are supportive of CBD are discredited and frowned upon. There's a party line that is being pushed.
They're using propaganda to destroy the quality of the product, throwing around the term "artisanal" with the implication that we need the pharma model (despite the fact that we've been safely using cannabis for 1000s of years without that broken model)
They're attacking the safety of the product and of the compound in general.
In pushing for more research, they used unknowing and inexperienced families with promises of enrolling their children in the trials to push their agenda.
In pushing for more research, they're pushing the dosage of the product so high in trials that it creates negative events (so far, diarrhea). It seems to me that they need to prove that this can't exist as a dietary supplement.
Expect them to run their public relations and marketing campaigns (the pharmaceutical advertising budget is in the tens of billions) next on the basis of how wonderful their companies are, and insurance companies will follow suit, covering this "orphan drug" that will reap them untold profits.
In the proverbial nutshell, it looks like Big Pharma wants the whole shebang. It wants CBD to be a pharmaceutical. It's some scary shit.
As people who have been hurt again and again by a broken pharmaceutical system, we will not allow this to happen. You can't allow this to happen. If you think you don't care about CBD, that it's a limited component and that CBD legislation is destructive, think again. I hate to say it, but mark my words: these people will come after THC next. Can these powers be more powerful than the people? They are proving to be so.
We are Sophie's and countless other kids' voices, and we're swimming in a very big pool. We might very well get kicked out this week. Please help us fight for access. This is not about THC. That's another very worthy fight. This is about access to cannabis. It's about fighting the power. It's about doing the right thing. It's about being able to look back into your child's eyes and have them look right into your own soul.
Coalition for Access Now *This post was co-authored by Heather Jackson, Executive Director, Realm of Caring Foundation
Did you notice while watching the Dateline special Growing Hopeon Sunday night that nearly every single commercial was for a pharmaceutical or for a pharmaceutical for your dog? Are you at all as bothered by the irony as I? I doubt anyone who wants to be relieved of their incontinence problems, their aching joints or their failure to maintain an erection has to beg their legislator to get relief.
I'm drawing up a few days' worth of Sophie's Charlotte's Web cannabis oil in the above photo. I told Oliver to hold that camera a little higher so you can't see any chins. You can see my Italian peasant woman arms, though, that soft and terribly strong part of my body that I defy anyone to put down as they've served me well as a mother for over twenty years. As you can see, I'm at the end of the bottle which means I can pick up the telephone or go online and order some more from Realm of Caring.
I have access to this lifesaving medication.
Thousands of families don't, though, and are either medical refugees or waiting to get access, at the mercy of politicians. I won't talk about doctors in this post, though, at least the misguided ones. Some people not only live in states without access to cannabis oils but also have doctors who stymie their desire to try it.
Sophie at the late Chris Burden's Ode to Santos Dumont
First, and above all, how rocking cool are those Stanley Brothers? I know it's heretical, especially given their evangelical roots, but honestly, I'd be tempted to follow Jesus and the Apostles again if he were Joel Stanley and his band of brothers. That awesome female biochemist could be Mary to my Magdalene, too.
Secondly, how strong and rocking cool is that Paige Figi? And those women who lobbied the Virginia legislature? And their beautiful kids, the brave soldier with PTSD, the man with multiple sclerosis who threw his bag o'pharms on the floor?
You watched it, didn't you? If you missed the Dateline special, Growing Hope, you can still help out by supporting the Coalition for Access Now.Click on that link, and you'll be able to access your own legislators' emails and telephone numbers to express your support. I myself have just returned to the lobbying efforts. I had a hiatus, mainly because I despise lobbying and fundraising. It's very difficult for me to plead legislators to do the obvious. Unlike Paige and the women profiled on the show, I get stuck and fixate on -- well, for instance, -- what appeared to be an entire Virginia legislature of white men in suits. Those guys did the right thing, but it's so hard that we have to literally beg for this stuff.
Sigh.
I'm girding my loins and calling the very estimable Senator Feinstein on Monday morning. She's decidedly not a white man in a suit, but she's said some worrisome things, and we need to tell her what we know. We need to share our stories. We need to plead with her. We want her to co-sponsor the Therapeutic Hemp Medical Access Act of 2015 (S.1333). Anybody out there who has an in to her office in Los Angeles or San Francisco? Please email me if you do.
Now let's talk about the proverbial thorns in the sides.
Thorn Number One in the Dateline special might be Dr. Amy Brooks Kayal. She's an epileptologist and the present head of the influential American Epilepsy Society. I recently read a letter she wrote to the governor of Pennsylvania, expressing her displeasure over any legislation favoring the legalization of CBD. At some point in the special tonight, she pointed out that parents are subject to the placebo effect and might be over-stating their children's response to Charlotte's Web. You might remember the doc at the Epilepsy Brain Summit that I sparred with said the exact same thing.
It's the Party Line.
I did the same thing that Mrs. Braddock did when Benjamin announced his marriage to Elaine.
The placebo effect argument drives me insane. I understand the power of the placebo effect, and I also find it interesting that the families who uproot themselves and move to states where cannabis is legal reportedly claim more success, but I question that research itself. Has anyone at the University of Southern California Neurology Department, other than my own wonderful neurologist, ever expressed any curiosity about the awesome success Sophie's had with CBD? Have they at UCLA where Sophie was treated for many years? Do they want to know? Has anyone done a study on revolutionary treatments and doctors' stubborn refusal to acknowledge change? When these doctors bring up the placebo effect, it stinks of patronization. I think of deer caught in headlights or steady blinking in the face of light.
They're not used to light. Bless their hearts.
Later, I engaged a bit with some other thorns -- those whoo I guess are called "haters" in the medical marijuana community. These people are, ironically, in the community in that they have loved ones who benefit from marijuana, but they consistently put down the Stanley Brothers, Realm of Caring and Paige Figi. Their concern is that CBD-only legislation will hurt the larger cause of making whole plant marijuana legal. They have some valid points, but they're often strident and make wild accusations. I know they're wrong. Just two years ago, I was wandering around Los Angeles looking for a product to give Sophie here in Los Angeles. We're now about to push through, hopefully, a bill in the federal government that will deschedule hemp, making it accessible to every citizen in every state, regardless of that state's marijuana laws. It's a small step, and it doesn't solve the larger problem of making sure that accessible natural plant medicine, including THC, is available to everyone who needs it. Cannabidiol alone is not a cure for everyone. There is much tweaking, and some people only see success when they add in THC and/or THCa. Some people are on so many antiepileptic drugs that success is elusive. It doesn't work for everyone, but there are thousands of children who need to try the product right now, who literally can't wait for what I believe will be the eventual legalization of marijuana on the federal level.
Enough thorns.
Today, I took Sophie over to LACMA to see the late Chris Burden's installation titled Ode to Santos Dumont. The museum states that the installation pays homage to ingenuity, optimism, and the persistence of experimentation, failure, and innovation. Inspired by Brazilian-born pioneer aviator Alberto Santos-Dumont, widely considered the father of aviation in France, the kinetic airship sculpture was recently completed after a decade of research and work by Burden.
It's a strange and wonderful installation -- a sort of translucent dirigible that is put into motion in some complicated way and then floats around the room for a bit in a constant sixty-foot circle. Sophie and I stood with a crowd of people and watched the beautiful thing float around and around. We were all mesmerized. The explanation on the wall states that if the airship were to deviate from its sity-foot circle, the geometry of the tethers would force the balloon to turn in a smaller, tighter circle, which would cause the motor to work harder. The thing always seeks the sixty-foot circle, the path of least resistance or the sweet spot.
How beautiful and resonant the Ode to Santos Dumont with Sophie, to this work we have ahead.
So, I had the great pleasure last night of texting and private-messaging with my friend Paige Figi, the mother of Charlotte (Charlotte's Web fame) and agreed to help push on Senator Diane Feinstein to co-sponsor Senate Bill 1333, The Therapeutic Hemp Medical Access Act.
I am crazy, I know, to do anything else, but honestly how hard could it be, especially when I have all of you out there to help me.
Here's what I want you to do.
Call Senator Feinstein's D.C. office when you have a moment today and ask her to co-sponsor the Therapeutic Hemp Medical Access Act or S. 1333.
Here's the phone number: (202) 224-3841 Tell the person who answers that this bill will provide access to thousands of families who cannot get this life-saving treatment for their children. The bill will deschedule cannabis-rich products/hemp from Schedule 1. It's a tiny step forward and a HUGE one for our community. Senator Feinstein WANTS TO HEAR FROM HER CONSTITUENTS, SO PLEASE CALIFORNIANS, STEP UP!
Don't forget to ask Senator Feinstein to CO-SPONSOR S.1333.
If you need more information or would like to help get co-sponsors in your state, here's the website for Coalition for Access Now.
