Wednesday, February 12, 2014

On Devinsky and Friedman's Opinion Piece in the New York Times About Medical Marijuana

I'm going to fly through this post with my initial reaction to the New York Times' recent opinion piece on medical marijuana, titled We Need Proof on Marijuana. That means it's what I think on the fly after reading it, in light of my own experience giving Charlotte's Web to my nineteen year old daughter for the last several months. And since I'm a very fast typist and perhaps an even faster thinker, I'm going to slow myself down and number these thoughts. Here we go:


  1. First of all, Orrin Devinsky and Daniel Friedman are huge in the pediatric epilepsy world, and I know both of them. I haven't seen either in as many years as I've lived in Los Angeles, but they are excellent doctors and good people.
  2. I'm immediately put off by the line drawing that accompanies the article -- a Cure All Magical Elixir -- and its implication that there's something fishy going on.
  3. The rest of the piece is patent bullshit and makes me despair again over the vast and seemingly irreparable rift between the professional epilepsy world and the rest of us -- the caregivers of these kids with refractory seizures.
  4. My daughter has been on twenty drugs in as many years and not a single one of them has done anything to control her seizures or heal her in any way. In fact, most of them have caused her harm: discomfort, pain, irritability, anorexia, systemic abnormalities, headaches, ataxia, more and different seizures, nausea and the risk of death. In the short term and over the long term. 
  5. On Charlotte's Web Sophie is now having no seizures for weeks at a time. For the first time in her life. Unless Sophie has been faking multiple seizures a day for her entire life, this is no placebo.
  6. If Sophie were to die, five years from now -- hell, TWO years from now or even several months from now -- because of the "long-term effects of medical marijuana," I would be grateful that she had those days or months or years free of seizures for the first time in her life and in the life of her two brothers who have watched her seize daily for their entire twelve and fifteen years. I am decidedly NOT grateful for the life that the so-called "studied medications" have allowed her to live.
  7. Devinsky and Friedman state their concerns for the long term effects of medical marijuana on the child's brain. I understand their concerns, and I understand it's in their interest -- and the hundreds of thousands of children with epilepsy's interest -- to study this plant, but when they write this: Where is the data showing that marijuana is effective for epilepsy? Although parents may report improvements in their children, it is important to remember that the placebo response is powerful, and the placebo response is greater in pediatric than adult studies. Before more children are exposed to potential risks, before more desperate families uproot themselves and spend their life savings on unproven miracle marijuana cures, we need objective data from randomized placebo-controlled trials I feel the condescension that I have grown to expect dripping from their mouths, the page, the screen, the universe they live in and have lived in as long as I began navigating it on June 14th, 1995. I have an unequivocal lack of confidence in that universe.
  8. I am glad that Devinsky and Friedman are appealing to the federal government to remove marijuana from its draconian place as a Schedule 1 drug, but this train has left the station and, given the tone of this piece, frankly, I don't give a flying foo-foo what the Almighty Neurology World thinks.
I'm not just seeing. I'm spitting stars.


26 comments:

  1. Parents who have watched and lived through what you and Sophie and your whole family have, ARE AUTHORITIES ! You KNOW, and you should be treated as such. You don't need me to tell you to keep going - you are on the right track!

    Sometimes I think the medical/scientific community is simply without heart, without common sense. We're listening, Elizabeth - even if they aren't. And we believe you.

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  2. I was the one who crashed your last post and I thought you'd feel this way exactly down to your thought on that hideous line drawing. Have you thought about a letter to the editor? I really think you should xoxo. Annie

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  3. THIS, If Sophie were to die, five years from now -- hell, TWO years from now or even several months from now -- because of the "long-term effects of medical marijuana," I would be grateful that she had those days or months or years free of seizures for the first time in her life and in the life of her two brothers who have watched her seize daily for their entire twelve and fifteen years. I am decidedly NOT grateful for the life that the so-called "studied medications" have allowed her to live. THIS IS WHAT MATTERS. THE REST IS PURE BULLSHIT. Sweet Jo

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  4. Bravo! You really need to send this to The New York Times. This is a letter to the editor that will turn heads.

    I understand scientific reliance on data, I do. But so-called anecdotal evidence is NOT worthless, especially when it's as clear-cut as yours. (There's no way a "placebo effect" could explain Sophie not seizing. She either is or she isn't. And now she isn't.)

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  5. You absolutely need to send this to the New York Times. I cannot imagine they would not print it. Points 4,5 and 6 are devastatingly compelling, the entire response is powerful testimony, and as for the good docs' assertion that medical marijuana might affect the child's brain long term, my God, are they not concerned about this with the other toxic medications they prescribe? You and Sophie are the experts in this regard. Those doctors need to look to your experience. It is incontrovertible. I can hardly believe the condescension in the talk of placebo effects. Sophie is not seizing!!!! Why won't these doctors wake up??? What on earth is their agenda in holding on to what has not worked? So infuriating! Please send the letter.

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  6. Today and the ability to be comfortable in one's body counts. In my heart and through my senses, I know mmj is helping Adam...in so many ways. I no longer see that paralyzing anxiety from his nonfatal drowning and I see the positive. Fear of long term effects (whatever long term means) is irrelevant. Some old hippies have been stoned on high THC since the 60's and are happier that pigs in shit and healthier....and our kids are not using untested, smoked, pesticide ridden strains from god knows where.

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  7. What Steve Reed and Angella said! You should send it.

    Elizabeth, you teach us so much. You open eyes--you do. And you know that I am a physician--hell, an academic physician--who reads articles and journals every single day. BUT. I also know that much of what we have learned over the years came from talking to people and hearing their experiences. Though it isn't nearly the same thing, Viagra was "studied" as an antihypertensive drug. The study showed that it was a shitty blood pressure drug. But talking to REAL PEOPLE taking the drug showed us that along with the blood pressure being up, something else was up staying up, too. And that was all she wrote. For a lot of people that drug has been a miracle, you know?

    Another thing--our studies also say that tylenol as just as good as ibuprofen for back pain. But anyone who has ever had an aching back knows that that isn't true. Again--that's through personal experience and talking to REAL PEOPLE with REAL BACK PAIN. Your Sophie is a REAL PERSON whose REAL SEIZURES have abated. Good for you for being the advocate for her that you are and, as a result, for a whole world of Sophies. You, my dear, are freaking amazing.

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  8. I agree with both you and the doctors. I think the anecdotal evidence shows that medical marijuana does help and I think that there should be controlled studies done to study exactly how it helps. I can't imagine watching Katie seize every day, all her life but I do know what it's like to watch her anxiety grow every year. Anxiety has now confined her to a wheelchair, to protect others. I also seen marijuana reduce her anxiety and help her to relax. I am thankful for that.

    As for the long term effects of marijuana use, snort, marijuana and it's use has been around forever. We humans seem to have survived just fine using it:)

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  9. My faith in the medical system has gone from very little to almost nothing at this point. It all started years ago when I first started having children and saw the way the system worked in the field of labor and delivery. I am old enough to have seen first one gold-standard belief and treatment for a myriad of problems fall after another. And this is just another bullshit attempt to control the profession, to keep it within the hands of the Powers That Be. Send this letter in, woman. You are as qualified to make a judgement on whether or not this treatment works as anyone on this earth, I don't care how many initials they have after their names. You are Elizabeth Aquino, Sophie's Mother.

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  10. Yes Elizabeth. Send it in. I've been away forever and I'm so glad this is the post I came back to. First, I'm teary with relief and happiness for you and your's that SOMETHING is finally giving your Mermaid some relief. Second, being simutaneously naively believing and darkly cynical my first thought (after jumping up and down and clapping my hands) is which Big Pharm is providing incentives for these two experts to say what they're saying? AND, assuming that medical marijuana is a last option treatment after all other "proven" treatments have been ineffective, how could a placebo effect possibly be an explanation to its efficacy? It's insulting to parents like you who have fought for children like Sophie. Send it in. But most of all big smiles and hugs

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  11. I thought of you the moment I opened to the Op-Ed page. And yes, of course reality matters, right? The only thing I would add is that the placebo effect could explain it—ONLY if that placebo effect had also been present with the dozens of other medications you tried. They were, in fact, placebos. If there's a placebo effect (and if there were in this case, that would be awesome), it would work with all of them. And it didn't. Giving a child multiple, multiple medications is its own experiment.

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  12. Amen, Elizabeth. So glad you wrote this and I hope you'll write the Times as well.

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  13. I think the problem with the article is multiform, but it starts with the graphic. And by this I'm saying that I have a feeling that originally the intent may have been non-inflammatory, because by the end of the article I could understand what the point was, and what the real agenda is of the article itself, and it is really pro-medical community, it isn't really about MMJ and parents, it is about governmental classification and hindrance of research making it harder for the poor, poor author.

    But after you lay in a graphic like that, there is nothing an article can be but inflammatory. It is too suggestive to potential parents reading the thing who already feel tremendous amounts of guilt that they are buying into a Snake Oil mentality. And if it isn't guilt, then it is just weariness because I'm sure already that Mom's and Dad's have to justify to someone...a family member, a friend, colleague,...SOME judgmental fuckhead why they are giving pot to their kid. This just adds fuel to that ember.

    The article has a couple of good key points, the rest you can toss out. My biggest issue is the call for more data 'BEFORE' more children are put at risk. What the fuck does that mean? So we wait another two, three years? What do you do with all the kids currently taking it who are seeing results? Tell them they are no longer allowed? That argument wasn't well-conceived at all.

    And what Diamond in the Window said...we go into EVERY medication with the potential for a Placebo effect.

    Maybe the whole article sucked after all. Perhaps I should revise my statement...

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  14. Are these people receiving incentives from big pharma? I am spitting stars with you. Yes, yes, send it in.

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  15. Two things I gathered from between the lines: the doctors appear peevish that CW came about without their approval, and that CW is the only treatment that parents have ever felt 'hopeful' about. I'm certain after the preliminary diagnosis that parents have been hopeful about every proposed treatment, only to find them useless or toxic. Also I would encourage them to weigh the possible danger of CW treatment vs. the danger of ongoing seizures. I would beg them to stop with the arrogance and just get going with some research. Anon Suz

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  16. You rock! Your writing and your attitude and your grit make this world a better place. Thank you!

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  17. I love you and everything about you.

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  18. Amen, sistah! I, too, felt the condescension and I find it interesting that he thinks that the so-called "vetted" drugs that are supposed to help control seizures have benefitted so many so much. If they had, nobody would be begging for medical marijuana. And while I agree that some more study would be beneficial, the track record of the pharmaceutical companies and the FDA and the CDC is such that I wouldn't trust them unless the individuals running these organizations agreed to suffer the hideous side effects of some of the powerful drugs they have deemed "safe" for years before letting them out into the world. I sincerely hope you and others like you (articulate, caring parents who have fought this fight for decades) raise your voices loudly enough that the authors hear and have to acknowledge you.

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  19. Joining so many others, I hope you send your letter to the NYTimes. "Articulate, caring parents," those of you who are on the front lines and not some controlled study with a lot of money riding on the results are the only people who know the truth of this, who know what to value most. As always, I admire your passion for your family, for life, for what is right and your willingness to speak it, no matter what. xo

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  20. Spit those stars. Elizabeth, I hope you pursue this. Call these doctors. Call a news outlet. Invite the doctors to L.A. I will personally greet them at the airport and chauffeur them to you and Sophie if you would like. This is big. Bigger than I can imagine. My heart pounds. Send your letter. Yes. Follow your passion, your compassion, your intelligence. xoxox

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  21. What everyone is saying: send this in to the NYTimes. Sophie's life is the data. I believe you if you say that these are good men, but they've fallen down some rabbit hole of irrelevancy with regard to their own research. There is more than one way to get at the controlled studies they want. They are becoming part of the problem, not the solution. Well, unless this op-ed causes an uprising. May it.

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  22. "I have an unequivocal lack of confidence in that universe."

    Yes, I've long given up. So glad Sophie is doing so well on her CW.

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  23. Thanks again for standing up against the Wrong Thinking members of the medical profession and the always self-serving Big Pharma industry. Keep saying it loud and strong. Send it in. We believe in you. x0 N2

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  24. You write it well. You have that gift. I know you must get weary of fighting but Sophie is so lucky that you have persevered and have won her this respite.

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  25. i know you must be tired of battles, but do send this letter to the paper, and also to the authors.

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  26. Adding my voice to the many requests here to submit to the NYX.
    Tell them.

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