The Gig Economy

In Ring Three of The Greatest Show on Earth:

So, in keeping with the general zeitgeist, Sophie will be driving Uber from here on out. That's because she needs to start pulling her own weight and stop taking hand-outs. She's a drug addict as well and needs to take responsibility for her actions. As her parent and primary caregiver, I do, too.

We just received notice that our private insurance company, Blue Shield of California, is jacking up our plan 40%. According to my very experienced and reasonable broker, it's due, in large part, to the sabotaging of The Republican President (that's what I'm calling him now as he was voted in by those people and is tolerated by those people and is supported by those people) over the last nine months. Yes, it's a whole lot more complex than that, and premiums for private insurance policies continue to vex the greatest minds, but that's what They should be working on. But, hey, what do I know? I certainly don't want the gov'mint coming between me and my doctor.

I've come to the conclusion that Sophie is over-medicated, that her brain has been damaged by long-term usage of benzodiazepines and so we must continue to wean her from it.

In the meantime, I will be shelling out even more of a co-payment for the benzo due to new health insurance rules that only allow a 24 day supply instead of a 30 day supply (something about the liquid form and not being able to open a bottle or give part of a bottle) and so that means more money for the drugstore and the drug manufacturer and the insurance company, more money because the drug, ineffective in controlling seizures, is powerfully addictive and could literally kill Sophie if stopped. We are, basically, slaves to it and to the whole shebang, the Greatest Show on Earth.

Hence, the Uber gig. Who's driving with us? We're thinking we can fill it with clowns and drive it over a cliff.

Disruptive Women

I periodically check out an organization called Disruptive Women in Healthcare to see what's going on.  Despite the fantastic name, it looks a tad too corporate/non-profitty for me (that's how disruptive I tend to be), so I've never looked into joining it. Anybody out there on the interwebs who's a member of Disruptive Women in Healthcare?

I'll show you disruptive.

I think Sophie's name and persona is being used for MediCal fraud. This weekend I got a stack of papers, including 5 Explanation of Benefits for services rendered three years ago on arbitrary dates for arbitrary amounts of money. The provider is The Department of Children's Services. The insurer is HealthNet. The dates were all in the fall of 2014, and we did not go to a doctor on any of them. We've never used HealthNet, although straight MediCal might have once. The Explanations of Benefits came in a big packet, each one followed by the exact same sequence of nine pages with language translation information and my "rights." That was 45 pieces of paper in the envelope, only 5 of which were the actual business at hand. Bear with me.

Don't be disruptive. Just listen.

Because it was Friday, and because I am disruptive, I decided to call the number on the sheets of paper and ask what the hell was going on. I spoke to four different persons in nearly two hours -- let's say their names were Rhonda, Wanda, Larry and Jill. Rhonda was the quickest to bump me off to Wanda who was the type of service professional you can imagine staring at a Service Manual and reading the script best suited for Disruptive Women. Whenever I said "thank you, Wanda," or "Ok, Wanda," she said, "No! Thank YOU!" and we might have gone back and forth for hours with pleasantries if I weren't so disruptive. I won't even tell you how apologetic she was every time she put me on hold and popping back in periodically to make sure that I was all right. In the end, Wanda sent me to Larry who -- quite literally -- FREAKED OUT. When I explained my "problem" to him for the second time (the first time, he kept insisting that he was trying to help me but kept asking me really stupid questions, so I admit to being impatient), in my most disruptive voice, he said, "Whoa, whoa, whoa. That sounds like something really big. Really big." Larry was undone and advised me to call the Ombudsman. He said Ombudsman in a tone of voice that conveyed the mystery of The Wizard of Oz and then, very, very solicitously spelled it out for me. Because I'm disruptive (and perhaps a teensy tinesy bit stressed), I actually interrupted him at that point and said, Larry, I KNOW what an Ombudsman is and how to spell it thank you very much. Larry and I said our good-byes, and at  approximately 4:54 pm, I called the number Larry gave to me and spoke to Jill who got a gold star for even picking up the phone so close to closing time and then after the first explanation sighed and said that I would have to call the fraud department of MediCal on Monday morning.

Are you still reading?

I put my finger to my temple and did a Rodin pose and then recalled a similar stack of papers that I received earlier in the year or maybe last year with a whole lot of weird amounts of money paid out. There was one in there from 1999, when Sophie wasn't even a recipient of MediCal, so I called then and reported "fraud" and maybe even wrote a post on the old blog about it. Because I'm a disruptive woman in healthcare and mighty efficient, I pulled out that stack of papers and found my notes. Needless to say there has been no follow-up, and now I'm facing a Monday morning call to the Fraud Department.

The most disruptive thing I'm thinking at this point is who would want Sophie's medical identity, anyway? What would be great is if we could just switch with someone healthy milking the system and really go to town on the amazing benefits.

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.

Things to Think About

Last night, I joined Tanya Ward Goodman and the poet Helena Lipstadt for a reading at a very cool independent bookstore in Echo Park. A small, intimate crowd came, and we sat outside in a funky light-stringed courtyard behind the store. I can't tell you enough good things about Tanya's book Leaving Tinkertown, and even though I've read it in different incarnations over many years, it's still a thrill to hear her words. Helena is a new friend whom I met in my new writing group, and her poetry is so intelligent, lyrical and powerfully erotic. I read a few of my How We Do It posts and realized as I was doing so, that they might make a book if they are strung together in some skillful way. I need to get on that.

Other thoughts today concern my struggles with obtaining a better health insurance policy, how I'm realizing just how insidious the tentacles of the Insurance Industry really are --at least for those of us in the independent market. A few years ago, when the whole healthcare reform movement began and the rumblings started about Obamacare, I wrote of how ridiculous it would be to "shop" on the free market for healthcare. You can read about that here.  I'll give you a moment, because it's pretty prescient, if I do say so myself.

Are you back? What I'm finding is that while I can certainly add Sophie to our individual policy  because the ACA has done away with the preexisting condition clause, the drugs that she takes are not on the formularies, and I'm terrified that we'll have to go through some crazy labyrinthine system to get those drugs covered. If you can recall from my Canadian drug mule days, we finally found a non-profit foundation that picks up the co-payment of one of those drugs, but the other one is equally expensive and was only covered after months-long wrangling with the insurance commissioner and my local congress person. For those of you who have written me with the suggestion that Sophie go on Medi-Cal, well, she is, secondary, and those drugs are not picked up by them either.

Hey, like The Tan Man says, The United States has the best healthcare delivery system in the world.

Why the hell do we not have a single payer system? Why the hell is socialized medicine a less attractive alternative to a plutocratic system?

What a clusterf#*ck.

I'm also thinking about the Congressman from Virginia who was stabbed by his mentally ill son who then shot himself and died. Evidently, the son had been admitted for mental health treatment earlier in the week, but a bed wasn't available for him.

Again, let's recite the powerful Tan Man's mantra:

The United States has the best healthcare delivery system in the world.

That being said, Michael Tomasky has a great, brief piece on how the Affordable Care Act addresses mental health coverage for the first time in history. You can read that here.

Finally, ya'll might want to come on out and visit the estate sale of Dr. Arnold Klein, the dermatologist who worked on the face of Michael Jackson. He lives in my neighborhood (the fancy part), and evidently his estate will be liquidated over the next four days. Rumor has it that an extensive collection of Star Wars memorabilia, as well as Picassos and other celebrity crap will be auctioned off. There's a line snaking out the door as I type.

Good Lord.

Reader, what are your thoughts today?

Favorite Comment of the Week from a Blog Post

The other day, I asked you readers what you felt insane and bitter about, and the replies I got were fantastic, but the one received today said it all:

I am laughing bitterly at the fact that I could easily get the kind of pot that spikes my seizures in the next half hour from Brian, the dude down the hall in my dorm that my friends and I have affectionately nicknamed "Salty Jesus," due to his hair's continual beach-swept, biblical appearance. But after more than 10 medications, a diet and brain surgery, I can't legally get the marijuana that could help my epilepsy. All hail the American medical system. 

Yes, Anonymous:  all hail the American medical system. I don't appear to be any closer to getting the CBD for Sophie despite having researched myself into near-expert knowledge. I guess the only thing to do at this point is wait.

I'm waiting.

How I look when I'm on hold with Anthem Blue Cross

I'll blame the jowls on them, too

and the dark circles.

Yesterday's joust with the most loathed company in America came about because I wasn't properly reimbursed for Oliver's recent twelve year old check-up. Evidently, the doctor had checked off the Age Range 12-17 box on the diagnostic code list, and the Date of Service was May 9, 2013 which made Oliver 14 hours younger than Age 12 (he turned twelve on May 10th) and therefore not reimbursable because he was STILL ELEVEN AND NOT YET TWELVE. Got that?

I'm not kidding you, folks.

After that phone call, my jowls hit my cleavage, and there they swing.