|At the Ballard Chittenden locks, Seattle, Washington|
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.