I woke up multitasking Wednesday morning. While making the boys breakfast, I bounced back and forth between Facebook and my text messages. In that exact moment, The Senate Caucus on International Narcotics Control was wrapping up their hearing on research and the potential medicinal benefits of cannabidiol. Our community was reacting online.
If you don’t have two plus hours, I’d recommend the last hour or even the last half hour. It’s a good watch. And between all the voices in the room*, my initial reaction was to in fact feel heard. But as the caucus went on and on, that feeling of being affirmed digressed into feeling 100% patronized.
The Question Of The Hour
Dr. Ingram from the University of Mississippi Medical Center summarized the hearing for me with this, “I think marijuana needs significantly more research and CBD specifically needs significantly more research for us to be able to use it in a novel and safe way.” Indeed. This is THE question: In order for us to use cannabis safely, do we in fact “NEED MORE” research?
A Polarized Debate
At the hearing, the case for science was very easily made - only one of the six panel members wasn’t a doctor. But the corollary to this assumes that until big pharma can step in, we are using products that are unsafe. I was very disappointed by the way we were represented with terms like “placebo effect,” “anecdotal evidence,” “snake oil” and everyone’s new favorite “artisanal medicine.” Oh. And we get our health information off social media 🙁 ?
As parents network and organize to learn how to safely use cannabis, we find ourselves redefining the very mainstream presuppositions the caucus reinforced:
Pharmaceutical Medications + Research = Safety
Artisanal Medications + Parent Reports = Unsafe
If only these ideas were true in our reality. Most of the parents I know would swap those outcomes. And not because we are too stupid and emotional to understand and are making unsafe choices without “evidenced-based” guidance, but because the script was flipped for us by our own shitty experiences with mainstream medicine.
Case in point: Elizabeth Aquino’s entire blog is devoted to telling Sophie’s story. And my son’s brain has been saved an easy 6,000 seizures in the past 18 months because of an artisanal high CBD product. From where I sit, it would have been absolutely unsafe to have waited and watched his scarey prognosis unfold.
A Middle Ground
While I appreciate Dr. Sabet wanting to protect us from being sold water bottles labeled with high CBD, I don’t connect to their dangerous characterizations of our options or agree that access should be limited because of these risks. There are simple ways to verify the content of these bottles. There ARE responsible, ethical organizations creating quality products and providing resources that promote safety, including The Realm of Caring, The Flowering Hope Foundation, Cannakids, Canniatric and more.
Where were they at the hearing? Can we hear the voices in the middle ground? Research those of us on the ground level saying “We NEED this NOW” and “We ARE already using it safely” and most importantly “THIS is how we are doing it.”
It completely baffles me that instead of helping families navigate our current medical marijuana system, doctors just flat out discourage them from going there at all. Because lacking science trumps common sense?
Call Me Old Fashioned
I’m an amateur herbalist. So when I started educating myself on what pediatric cannabis actually is, it made easy sense: in the same way that I can put echinacea in alcohol and make a tincture, I can make my own medicine with cannabis. I can also make a strong herbal tea, or “infusion,” more effective for treating my PMS than a cocktail of Naproxen, Prozac, Klonopin and birth control. These are traditional healthcare technologies that have been used through out history because they are simple and effective.
The simple facts are these: I can grow cannabis in my own backyard and, using tools and ingredients found in kitchens across America, I can make my own tincture. (In fact, there are less ingredients and steps than making a lasagne.) I can also take it to my local lab and get the quality and potency tested. I can follow a fairly standard dosing and titration schedule. I can check for drug interactions through blood work. And I can observe if it is working by counting. Since we also know that CANNABIS DOESN’T KILL ANYBODY, I’m not sure why this has all become so complicated.
I also bring up my hobby as an herbalist to illustrate a second point. I think most of us sit somewhere on this continuum:
Mainstream Medicine — Complementary Medicine — Alternative Medicine
The personal core values that determine your place on this continuum are deep seated for good reasons that make sense to you. You either go to Wholefoods Market when you feel a tickle in your throat or to the doctor for antibiotics after its been there a week. Or both. All approaches can be fine and good. But even though I sadly know that continuum actually plays out like a hierarchy, I still have this really naive idea that we can all co-exist on the same treatment team. Or be heard at the same hearing.
Back To Multitasking
While I followed the discussion on Facebook, I was also engaged in a text thread. A single mother, less than two months postpartum, was desperate to access a high CBD for her new baby who has a rare, deadly disease and won’t stop seizing. He is on multiple medications and was just placed on hospice care. The summary of their story is ACCESS NOW.
Who Is This Research For Anyway?
In a lot of these cases, I’m going to be bold and say, “Who cares about research?” And that actually is a switch for me. Statistics STRONGLY directed my son’s treatment plan. And I’ve just initiated a little research project of my own. In the process, I revisited a bibliography I started compiling a couple years ago and was reminded of this study published in 1981. They reviewed research back to 1972 and found in one that “Seven out of the eight epileptics receiving cannabidiol had improvement of their disease state, whereas only one placebo patient improved.”
And then I thought of my friends Beth and Liam and how just their one story got a lot of us into the chiropractor. How many of us have tried diets and frankincense and reiki and hyperbaric chambers because we knew that one kid it worked for? I thought of Jason David, who told Paige Figi, who told . . . and now my son and others are seizure free. I’m surprisingly okay with sharing health information on social media. (I discuss the “evidence-based” stuff there too.)
I also was holding this in my awareness as I both watched the hearing and helped a suffering, new mother: in April the editor of The Lancet, Richard Horton, published his “comment” after a symposium in London on the reproducibility and reliability of biomedical research. It’s beyond disturbing, especially its “comme ci comme ça” delivery. After describing powerful people he cannot name who are protecting alarming data he cannot share, he reports: “The case against science is straightforward: much of the scientific literature, perhaps half, may simply be untrue.”
So I guess the joke is on us. While we sit here. Watching our children suffer. And wait for it.
. . . I feel so heard.
image used with permission by Mallory’s Hope
* Although I did feel like everyone present did have relevant points to make, in my original post I was remiss not to specifically name and thank Dr. Thomas Minahan and Senators Gillibrand, Booker and Hatch for their advocacy. And despite my overall sour tone, I of course am VERY grateful and encouraged that things are moving along.
Elizabeth Aquino says
Ray Mirzabegian says
Good read Allison. Thank you. Yes seems though that The joke is on us. I wish I had a DR. in front of my name too so that I’d be given the respect to sit there and speak about the truth and about us. But who am I. Just Ray. Not Dr. Ray. Director of RoC CA!! To them probably a drug pusher. Not a father trying to save his daughters life and so he did using a plant after all those Dr’s gave up. What a missed opportunity this was by some panelists to speak the truth. Not surprised. They were all Doctors and politicians putting on a puppet show as usual.
Allison Ray Benavides says
I really don’t see how it could have gone any other way. Even though mainstream responses are rarely a surprise, there are just these really poignant moments when it hits hard and all at once and you think WHOA EVERYONE, aren’t there? Wednesday morning was for me. I imagine everyday is for you.
Michelle Sexton says
LOL. . . then I must be an “artisanal” doctor!
Allison Ray Benavides says
I do have a thing for artists. Must be why I like you Michelle.