Saturday Resistance -- Hear Me Out If You Care About Sophie and People Like Her

I take care of Sophie at home with the help of her father and a part-time babysitter because of a Medicaid waiver that she qualifies for given her cognitive and physical disabilities.She has been "deemed" a person "qualifying" of "institutional care." I am basically paid to take care of her at home, saving the government -- taxpayers -- a considerable amount of money to care for her in an institution. Those are the bald facts. We are, in a capitalist society, reduced always to a number. It saves you money to honor this social contract.

If the Affordable Care Act is repealed, this ability to care for Sophie will be severely compromised. Please read the following email that I've cut and pasted in full to learn more about what's going on for America's disabled and chronically ill.

If you can, lend your voices to the resistance.

I know many of you reading this blog are conservative voters who live in states that are gung-ho bent on destroying the Affordable Care Act. Perhaps you don't realize that despite its imperfections, it has also lent stability to millions of families like mine. Yes, we do struggle with rising premiums. We do struggle with the systematic denial of medical claims. We struggle with the ungodly amounts of money charged for pharmaceutical drugs. I am paid minimum wage to care for her at home, an amount far inferior to that which I might earn in a full-time career. I also struggle to care for Sophie without going insane, to tell you the truth, because it's just brutally hard to do what we do every single day for decades. Sophie's recent 5-day hospitalization cost more than $150,000. That would have bankrupted us if not for the Affordable Care Act and her Medicaid waiver, and I live in a grotesquely over-priced tiny bungalow in an economically rich neighborhood in Los Angeles. I have family that helps me to pay for relief, too. Unlike most people in similar circumstances, I have enough money to get therapy to help me to deal with the caregiving, with the constant stress of seizures, with the possibility of Sophie dying before me or dying afterward.

I'm telling you this to emphasize just how life-altering it was when the Affordable Care Act passed, even with all of its absurd complexity and kow-towing to the big insurance companies. The pre-existing conditions component, the lifetime maximum component, the preventive care component, the birth control component -- shall I go on? Our family was careening toward serious financial difficulties and running the risk of going uninsured before the Affordable Care Act was passed. Sure, we might have been "saved" by family, we might have taken the risk to have no insurance at all. I don't know. What I do know -- again -- is that I have plenty of resources, both financial and emotional and that many, if not most, of my fellow caregivers, their children and families, do not. So I'm advocating for them, really, far more than myself.

Even if none of this comes to pass, if the draconian machinations of Eddie Munster, Drumpf et al come to nothing, if the "replacement" even happens, the psychological distress that many of us are feeling right now is really difficult to convey without sounding whiny, maybe, or privileged. Then I remember what the hell we've all been doing, how much we fought for the ACA to begin with and how we have to do it all over again, even as we continue to advocate for and keep our children ALIVE.

If you can, lend your voices to the resistance.

Read this:

ICYMI: ANCOR Urges Congress to

Protect HCBS as Changes Begin

 

Alexandria, VA – Yesterday, the 115^th Congress approved a budget resolution that sets the stage for the repeal and replacement of the Affordable Care Act (ACA), and allows for changes to the Medicaid program. In response to this action, ANCOR responded with a statement urging Congress to protect the HCBS Medicaid program, and to consider the widespread effects any alterations to the ACA and Medicaid would bring about for people with intellectual and developmental disabilities, and their loved ones.

 

ANCOR has also alerted its members – community service providers to people with intellectual and developmental disabilities – about the vote, and encouraged them to relay these consequences to their representatives and senators. 

 

ANCOR CEO Barbara Merrill responded to yesterday’s vote with the following statement:

 

"Now is the time we must weigh in and let Congress know that individual lives depend on the Medicaid home and community-based services system, and that no changes should even be considered until stakeholders like ANCOR see what the proposed changes are."

 

See below for ANCOR’s statement in its entirety.

 

 

“Today, the 115th Congress concluded their approval of a budget resolution that sets up the mechanism for Congress to repeal and replace the Affordable Care Act and also, through a process called reconciliation, make changes to the Medicaid program.

 

These changes include moving forward with proposals to transform Medicaid to a block grant or per capita cap program. Republicans, who hold the majority in both Houses of Congress, have indicated their intention to move forward quickly with this plan.

 

‘Now is the time we must weigh in and let Congress know that individual lives depend on the Medicaid home and community-based services system," said Barbara Merrill, ANCOR CEO, ‘and that no changes should even be considered until stakeholders like ANCOR see what the proposed changes are.’

 

ANCOR sent an alert this afternoon to its members – community service providers to people with intellectual and developmental disabilities – and urged them to contact their senators and representatives to ensure they understood that decisions to alter the Affordable Care Act or Medicaid as a whole have direct, and at times immediate, consequences for people with intellectual and developmental disabilities and their families who rely on home and community-based services.

 

‘The Affordable Care Act includes the creation of innovative and effective programs, like the Community First Choice Act, which have strengthened the Medicaid program and improved the ability of states to provide quality residential and day services for individuals with I/DD,’ explained Esmé Grant Grewal, Senior Director of Government Relations for ANCOR. 

 

‘The Medicaid HCBS program, while not perfect, is essential to making sure that hundreds of thousands of individuals with disabilities can live in the community. Historically, when states needed help in shifting children and adults with these disabilities out of large and isolating institutions, the HCBS program was created as a federal and state program to support that need.’

 

ANCOR urges Congress to engage stakeholders when considering changes to the Affordable Care Act and Medicaid, and offers itself as a resource to any Congressional office.”

ANCOR is the American Network of Community Organizations and Resources. 

The Anthem Bonfire Party

February 1, 2014

Dear Customer Service,

I have made repeated attempts to get in touch with you regarding my daughter, Sophie XXXX's  Anthem Blue Cross membership, but I have been unable to get through to a human for some time. I understand how busy you’ve been with changes because of the Affordable Care Act, and I am taking this opportunity to inform you that Sophie will no longer be a member as we have decided on a different and better health plan for her and for our family.

Please cancel Sophie XXXX's membership. Her ID number is XXXXXXXXX.

I will also take this time to let you know that our affiliation with Anthem Blue Cross has never been anything but a frustrating nightmare, that you have caused great anguish and stress for our family over the past decade and that we are beyond thrilled to be rid of you. I can only hope that your company will learn to be as ethical as you are profitable, but I imagine these are high hopes, indeed, and I don’t pretend that a small customer like ourselves will make much difference leaving your business.

Sincerely,

Elizabeth Aquino

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?

Where parenting, politics, disability, poetry and politics intersect

So, yeah, go ahead and complain to me again about a (temporarily) glitchy website. Fact: many historic American achievements have been preceded by mistakes far more harrowing than a flummoxed website.

Bob Cesca (read the full article, here) 

In all this talk of miracles and healings, with postings of poetry and naked dancing, I haven't spoken too much of politics lately, except for the occasional jab at the difficulties we are facing in the epilepsy community with getting medical marijuana for our children and the draconian federal policies governing it.

So, where's the politics at a moon, worn as if it had been a shell? Now's the time for those of you who abhor them to click off, drop away, go back to your peaceful day. I'll give you a sec.




Peaceniks and Tea Partiers gone?

OK.

I want to talk about healthcare and the Affordable Care Act or Obamacare, particularly all this brouhaha over cancelled policies and the POTUS lying about it and the government comin' between me and my doctor (thick southern accent here, please) talk, etc. etc. First of all, there aren't many people who supported healthcare reform who weren't disappointed in how the Affordable Care Act shook out. Those of us in the individual insurance market who had any sense at all were perfectly aware that the Obama administration compromised mightily with the insurance industry in order to satisfy not only that Evil Empire but those who rattled their sabers about socialized medicine, about the slippery slope to European style government and hell and damnation. The Affordable Care Act was a HUGE compromise and far less than the universal coverage most of us on the "left" had hoped would happen. I perhaps cynically don't believe that real universal coverage will ever happen in this country because we're not sophisticated enough, as a rule. I'm in the group that believes the ACA made some monumentally positive changes, though, that will improve the lot of tens of millions of people, including our family.

Yes, we were one of those families that got the letter from Anthem Blue Cross stating that our policy would be terminated as of January 1st, 2014 because it was out of compliance with the law as outlined in the Affordable Care Act.

Let me translate that for you:

We at Anthem Blue Cross will no longer be able to provide you with one of the shittiest, most expensive health insurance policies that we offer because if we do, we will have broken the law. We can no longer deny that you add your epileptic daughter to your policy. We can no longer cap out our expenditures in the event another member of your family develops a disease or has an accident warranting millions of dollars of healthcare. We can no longer deny coverage for preventive care. We can no longer force you to pay ever-increasing premiums that buy you catastrophic health care ONLY. In fact, this shitty policy for which you've paid tens of thousands of dollars over the last nearly twenty years of your life only proved to us that you were as stupid and lemming-like as we could have hoped at the time. That time, sadly for us, is over. BUT, we're happy to inform you of your other choices, which might cost you more but be of improved value. 

Now, I'm as nervous as the rest of you, but I've been on the California website and have figured out that our family might qualify for a federal subsidy so that our monthly premium won't be as high as it is now. I've also figured out that if it is higher than what we pay now, it will be far more comprehensive with far more choices, and most importantly of all, Sophie's shitty policy can be cancelled and she can be added onto our own. I still think the Evil Empire (insurance companies) make out like thieves, and I still believe universal healthcare should be the rule of the land, but anything, anything is better than what we have now, and the ACA appears in many respects to be an improvement.

Now, I'm tired of typing. Read this article.

Tell me what your experiences have been.

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.

Project Access Learning Collaborative: A challenge

So, I'm feeling bright and chipper, a far cry from my earlier-in-the-week self when I nearly died on the airplane coming home from a business conference. I swear it wasn't hyperbole, either -- I must have had some sort of near-deadly 24-hour virus.

Anyway.

I work part time as a Parent Lead for a group that participates in a collaborative called Project Access. Teams from across the country, funded by grants from the federal government, participate in unique projects to improve the access to and quality of healthcare for children with special healthcare needs. Project Access works on quality improvement for children with epilepsy and their families, and these teams meet three times over the course of the grant, all together, to identify and work on strategies to not only improve care for children and youth with epilepsy, but also to foster the spread and sustainability of their efforts beyond the learning collaboratives as health care reform evolves. Each team is required to have parent and youth participants who are equal and integral partners, and my job is to help ensure that the parent and family voices are heard (I also do a fair amount of talking myself, as you well know!).

Here's where YOU come in.

Do you remember the astounding Spice Island Queen, the medical student who asked those of us with children with special needs for OUR OPINIONS? The post was titled Blog Call, and the response to this wonderful doctor's request for our help in guiding her as she continued her residency in Pediatric Neurology was enormous. If you didn't check back and read the comments that poured in after that post, please do -- they're all quite moving and very powerful. I knew that it was going to have to be my presentation at the collaborative meeting, so I asked my friend Cara's thirteen year old daughter to help me make a Power Point out of it and a subsequent conversation that I had with the Spice Island Queen -- a true collaboration. I think I can honestly say that my presentation, and the Parent Panel that came afterward, made up of several of the terrific parents on the teams present with our wonderful leader, Christy, was the hit of the two day brainstorm. If I knew how to post a Power Point slide show, I would, but I don't, so I won't.

But enough self-congratulation. I also want to highlight parts of the conference that drew my attention, in particular, and ask YOU, once again to help in our spread and sustainability efforts. If you find these interesting (and I know many of you will), please check out the links and send them to others in your circles.

Next week, I'll post the first of a short series of highlights of the conference and the work of the teams.

Carry on, Readers, with your own work! I have some exciting news that I'm posting later today!

What I look like when I'm talking on the phone with an agent of Anthem Blue Cross

while eating a breadstick instead of a cigarette.

I got our premium bill in the mail today, due February 1st. I noticed that the amount due was considerably higher than my last payment (for January) -- exactly 24.89% higher. I remembered reading back in October that Anthem was hiking rates for individual policy holders up to 30%, and I think I did my usual ranting about it, but when we didn't get a notice, I was relieved. For once, I thought, we got a pass.

Evidently not.

I quickly called Anthem and filed a grievance. I told the unfortunate agent that I believed they were out of compliance in not notifying us of the rate increase within a reasonable time. The Unfortunate Agent told me that I had been informed. I took a long drag on my breadstick. I said that I had not been informed and so it goes. I filed an oral grievance on the phone with her, and when I asked her for a written copy of the letter they claimed to have originally sent, she claimed that she would speak to a supervisor about it. I took another long drag on the breadstick. She also said that she would file my grievance and that I would be notified in 30 days that it had been filed and a "decision" would be made 30 days after that. I told her there is no "decision" to be made, and then I asked her for a written copy of the grievance. She told me that she couldn't give me anything but a tracking number. I took yet another drag on the breadstick. I asked her for the number of the California Insurance Commission. She gave it to me, and then asked me if I needed anything else. I told her that I felt sorry for her having to work for such an unethical business, and she asked me, again, if I needed anything else. Bless her heart.  I placed the call immediately to the California Insurance Commission and had a lovely chat with the Fortunate Agent who told me that she was hearing about these rate increases and the lack of notification about them. She told me that she would call me tomorrow morning with an update and when I asked her about Sophie's drug problem, she told me that she could help me with that, too.

I finished my bread stick and called it a day.

Calling on the Posse, Part II

Just in case you've stumbled upon this blog as the result of searching for "big guns," "women with guns," "right to bear arms," or some other such bullhonky, this post is actually another rant of a crazed politically liberal woman with an independent health insurance policy and a child with exceptional healthcare needs who is waiting in fear for the envelope from Anthem Blue Cross that will inform her that her monthly premium will be rising by some outrageous amount in February of 2013. If you were, in fact, hoping for a photo of a woman with a gun or were just shopping around the internets looking for confirmation of your insane need to protect your gun rights now that the country has elected -- for the second time -- a half-black socialist who is intent on taking over the country you love -- well, you've come to the wrong place. Because this blog is actually about the ridiculous fear that many of us who own Anthem Blue Cross insurance policies have about the upcoming proposed rate increases. It's also about the confusing parts of The Affordable Care Act and insurance exchanges and what they might mean to us and when they kick in and what more do we have to do and how do we do it? This post is also about the chat I had over the counter with the nice pharmacist at The Rite-Aid yesterday about whether or not Anthem has added clobazam, the drug that actually helps Sophie, to its formulary so that it will cost $30.00 instead of $400.00 or whether I should just make my plans to fly up to Vancouver in a couple of months to purchase the drug for $63.00 because evidently the pharmaceutical company is jacking up the price here in the United States but not in Canada. The pharmacist confirmed that I will be flying to Vancouver. This post is also meant to provoke my Readers' insurance questions, all of which I'm going to compile into some sort of document and then try to find the answers to them, collectively (not socialist, but collectively).

So, Reader, do you have any questions about your insurance coverage and/or what you might expect as we move forward with the lumbering Affordable Care Act? Feel free to rant a bit about the fact that we don't have universal health care coverage in this country, and if you live in one of the many states that are refusing to enact health care exchanges or implement the ACA, leave a rant here, too. And if you're one of those people who thinks we're all lazy bums for wanting universal healthcare coverage, you can just keep googling "big guns," and "right to bear arms" and click right on off this page.

We have our own posse, and it's growing.

A Dog with Two Bones

That would be me, of late, the first bone being Ann Coulter's use of the word retard and the discussion that cropped up around it, the second being the looming threat of a Romney win and his promised repeal of the Affordable Care Act.

Some dogs chew more effectively on their bones, though, and my friend and fellow writer, Jeneva Stone is one of the big dogs. She re-posted one of her best this morning on Facebook, and I think it's not only required reading, it's imperative reading. I so wish the 24 people on my Facebook page who've checked LIKE on Mitt Romney's page would read Jeneva's essay. I wish many of my relatives would read Jeneva's essay. I hope that those of you indifferent to the Affordable Care Act will read Jeneva's essay and ponder on it a bit.

Here's an excerpt, but please read the entire, brilliant and impassioned plea.

A few years ago, I read most of T.R. Reid's book, The Healing of America, in which he suggests that universal healthcare arose in other countries through some sense of national commonality or other community sensibility: the Brits pulled together after WWII, the Germans rallied round the idea of the common German man (or person, I suppose), and I don't recall what drove the other countries' reasoning. Fairness, I suppose. Cost savings. Desire to improve quality of life. You know, all that reasonable stuff.
Well, not here. In his first chapter, Reid says, "Americans generally recognize now that our nation's health care system has become excessively expensive, ineffective, and unjust." Note that word "unjust." Read the status update above again. "Unjust" because, apparently, that's the way we like it. In his conclusion, Reid notes that "the American reliance on private, for-profit health insurance companies for the bulk of medical coverage is in accord with American values of capitalism and freedom."
As Americans, we value not only capitalism and freedom, we also value merit and "hard work." Because our health insurance system developed as a jobs benefit, we have become accustomed to associating access to health care with the ability to hold a job. People who can't hold jobs don't deserve "benefits" like health care. Because they are lazy, apparently.
Or at least that's the way Americans tend to think when we think at all. Most of the time we're too busy being independent pioneers and starting our own businesses and raising our children according each to her own individual belief that we really don't have time to think. Or when we have time to think we mostly think that Americans who whine about health care are lazy or have government jobs, otherwise known as "sucking on the government teat." Or some less polite spelling. I see that in comment threads all the time, which my husband constantly tells me to stop reading.

As my little sister says, I hear you barking, big dog.

Le Petit Paquet (Drug Mule, Part V)

That's what arrived on my doorstep today, all the way from Vancouver -- a neatly taped, little brown petit four of a package with the words le petit paquet on the top. Inside was a three month supply of Frisium or clobazam or Onfi, the benzodiazepan that costs $2,970 in the United States and $279 in Canada and is currently the best drug for Sophie. It doesn't control her seizures, but it does help them considerably, and after trying nearly eighteen different anti-epileptics with little to no seizure control and hideous side effects, I'd become a prostitute (high class, of course) to pay for it. Whether I make trips up to Vancouver periodically to get the drug or wrestle Anthem Blue Cross into adding the drug to its formulary remains to be seen.

In the meantime, I'm dreaming of Mitt Romney (honestly, I had a dream about him last night that was as boring as he is), feeling bewildered that Sophie and I, according to Mitt, are part of the 47% (or is it 49%?), the lazy moochers, completely dependent on the government.

Keep digging, Mitt, keep digging.

Drug Mule, Part 2: The Apparent Chicken

Evidently, I'm not the only one who is resorting to un-kosher means toward procuring drugs for one's epileptic child. In the comments I received yesterday after posting about my call to a Canadian pharmacy and in many private emails, I got offers from Canadians to pick up the drugs, offers from those who live in the Pacific Northwest to drive up there and pick up the drug, offers from Europeans to get the drug and send it, information from Americans using Mexican internet pharmacies where no prescription is needed, and efforts by my Rite-Aid pharmacy guy whose name is the name of a country to badger Medi-Cal about coverage. While fantasies of fleeing the country to Vancouver -- alone, on a plane!!! -- danced through my head, my inclination toward being an outlaw are mainly just that -- fantasy. I might be an outlaw at heart, but on the outside, I'm a chicken and a nerd. Before I go to Canada, I'm going to keep pecking and pecking at the powers that be in hopes that not only will the drug get picked up by insurance and Medi-Cal for Sophie but for the countless other kids who need it, too.

In the meantime, my father made the brilliant suggestion to order as much of the drug as I can and have it delivered from Canada before Friday when the law goes into effect.

So that's what I did. I called the pharmacy and filled out some forms and called The Neurologist and called the pharmacy back and right now, my fingers are crossed that I'll get an ample supply of The Drug that will cover Sophie until I can really lobby to get it added to the insurance company formulary.

When I went on my walk today, I mused about the frenzy of the past couple of mornings, all the calling and back and forth and anger and frustration. I thought about Big Pharma and its strangulating hold on healthcare and the proper role of medication for sick and diseased children and adults. I thought about how quickly conservatives throw around terms like "the marketplace," "vouchers for medical care," "free enterprise," and I thought above all, that if it's not bullshit it's certainly a bunch of chicken shit. I don't know what the answers are, and I certainly am going to keep on pecking around, but it all feels as ridiculous as that chicken suit one of my boys is wearing in the picture above.

Eyes Open Wide

Or imagine a society committed to providing access to health and wellbeing for everyone, rich and poor, rather than playing childish semantic games about “death panels” and “socialism.” The cost of calls to my insurance company to get permission to see an NHS doctor who didn’t charge me a penny will be six times what I paid for the medicine that cured my infection.

But that, I suppose, is the cost of living in a free country.

--Steve Silberman, investigative reporter for Wired Magazine

Read the rest of the article HERE.

A Morning Anthem

I got an email from Anthem Blue Cross this morning that looked like this:

Your Healthy Solutions Newsletter Has Arrived!


It was the exclamation point at the end, all the cheerfulness inherent in the teardrop and pinprick that got to me, and on a day where I'm hard up to find inspiration for writing (the weather, again? Sophie's seizures, again?, the Transit of Venus, again? the arguments between my sons on whether or not they'd seen the transit because aren't you blinded, Mom, if you look at the sun?), well, caustic words toward Anthem might be just the thing.

I think it would be downright refreshing if Anthem Blue Cross would change their marketing and advertising communication techniques and just be honest. At the very least, I would get a laugh and at the most feel a grudging respect for honesty were that subject line in my email to look like this:

We're Busy, Working Hard to Ensure That We Screw You With Increased Rates!


Or maybe something like this:

Our Intent is Not To Give You As Much Stress As Your Daughter's Seizures, But To Make As Much Money As We Possibly Can!


Or maybe something like this:

If the Supreme Court and Republicans Overturn the Affordable Care Act, We're Ready to Really Fuck You Over, So Be Prepared and Get Healthy!


Or maybe even this:

We Look Forward to Continuing Our Long-Standing Relationship of Coming Between You and Your Doctor On All Matters Related To Your Health!


Reader, if you'd like to join me in this campaign for honesty in advertising and marketing, please feel free to leave a comment. Curse words are welcome. Heck, you can even curse me! And don't forget the exclamation point!

Falling through the cracks

As the Supreme Court draws closer to deciding the fate of the Affordable Care Act, and people either deride the act as Obamacare or draw blanks on its oft-confusing language, those of us in the individual market continue to endure gigantic increases in our premiums even while listening to people complain that they don't want the government to come between me and my doctor. I'm as disappointed as the next person in the healthcare act, insofar as it made deep compromises with the insurance industry and didn't go far enough to ensure healthcare equality. I believe in universal healthcare coverage, however flawed, but I know this will never happen in our country given the current political climate and the level of ignorance we see every day. I have resigned myself to paying for 15% plus increases in Sophie's healthcare coverage every six months to a year (over 150% increase in the last three years). I have researched and done due diligence, deciding to downgrade the boys', The Husband's and my coverage to catastrophic coverage, still expensive and ever-rising as well. I'll continue to grit my teeth in resentment toward those who believe the United States has the best healthcare system in the world and hatred toward those who support the insurance industry in any way.

When I publish this post, I'll call Anthem Blue Cross and begin another fight with them over coverage of Sophie's medication. I won't bore you with the details, but a drug that she's been on for years, that we got from Canada through a pharmacy in New York was just approved for use in the United States by the FDA. I am now able to get the drug at our local pharmacy through insurance. Unfortunately, even with insurance, the drug costs three times as much as it did when I bought it from Canada. That's just messed up and indicative of the bullshit that is the insurance industry, the pharmaceutical companies and American healthcare, in any form.

Here's an excerpt from economist Paul Krugman's column in today's New York Times:


To understand the lies, you first have to understand the truth. How would ObamaRomneycare change American health care? 

For most people the answer is, not at all. In particular, those receiving good health benefits from employers would keep them. The act is aimed, instead, at Americans who fall through the cracks, either going without coverage or relying on the miserably malfunctioning individual, “non-group” insurance market.

The fact is that individual health insurance, as currently constituted, just doesn’t work. If insurers are left free to deny coverage at will — as they are in, say, California — they offer cheap policies to the young and healthy (and try to yank coverage if you get sick) but refuse to cover anyone likely to need expensive care. Yet simply requiring that insurers cover people with pre-existing conditions, as in New York, doesn’t work either: premiums are sky-high because only the sick buy insurance.

The solution — originally proposed, believe it or not, by analysts at the ultra-right-wing Heritage Foundation — is a three-legged stool of regulation and subsidies. As in New York, insurers are required to cover everyone; in return, everyone is required to buy insurance, so that healthy as well as sick people are in the risk pool. Finally, subsidies make those mandated insurance purchases affordable for lower-income families.

Can such a system work? It’s already working! Massachusetts enacted a very similar reform six years ago — yes, while Mitt Romney was governor. Jonathan Gruber of the Massachusetts Institute of Technology, who played a key role in developing both the local and the national reforms (and has published an illustrated guide to reform) has surveyed the results — and finds that Romneycare is working pretty much as advertised. The number of people without insurance has dropped sharply, the quality of care hasn’t suffered, and the program’s cost has been very close to initial projections.

So here's what I think about football.

A few of you asked and a few of you should probably not read any further because here's where I expound upon football and why I've always hated it and why the recent Penn State atrocity gives one a modicum of license to tell it like it is, at least if you're me. Plus, I have the urge to just tell it like it is, for me. The for me is purposeful, so don't get your panties in a bunch (is that the expression) or go thinking I'm all self-righteous and pretentious (although I can be).

It's what I think. And it's going to be a helluva rant.

I am repulsed by football and always have been except for a brief shining moment when my much-beloved high school boyfriend (hey, Clarke) played it, and the shining moment was not the football-playing but the dates afterward with the boy I loved. I suffered through a few Atlanta Falcons games with my family and many University of North Carolina alcohol-fueled end-zone sitting in the boiling autumn sun with more dates games, but The First husband hated the game as much as I did and The Current Husband is Swiss and thinks it's stupider than anything else in America, so there you go. I've had a history of hating football, and it hasn't stopped yet.

My boys periodically pester me about playing it, and I'm not budging. I tell them NO because of my perhaps irrational fear of head injuries. I tell them that I'm just not up for the risk and having not one but two kids with neurological problems. I know that some of you might think this insane. I also tell them that I think football is a stupid spectacle, and that would include the Super Bowl and the insane amounts of money spent and consumed. Honestly? The Super Bowl, to me, is equal in barbarity to the Roman gladiator games of old. The commercials and all the hoopla about them just add to the sickening disgust. (I told you this was a rant).

Here's what else. I think the Penn State horror show is emblematic of American culture in this, the third millenium where every single thing is a commodity, to be bought or sold or valued in economic terms. I've spoken about this ad nauseum as it pertains to people with disabilities. Those of us in those particular trenches, in fact, anyone who has any kind of healthcare issue, must frame our fight in economic terms to soften the blows, to gently influence, to persuade, to get anything. One must make the case that it costs less to help a family to take care of their child or elderly parent at home than to place him in an institution. Those who oppose the death penalty often say it costs more to put someone on death row than to give them life in jail. Money speaks and it speaks incredibly loudly. There was money to be made when American troops were sent to Iraq ten years ago. I'll only mention the commodification of healthcare -- the industry of depression -- treating patients as consumers, etc. etc. etc.

Etc.

Those heinous acts at Penn State happened because one perverse man with a sick, sick mind, was protected by those in power because of the economic repercussions of the scandal. Sure, there's a bit of social scandal thrown in there -- the cult of personality and sports, the protection of one's job, one's reputation -- but I think of football as an industry and the wheels must be kept greased, the benefactors satisfied, the wins bought, the show must go on.

You can protest all you like about the entertainment factor of football, what a great game it is, how these boys have worked hard their whole lives to participate, and that might have been true at some point, but it's not true today -- in either college or pro ball. It's about the money, and the monster that lured numerous boys into the hallowed locker rooms of football and then proceeded to rape them was supported by the sick apparatus of American sports. I'd throw in all college and pro sports, actually, and while I don't despise baseball or basketball, like I do football, I hate the whole industry of sports in general. The spectacle of thousands of people protesting and supporting the coach of that team was another emblem of our culture gone awry. For a minute, I thought that all those guys in charge should have just killed themselves -- sort of like the Japanese do, I think, when they've been shamed.

I think the football program at Penn State should be shut down. That would honor the victims and begin to right the wrong. But that's never going to happen because most of us will continue to plead the case that a few bad apples shouldn't spoil the bunch. An attitude that's as American, now, as apple pie.

Food for Thought

Sigmund Freud and his daughter Anna

I just read two very interesting articles in The New York Review of Books, written by Marcia Angell about the state of psychiatry today. Angell is a Senior Lecturer in Social Medicine at Harvard Medical School and a former Editor in Chief of the New England Journal of Medicine. She is also an outspoken, vehement critic of both the United States' healthcare system and, particularly, the pharmaceutical industry. Here's a quote of hers from a recent PBS interview:

Our health care system is based on the premise that health care is a commodity like VCRs or computers and that it should be distributed according to the ability to pay in the same way that consumer goods are. That's not what health care should be. Health care is a need; it's not a commodity, and it should be distributed according to need. If you're very sick, you should have a lot of it. If you're not sick, you shouldn't have a lot of it. But this should be seen as a personal, individual need, not as a commodity to be distributed like other marketplace commodities. That is a fundamental mistake in the way this country, and only this country, looks at health care. And that market ideology is what has made the health care system so dreadful, so bad at what it does.


The two-part article that I just finished is titled The Epidemic of Mental Illness: Why? and The Illusion of Psychiatry and is partly a review of several new and prominent non-fiction books about the "epidemic" of mental health diagnoses and the concomitant rise in the use of psychopharmacology. It's a shocking article that I can't stop thinking about, and I highly recommend that everyone read it, particularly those that use drugs to combat depression, anxiety and the like, as well as those who debate the merits of medicating children for ADHD and other mental health disorders.  I know this is a controversial subject, but all controversy demands near-constant reflection.


Here are the links:


The Epidemic of Mental Illness:Why?


The Illusions of Psychiatry

Monday Musings

I learned today that David Axelrod, President Obama's closest advisor and longtime political strategist is on his way back to Chicago, where he will be "cranking up" Obama's re-election campaign. I was always interested and excited that Axelrod was so close to the President, namely because he has a daughter with a severe seizure disorder and because his wife, Susan Axelrod, has been instrumental in raising awareness of epilepsy through her formidable non-profit foundation called CURE. I think that the last few years has brought much more publicity to the general cause, including several segments with the Axelrods on 60 Minutes and an entire issue of Newsweek Magazine in 2009. Among the many informative articles in that issue was one about the Axelrods' personal struggle with their daughter Lauren's seizure disorder.

As I read the article in The Los Angeles Times newspaper today about Axelrod's tenure at the White House, I was struck by his answer to the reporter's question regarding healthcare reform:

Reporter: You played a big role in passing "Obamacare."

Axelrod: I came at the healthcare law from a very personal place, because I have a daughter with a chronic disease. I was a young reporter at the Tribune when she started seizing, when she was 7 months old. We were in an HMO. They didn't cover her drugs, which were running $8,000 to $10,000 a year. They were talking about brain surgery. I was making $45,000 a year. We almost went broke...The night that the bill [healthcare] passed, the president was in there with the staff watching the vote, and I slipped out and came in here and closed the door. I was overcome.

That statement obviously resonates with me on many levels -- both intellectually and emotionally. I am confused, overall, about healthcare reform, grateful that it passed, however flawed, but frustrated by its huge limitations and its cut-off reach. At this point, I'm not sure how one goes about making it better without resorting to resignation, disappointment, ranting and raving. The collision of those who believe in the efficacy of government with those who believe it to be intrusive and even evil pales in comparison to the collision between the rights and needs of individuals and those of big business. I lose hope, often, that we will ever be a society, a country that values our children over our "way of life" and the almighty dollar.

Free Enterprise, Anthem Blue Cross-style

Tiger Mom in cage

The saga of getting Vimpat on Anthem's formulary so that we can afford to give the drug to Sophie continues. For me, each day begins with a review of whom I need to call, to whom I need to send a letter and whom I need to email. I have a friend working on speaking with my assemblyman about the matter, someone who is on the insurance commission -- not health insurance, but he's closest in power. I have a colleague at the Epilepsy Foundation of Greater Los Angeles who is in contact with a director over at the national office; evidently, this matter comes up all the time and there are even educational documents for the insurance company to read (at their leisure), bringing them up to speed on issues unique to epilepsy and anti-seizure medication. Anthem is not alone in private insurance company ignorance. Surprise, surprise. In addition to the grievance process with Anthem, I've also filed a complaint with the California Insurance Commission, advice given to me by some higher-upper at the Epilepsy Foundation. It's a lot of make-work, if you ask me, incredibly frustrating and inefficient and all in the name of FREE ENTERPRISE.

Go figure.

The highest irony of all is the letter I got yesterday from Anthem. It seems that "due to increased medical costs," Sophie's insurance premium will be increased another 35% by April 1st. Her insurance premium has been increased 69% in the two years that we've had it. I've mentioned before that we were unable to add Sophie to our family policy because of her pre-existing condition. While this is changing, I should also note that our health insurance premium (for The Husband, myself and our two sons) has increased by over 80% in the three years we've had it.

The salary of the CEO of Anthem Blue Cross was over $10 MILLION last year. Here's a tasty tidbit of free enterprise at its best:

Anthem and Wellpoint had at least two internal initiatives to fund: multi-million dollar lobbying efforts to kill reform, and payment of plump severance packages to executives and highly compensated CEOs, such as Angela Braly, whose $10 million salary is augmented by off-the-books benefits and stock options. It was Braly who announced bluntly at a business meeting that the corporation puts profits over people: "We will not sacrifice profitability for membership. (from www.sickofbluecross.com)


Enough said.


I'm off to make those calls, write those letters, pull myself up (and hopefully others as well) by the proverbial bootstraps and revel in what The Ohioan Tan Man (Speaker of the House Boehner) called as late as last week, "the greatest healthcare system on Earth."

Awesome poster making the viral rounds

Combining weather and politics is tricky,

but that's what I'm going to do. Yesterday, I wrote a short post about the glorious southern California weather -- it was sort of my response to the scores of gorgeous winter snow photos and toasty fires and hearty soups that I've been reading about in many blogs -- but mostly it was because I feel enormously grateful to live here. I lived on the east coast for all but the past twelve years of my life, and I've never felt so certain that this was the best place for me to be, at least in terms of weather -- but that's enough for the weather.

The day before yesterday, I posted one of my usual diatribes about the healthcare system -- I tried to keep it light and poked fun at the ridiculous name that the Republicans in Congress have bestowed on their repeal plan (it's honestly worthy of a country in Swift's Gulliver's Travels!).

The Land of the Repealing the Job-Killing Healthcare Reform Act

Well, today, I have a terrible cold but I'm still coasting on sunshine and was interested to read the following statement by Dr. Bill Frist, former Republican Speaker of the House:

It is not the bill that [Republicans] would have written, he said. It is not the bill that I would have drafted. But it is the law of the land and it is the platform, the fundamental platform, upon which all future efforts to make that system better, for that patient, for that family, will be based.

[The bill] has many strong elements,  Frist added later. And those elements, whatever happens, need to be preserved, need to be cuddled, need to be snuggled, need to be promoted and need to be implemented. But how do you do it? How do you do a lot of what is in this law?

With the possible exception of the use of the words cuddled, and snuggled, I'm encouraged. 

When I rant and rave about The System, especially as it directly affects my own family and, particularly, my daughter, I am entirely cognizant of the fact that WE are not the whole story. I am not the whole story. We have problems and frustrations, but we are supported, well-loved, privileged. I rant and rave at The System because I know tens of thousands, if not millions of people are affected negatively far more than we are affected. I think it's an obligation to point out these problems, perhaps over and over, but more importantly, to believe in and look for solutions, to work toward solutions, to vote for those who you believe are bringing solutions, and, most importantly, to tell your story.


There appears to be no thread to this post -- weather, lemons, lemonheads, doctors and stories.


Make of it what you will.