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.
I'm not done chastising Dr. Amy Brooks-Kayal and her ridiculous statements made throughout the Dateline special Raising Hope that we all watched last night. I've been mulling over them all day, to tell you the truth, especially while pushing my daughter in her wheelchair through the leafy streets of my neighborhood. We cut a tiny amount of Sophie's Onfi about three weeks ago, and just as it's happened every time we've weaned, she's experiencing some dreadful side effects. These include agitation, discomfort and excessive drooling. She has a tremor and some weakness, as well as what I call withdrawal seizures.
I almost don't want to repeat a couple of Brooks-Kayal's statements because they were so -- let's call a spade a spade -- stupid. Beyond the usual call for more research (which we all want and which wouldn't be going on at all if a shitload of parents hadn't initiated this whole thing), she made some patently false claims about the Powers That Be concerns. She wondered what if it helps the seizures but makes your life worse? Even allowing for bad television editing, that was a loaded sentence that makes a mockery of the suffering our children have endured. She dismissed anecdote quite smugly and spoke of the placebo effect. My regular readers might remember that this line of smuggery was directed at me when I participated on a cannabis panel at the Epilepsy Foundation's Brain Summit a couple of months ago. I imagine that some of you might have thought that my emotions ran high, that a lot of our objections are knee-jerk ones. Surely these people aren't that arrogant? you might have thought. I'm secretly glad that Brooks-Kayal said what she said last night because it affirms what many of the people involved in this fight have experienced. These people really do think these things or they are, at the very least, spouting a party line.
Read the post that I quoted from above, written by my friend Mary Lou Connelly. She has a 30 year old son who has had refractory epilepsy for most of his life and who currently benefits from cannabis.
Another friend emailed me the following comment in response to my earlier post and after she herself viewed the Dateline special. She was puzzled by the doctor's comment about the placebo effect:
The way it was employed is sort of a misnomer. Placebo effect would mean the seizures stop because of belief in a substance. Which would be pretty impressive and hopeful and something to explore. (Is most certainly something very under-explored in general.) But what is really being said is that parents' observations are inaccurate. Researchers' observations can be biased as well, obviously --- hence double blind studies. But the adversarial rhetoric of this sort is absurd, because any drug that is used off-label, and there are lots of them, is used on the basis of reported experiences, AKA anecdotal. Neither placebo nor anecdotal should be used as pejoratives. It's all information.
I couldn't have said that better myself.
Out of the 20 drugs that Sophie has been on in her twenty years, more than three-quarters of them were used off-label. During the hundreds of visits I've made to our neurologists' offices over the years, I've "reported" how things were going. The doctors have always studiously taken notes. I tell you what. It's becoming more and more difficult to take any of these people seriously. Dr. Brooks-Kayal is the head of the American Epilepsy Society, an extremely influential organization. Because I'm a woman with a tiny little mother mind,™ I'm going to throw out the words Big Pharma, Medical/Industrial complex, money, money and more money and just -- well -- wonder.*
*And those of you who like myself don't watch much commercial television were probably bowled over by the amount of commercials that ran during the program and their length. Nearly every single commercial was for a pharmaceutical, including a drug for your dog. It's enough to make you want to go off-grid.
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.
