The Epilepsy Pipeline Conference Live Stream Link

If you'd like to see any of the goings-on at this weekend's Epilepsy Pipeline Conference, you can click on this link and do so.

I will be participating on the medical marijuana panel on Saturday morning. The time on the schedule is 10:40 am Pacific Coast time. While I don't anticipate any gladiatoring, I am a tad nervous as it's a sold-out crowd and we all know that the Powers That Be are not all as supportive of these new developments as we wish they'd be. I keep repeating to myself that I only have to tell my story, tell Sophie's story, our Truth, the Truth, and it will be powerful enough.

Good thing I'm a pacifist and believe in civil disobedience.

Yikes.

My Thoughts on the Fly: Sonjay Gupta's WEED 2: Cannabis Madness

from Spike Lee's great movie Do the Right Thing

My initial thoughts on the CNN/Sonjay Gupta special on medical marijuana because I can type faster than I can talk:

1. No one spoke about the dart board game that neurologists currently play with epilepsy drugs. I've had doctors tell me that prescribing epilepsy medication is "just as much an art as a science." 
2. I think any shred of hope Governor Chris Christie had to be President of these United States is officially dashed. I've always loathed the guy, but I have to say I felt almost sorry for him given how CNN chose to edit his parts in this story. Yikes.
3. Many emotions going through my head -- the obvious whys and what ifs for our Sophie, anger that political bullshit has stymied this perhaps revolutionary treatment for our children, cynicism that Big Pharma is chomping at the bit, dismay that people weren't really educated on this special about the often devastating side effects of current epilepsy treatment, including surgeries like hemispherectomies. Seriously, people -- how many people do you think are walking around with one half of their brains that knew what the long-term effects of this might be?
4. Grateful that after working our asses off educating ourselves about medical marijuana and finally getting it (thank you Realm of Caring, Ray Mirzabegian, Jason David and the Stanley brothers, Sophie is doing PHENOMENALLY WELL. She was having up to five tonic-clonic seizures a day and hundreds of myoclonics and partial complex episodes as well as atonic drops. She is now going literally WEEKS WITHOUT A SINGLE SEIZURE, and when she does have one, they are much less severe and she recovers quickly. We have been able to begin weaning her from one of the most addictive anti-epilepsy medications in the arsenal, and it hasn't been nearly as difficult as it has been in the past. (Sophie has had trials of nineteen drugs in her nineteen years).
5. Our family is in a sort of state of shock about all of this, I think. We kind of don't know what to do with ourselves. When I watched the special, I teared up a bit for Vivian and her family, but my heart was broken for my family, for my boys and for Sophie, who have endured this shit for so many years, as well as so many other families.
6. What the hey, Obama: DO THE RIGHT THING.

Medical Marijuana, Endearments and The Washington Post

At the Ballard Chittenden locks, Seattle, Washington
February, 2014

This morning, I opened an article in The Washington Post with this title: 'Mommy Lobby' Emerges as a Powerful Advocate for Children. I wouldn't be going out on a limb, here, when I state how demeaning I find this title, much less how inept. First of all, I worked for years as a parent expert with national organizations dedicated to improving the access to and quality of healthcare for children, and as both a leader and collaborator with other parents and a mother of a child with special healthcare needs, I can state with much confidence that most of us don't like to be called mom or mommy by the medical establishment, much less a newspaper. Secondly, the lobby consists of fathers, too, particularly out here in California where single fathers of children with severe epilepsy have served as pioneers for their children and their access to medical marijuana. The fact that this lobby of impassioned parents is reduced to the title mommy lobby underscores some of the most frustrating problems with our hierachical medical/pharmaceutical establishment, particularly the lobby's need to nearly BEG for something to happen.

The rest of the article is informative in parts, but not one single mention of the relative inefficacy of FDA-approved drugs for tens of thousands of children with epilepsy is mentioned. I didn't see a single mention of the combinations of drugs that our children are subjected to, either, their often vicious side effects, and the FACT that many of them have mechanisms of action largely unknown. It would seem, by the article, that mommies are standing in front of legislatures all over the country and begging for lawmakers to help them to save their childrens' lives and their families' quality of life, while other mommies are heroically dropping this scary, unknown substance into their witless children's mouths. Nowhere in the Washington Post article is any sort of acknowledgement or even deference to the grotesque inadequacies of current treatment for refractory epilepsy, the labyrinth that many parents have navigated to get "approved" treatment, the serpentine path from diagnosis to adequate care, nor the enormous expense of the almighty FDA-approved medications that our physicians have, basically, thrown at us after a selection that conjures images of a dart game in a bar.

I don't have any answers to this and feel blessedly grateful that I live here in California, was one of the first people to obtain Charlotte's Web for Sophie and that it has helped her dramatically. I will tell you that I feel increasingly enraged, if not surprised, by the response of the medical establishment and the media to this groundswell. I'm powerful, but I'm not a mommy, and because this is my blog and my platform and not a reasonable place where I have to work rationally in front of the Powers That Be, I'll tell the Washington Post this:

You can start by speaking with veteran parents of the epilepsy world about what they've experienced for decades. You can acknowledge that parents begging for treatment from their legislators is ridiculous. You can stop using phrases like mommy lobby.

Oh, and as the incomparable actor Matthew Mcconaughey's character says in Dallas Buyers' Club (who fought similar battles during the early AIDS years): Fuck alla ya'll.

Medical Marijuana Update: IN TAH RESTING

With cannabis, it’s probably best to expect the unexpected. That said, legalization should be an important priority given the pernicious side effects—or main effects—of marijuana prohibition. Marijuana prohibition is a venal and dishonest policy that has fostered crime, social discord, racial injustice, police corruption, and drug abuse itself, while shredding the Constitution and impeding medical advances. The science strongly suggests that ending cannabis prohibition would be a net positive in terms of public health.

Martin Lee, from AlterNet's "The Potential Miracle Element in Cannabis that Changed Sonjay Gupta's Mind About the Power of Pot"

You can read the rest of the interview here. 

I have nothing new to report on our own medical marijuana front as we are patiently waiting for the stuff to materialize here in California. Why we're in this position is  (perhaps arguably) very much the result of drug policy in this country, beginning with the head of the Federal Bureau of Narcotics in the 1930s, exacerbated by the Nixon administration in the 1960s and 1970s, further escalated and metastasized by the Reagan administration and currently perpetuated by the Obama administration. Kevin Sabet, Obama's former drug policy advisor, is a diehard marijuana prohibitionist, and according to Lee, Sabet maintains that anyone who might benefit from CBD must wait until Big Pharma figures out how to monetize marijuana’s components.

Whether Lee's statements are incendiary or not, we have to wait. In the meantime, Sophie's seizures have ratcheted up so much that I suppose I'll have to shake myself out of the dissociative lethargy and hopelessness that I currently feel and call The Neurologist.

Drug Mule, Part 3,456,896 in a series**

Good Lord, ya'll!

I think I've graduated from drug mule to racehorse! I found out about a non-profit organization that gives grants for certain medical conditions to cover unaffordable medical costs, so I applied and received word that we will be receiving financial assistance for the costs related to Sophie's diagnosis. This means I'll be able to go to our local Rite-Aid and pick up the Onfi prescribed to Sophie instead of engaging the help of Canadian friends. I heard about Caring Voice Coalition, ironically, from a representative of the drug company that makes Onfi. He got my number from our neurologist who has been busy helping me to figure out a way to get this drug to Sophie without resorting to swallowing tiny packages of it and slipping over the border that separates The Sane from the Insane (that would be Canada and the United States). My first reaction when The Man From Big Pharm called was to pull out my breadstick and start taking deep inhalations. Let me get this right, I remember saying to The Man From Big Pharm, instead of lowering the cost of your drug so that normal people can afford it, you donate tens of millions of dollars to non-profit foundations to pick up the cost of said drug? The Man From Big Pharm laughed uncomfortably and told me that age-old expression that Little Men and Women of Industry are all trained to say: I understand your frustration. Reader, you know me so I'll leave it to your imagination what the rest of the conversation entailed. I eventually thanked The Man from Big Pharm for listening to my tirade, took down the name of Caring Voice Coalition, sighed and moaned for a bit about the insanity of it all and then investigated, filled out the application, sent it off and waited.

Good Lord, ya'll! We did get the grant -- a sizable one that will cover the expense of Onfi for the near future.  I just have a few more papers to sign, some telephone calls to make and I think we're set! I am grateful for the help of our neurologist in pleading our case with Big Pharm. I am indebted to the two Drug Mules that brought Sophie's medication from The Sane across the border to The Insane. I am filled with gratitude for the sweet, efficient woman assigned to our case at Caring Voice Coalition. I'm even a tiny bit thankful that The Man from Big Pharm allowed me a holy and righteous rant. I'm also grateful to all my readers here and just know that you'll allow me to continue being a bit mulish about Big Pharm in general.




**If you're new to this blog and want the back story, read where it all started and my favorite post  HERE. Then read HERE and HERE. If you search for all my posts that contain the words "drug mule," you'll find a veritable bonanza.

Shame on You: Episode 3,234,678 in a series

In his inaugural address, Barack Obama said the commitments we make to each other through Medicare, Medicaid and Social Security don’t make us a nation of takers. But the actions of Amgen and its cronies under the dome on Capitol Hill show who the real takers are — not those who look to government for support in old age and hard times but the ones at the top whose avarice and lust for profit compel them to take as much as they can from that government at the expense of everyone else.

from Big Pharma Buys Off the Senate by Bill Moyers 

You know my little story of Sophie's anticonvulsant -- the drug clobazam (known as Frisium outside the U.S. and Onfi inside) -- that costs $63 for a one-month supply if I buy it in Canada and nearly $1,000 if I buy it here in the United States ($500 with Sophie's private insurance policy)? It's such a small, small story if you compare it to the one I read about today, a story of cronyism and corruption and grievous ethics that makes your fingernails curl. In a nutshell, the enormous for-profit biotechnology firm Amgen (that, among others, manufactures a profitable drug for those on kidney dialysis) used its team of 74 lobbyists in Washington, D.C. to sneak in a huge loophole in the recent fiscal cliff deal that gives the company two more years of relief from Medicare cost controls for certain drugs for patients on kidney dialysis. Three senators, two Republicans and one Democrat, evidently "hold heavy sway over Medicare payment policy" and all three -- surprise, surprise -- have "received hefty campaign donations from the company whose bottom line mysteriously just got padded at taxpayer expense."

You can read about the whole pile of sh**t, here.

Shame on Amgen.
Shame on Senators Mitch McConnell, Max Baucus and Orrin Hatch.
Shame on Big Pharm and its lobbyist henchmen.
Shame on all those who support this shit, whether you're a government employee, a consumer with shares in these companies, a lobbyist for Big Pharm, a drug manufacturer, an apologist for the grossest inequities in our country or someone who just doesn't want to admit that money rules.