It's NaCaGiMo, Folks! Day 10

I've been veering all over the place -- despair to anxiety to "power to the people" enthusiasm and resolve and then back. In keeping with NaCaGiMo, though, I'm going to tell you that I feel the most panic when I think about what might (and probably will) happen to those of us dependent on disability-related federal subsidies. I'm talking the Affordable Care Act and it's dismantling, what it means to Sophie and her "pre-existing condition." The amount of stress -- both emotional and financial -- that our family and millions of others had before the ACA was PTSD-inducing, and it looks like we're in for another round of it. I'm talking SSI and IHSS, and the various services that many families of children with special healthcare needs and disabilities depend upon for not just their quality of life but also their existence. We had actually made progress the last eight years, and now it looks like it'll be ripped away, systematically. I got a grim reminder of how it happens yesterday as a job I had -- acting as a peer reviewer for a federal grant -- was suspended late in the afternoon. I needed that job, and I'm certain that those who wrote the grant proposals needed that money. It's started already, and if the past is any indication (the 8 years under Bush), anything related to caregiving and the disabled is the first to go on the chopping block. One of the first things that Obama did when he took office was to lift the ban on federal funds for embryonic stem cell research. At the time I was working on a national collaborative team trying to improve the quality of healthcare for children with special healthcare needs (with special effort toward closing the equality gap for the disadvantaged), and the relief was palpable, not just for the medical professionals but also for families who have children with genetic conditions and serious life-threatening illnesses. I'm thinking of the prospect of a Chris Christie in a cabinet position, a man whose draconian stance on medical marijuana could actually kill children and adults who need it. During his short presidential campaign, he vowed to go after those states that had legalized marijuana and turn the clock back. 

I'm going to be honest and admit to my fear, even as I don't despair. It's a matter of principle, I think -- the fact that the Republican party, a majority of white people, INCLUDING WOMEN, put this creep of a man into office and acquiesced to the assholes that will surround and advise him. We need to all WAKE UP and fight back.

Vaginal knitting and other Sunday thoughts in this big world

This morning I wasn't two sips into my coffee when my eyes scanned the headlines of Salon (an online news source that I admit is really no better than a tabloid) and lit on a story about a woman who knits yarn that she has inserted into her vagina. She's an Australian performance artist, and looky-loo gawking aside, it's actually an interesting article about misogyny, feminism, taboos and general outrageousness. What I'm grateful for today, this gorgeous Sunday morning, is my own opened-up mind that is so, not because of any great effort on my part, but due to chance (meaning I could have just as well been born a woman who reads something like this and dismisses it as being bullshit or even disgusting). Reading about the Australian woman's skein of yarn, rolled into a ball and inserted into her netherparts (unlike her, I'm still close-minded enough to shirk from using the "c" word), I was able to even read through the part where she describes what happens when she menstruates, and I didn't even flinch but rather raised an eyebrow figuratively as I can't do that literally, and read on. I even nodded my head at parts of it, and to tell you the truth only balked when the language became too theoretical. I hate theoretical talk more than visualizing a ball of yarn inserted just so into a vagina, tugged little by little on needles and then knitted into a long scarf, to tell you the truth. Years ago, and I might have already discussed this on the old blog, I read a story in Vanity Fair, that other great tabloid, about men who dress as stuffed animals and have a fetish for it, who actually number in the thousands and who call themselves Plushies. I remember reading about this and, again, not being particularly grossed out, felt more amazed than judgmental. I was hard put to thinking anything theoretical at all and could only come up with what could become a mantra for the more simple-minded like myself, and that is:

It's a big world.

So, years after reading that article, I attended a healthcare conference in Orlando, California for my job, at the time, as a parent co-chair of a national collaborative to improve the access and quality of healthcare for children with special needs (what a theory, right?). While lunching in a nearby hotel with my elderly aunt and uncle who had driven to meet me, the three of us noticed a series of men dressed in animal costumes. There were wolves and squirrels and bears. One man walked by our table with a darling raccoon tail coming out of the back of his khaki shorts. My aunt said in her sweet voice that they all looked adorable. My uncle wondered if it were a mascot convention. I think I was digging at an avocado half and bringing a spoonful of chicken salad up to my mouth when it suddenly occurred to me who these men, masquerading as stuffed animals, actually were, and in lieu of spitting my food all over my plate, I probably raised my figurative eyebrow and nodded sweetly at them. Later, on my way out of the hotel, headed back to figuring out why children with special healthcare needs were treated so abominably in our great American healthcare system, I followed a puppy who walked into a huge banquet room of playmates. It was, indeed, the annual Plushie convention, and I could only shake my head in wonder that I had the great good fortune to be at the hotel in that exact moment in time, with my lucky open-mindedness and think it's a big world.

Sipping my coffee, I thought about how so many of we humans believe that things like cursing, particularly if you're a woman, make you somehow less of a woman. I thought about how so many of we humans like to nod our heads in admiration at those women we think of as real ladies -- you know, the kind of women who dress properly, speak properly, act gently and with humility and how thinking of these women, these ladies, make people like myself feel insecure, like we don't measure up, like we're somehow less than because we curse or rail or complain or knit scarves from yarn inserted into our vaginas. I have no theory for this kind of musing on a Sunday morning sipping coffee and skimming tabloids other than it's a big world.

Reader, are you more a theorist or someone who has been chanced with an open mind? Or both?

The Brothers' NYC

Oliver's NYC from the Empire State Building

The Brothers are back, bubbling over with stories of New York City, filled with cousins and old friends, M&Ms and taxi-cab fights. They loved the city and are glad that they live in Los Angeles. They had a wonderful time and missed Sophie and me. They are at least a foot taller, their hair is too long, and this morning, when I was given a raspberry M&M, I agreed that it was delicious and then closed my eyes and breathed in the electric air.

I'm off to Washington, D.C. this afternoon to give another presentation to a group of health care professionals, so I probably won't update the old blog for a day or so. Carry on!

Central Park, NYC

Big, Long F**ing Sigh (and a bit of a rant)

from Anthem Blue Cross, dated 17-Jan-2013:

Dear SOPHIE,


We would like to follow up regarding the grievance referenced below. We appreciate your taking the time to express your concerns to us, since it is through such communication that we are able to continually improve the quality of service that is provided to our customers. 

Please be assured that the issues you have brought to our attention have been reviewed and appropriately addressed.

Anthem Blue Cross (Anthem) received a grievance regarding the non-formulary status of the prescription drug Onfi. The grievance requests that we add the drug to the formulary, since it is a very expensive medication. You are now forced to go to Canada to purchase it at a reasonable price, and your doctor has included a letter of necessity.

I can understand your frustration with the classification of your prescription. Unfortunately, Anthem is unable to alter the terms of the plan for any one member. If you wish to take a medication that is non-formulary, you are certainly permitted to purchase this drug.

...

The Onfi prescription is expensive and there may be only a limited number of members who use this drug. Anthem regrets that at this time it will continue to be considered non-formulary. 

...

[Blah, blah, blah]

Sincerely,

BRENDA H. SKALA
G&A Representative
Grievance and Appeals Department

Well, I guess my next step is to request that the drug be "reviewed for formulary consideration at the next quarterly meeting." I'd love to call up Ms. Skala and give her a piece of my mind, but why bother? She's probably not even a real person.

I've beaten the dead horse on this one, folks, over and over. Who the hell are these people? Why, why, why don't we have universal health coverage? Why does an insurance behemoth constantly come between us and our doctors? Why are the obscene profit margins of insurance companies not more roundly denounced? Why does a drug cost Sophie $63 a month in Canada and $990 in the United States? The same drug? Why? Could there possibly be millions of children in Canada who are on the drug and thereby the price is lowered due to demand? Why is Sophie not entitled to a medication that helps her at a reasonable price? Why do people object to entitlement when it benefits a seventeen year old disabled young woman who has grand mal seizures twice a day every single day of her life? Why?

Drug Mule, Part 5,467,890, Oliver's Music Concert and Elementary School Shootings

So that's Oliver in the middle there, looking all sweet and ready to sing at his school's Winter Holiday Concert. The concert last night was the highlight of my day and a balm to the soul, as I spent most of the morning and some of the afternoon on the telephone with Anthem Blue Cross and then with My Canadian Boyfriend, the pharmacist in Vancouver, and then my Jane Austen Lover Friend in Vancouver who will be performing drug mule duties today and bringing Sophie's medication to Los Angeles this weekend. Who knew there was such excitement to be had in the world of Big Pharm/Big Insurance? If you're really into this stuff, you can go back and read my drug mule posts, here and here and here. Actually, there are about ten posts that refer to drug mules, and I can't vouch for their being interesting or exciting, but yesterday, as I tried to figure out what was going on with my grievance against Anthem, I thought of this photo that I posted years ago on this blog as an example of where I believed the Anthem Blue Cross Review Panel did their diabolical work:

In one of the inane conversations I had with one of the pathetic clerks that work in this office, I asked whether Sophie's drug had been added to the formulary, yet. The Pathetic Clerk typed away and told me that the Drug Review Panel met quarterly to decide what drugs to add to the formulary, and that the decision had already been made for January 2013 and that no, Onfi was not on that list. I asked The Pathetic Clerk  how I might reach the Drug Review Panel or how my doctor might reach the review panel, and she said, I have no idea where they are and how to reach them. We are not given authorization for that sort of information.

I began to weep profusely, then, and curse the heavens.

Just kidding. I felt my heart beat quickly and let off steam by sympathizing with The Pathetic Clerk, telling her that I couldn't imagine working for such a diabolical company. She laughed and when I hung up, I actually did shed some tears before I went into action, called The Neurologist and My Canadian Boyfriend Pharmacist, arranged to purchase the drug again and then called My Friend J who referred me to our mutual friend, The Jane Austen Lover who lives in Vancouver but who is traveling to Los Angeles this Saturday and who will be picking up the medicine from said pharmacy and bringing it to us. I made a copy of Sophie's birth certificate and typed a letter authorizing this drug transaction should customs officials question The Jane Austen Lover and emailed the appropriate documents.

Then I went to Oliver's concert.

This morning, I woke up to read the news of another elementary school shooting, this one hitting very close to home as a good friend and former blogger who is now blogging again, has two children at the school. Thank the good heavens that her kids are now safe at home, albeit traumatized, but I can't help but wonder why in the hell one is able to go online and order hundreds of rounds of ammunition in this country yet have to go to ridiculous lengths to get a 60-day supply of medication for one's epileptic daughter.

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.

Drug Mule

So, remember my post about the drug called Clobazam that is the one drug that sort of kind definitely helps Sophie a bit with her seizures? If you don't, stop here and go there and catch up.

Finished? Good.

This morning I spent a good amount of time working further on this problem. The work involves phone calls, mainly -- to MediCal, to Anthem, to Rite-Aid and, finally, to a pharmacy in Vancouver that another blogger privately emailed me about as being the source for the clobazam that she'd been using. I spoke to a man I'll call Bill who was very kind, very soft-spoken, very Canadian, down to the ehs sprinkled throughout the conversation. He told me that if I were to get the drug from Canada, it would cost me $63 a month for Sophie's dosage.

$63. If you went back to my other post, you'll remember that I am currently paying $390.24 (minus $50 from a coupon that the drug company has issued me to use for 12 months, and I'm on month ten). If I did the math correctly, the price I'd pay to get the drug in Canada is 83% less than here in the USA.

Fantastic, right?

Well, it would be fantastic, except that Bill told me that AS OF FRIDAY, THIS FRIDAY, the FDA will no longer allow the Canadian pharmacy to ship the drug to the United States. Bill didn't know why, and neither do I, but I do have my suspicions (and this isn't the grassy knoll conspiracy-type suspicion).

I began to whimper a tiny bit, so Bill suggested that Vancouver is a beautiful place and really only an hour and a half from Los Angeles. He suggested that I could always hop on a plane and come up and that the pharmacy would deliver the drug to me right at the terminal because the pharmacy is right next to the airport. He told me that it's beautiful in Vancouver, that they have a world-class resort that hosted the Olympics (I knew that), and before long, I was happily chatting about Canada, making a date with him to have a drink when I traveled up to pick up Sophie's anti-epileptic.

Just kidding on the date part, but the rest is the absolute truth.

I'm  not going to use up the white space on this post to say, again, how messed up this country's healthcare situation is. What the hell is going on that I have to do all of this shit to get a drug for my daughter's seizures, a drug that is freely available in other countries at a reasonable price?

When I hung up the phone, I decided to call The Neurologist and see whether we can get a three month supply mailed out before Friday and the new law goes into effect. Then I called my local Epilepsy Foundation to tell them this absurd story and ask them whether they can help. They were interested. Then I fantasized about becoming the Erin Brockovich of Big Pharm. Then I thought about the life of a drug mule and wondered if this would be my breaking bad moment. Then I went on Cheap Flights to see how much airfare is to Vancouver. Now, I'm typing this and listening to the large plumbers in overalls installing a new water heater in my kitchen that is going to cost me $1,000 which would be 2.5 months of clobazam in the United States and 15.9 months of clobazam in Canada. I'm doing this math to be more like Bill Clinton at the DNC last week.

Are you with me? (I think that's what Clinton said, a number of times, during his speech, while crooking his long and elegant finger at me)

Are you with me?

Any thoughts for the breaking bad drug mule?

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.

Sighs, Exhalations and Irony/Disgust/Despair

The Body of Abel, Found by Adam and Eve, William Blake

Republican Presidential contender, Rick Santorum, is calling for an end to public education.

Can I hear a sigh? (and I'd be ever so grateful, if you're a Republican, if you'd tell me, why, why does your party stand for this man?)

Republican Presidential contender, Rick Santorum, is calling for an end to prenatal testing, using the religious/anti-abortion defense. 

Can I hear an exhalation? (see parenthetical statement above)

The state of California is debating whether to help balance the budget on the backs of the ultimate money grubbers: children with special healthcare needs. 

Can I hear some irony, disgust and despair?

Here's a bit of information about the last thing on my list. If you want to express your own irony, disgust and despair, click on the link and sign the petition.

Can I hear another sigh?

The Medical Therapy Program (MTP) is a special program within California Children's Services that provides physical therapy (PT), occupational therapy (OT) and medical therapy conference (MTC) services for children who have handicapping conditions, generally due to neurological or musculoskeletal disorders.

Currently, children in California with one of these qualifying medical conditions qualify for services regardless of their financial status. 
Cerebral Palsy, Spina bifida, Muscular dystrophy, Rheumatoid arthritis, Spinal cord injuries, Arthrogryposis, Osteogenesis imperfecta, Head injuries.  
The California state budget proposes to align income eligibility requirements for Medical Therapy Program with the broader California Children's Services (CCS) Program. Currently, there is no financial test for eligibility. Under the proposed eligibility standards, families with annual income more than $40,000 or with annual CCS related medical expenses less than 20% of their annual income would not be eligible.

This means, a family with two working parents who make minimum wage make too much money and are no longer eligible for medial therapy services.  They would be responsible for finding these services and paying for these services for their children.  This is a huge financial burden for any family, especially families with children who have special needs.  A family with good medical insurance would still have to pay $200-500 per month on therapy.  And, the therapy sessions would have a maximum number of visits, which is usually around half of the time the child needs.  A family without medical coverage would likely not be able to afford services at all.

The Medical Therapy Program provides necessary physical and occupational therapy for children with medical conditions that effect their day to day life. 


Addendum:


I urge you to go here and read these thoughts about disability and government. I could never say it so well.

The Best Giveaway Ever

Last night, I finished reading Because of Katie: A True Story by Karen Gerstenberger, a woman who I am proud to call friend and grateful to call a deep inspiration and source of wisdom, spiritual advice and compassion. Karen's daughter Katie and my daughter Sophie share the exact same birthday (March 8, 1995), so I've always felt a kinship with her. I literally began to read the book when I ripped it out of its wrapping, standing at the dining room table. I continued to read it through the late afternoon, lying in Sophie's room when she came home from school, even holding it as I cooked dinner. After the children were in bed and I'd finished catching up on email and blogs last night, I finished the book in bed, around 11:00 and quickly got up to send an email to Karen, thanking her for sharing her story with the world.

The book is an honest and quite searing account of the journey Karen's family took when their eleven year old daughter, beautiful Katie, was diagnosed with a particularly gruesome and rare form of cancer. The writing is gripping, harrowing at parts, but always informed by Karen's grace and honesty and courage. I believe it to be not just an important personal story, a courageous and honest portrayal of what happens to a tight-knit family as they cope with a grueling treatment plan, but also an important primer for people in the healthcare profession. There is little to no anger in this book -- only the right raging of a mother whose child is dying -- but Karen is generous in pointing out how "the system" worked and how it didn't. As a person who has worked quite extensively in the "quality improvement" area of children with special healthcare needs, I know that this book should be shared with all medical students, doctors and people involved in the care of children who are sick or disabled, and I hope it will be.

From a personal standpoint, although my own experience caring for Sophie for the last seventeen years is quite different than Karen's for Katie, I found renewed strength and inspiration reading Karen's account. I think her descriptions of her family's, particularly her own, growing and intense intimacy with Katie as her treatment progressed and then later when they knew she was going to die, resonated with me the most. I realized that my own family has a startling intimacy with Sophie, and while it might be overwhelming at times, it is, essentially, a gift.

Thank you, Karen, again, for sharing your story with the world, and I hope that everyone has a chance to read this beautiful book.

To begin to make that happen, I am thrilled to offer TWO autographed copies of Because of Katie to two of my readers. Please leave a comment here to enter the giveaway -- perhaps a word of support for Karen or for those who might need support in their own journeys caring for a sick or disabled son or daughter. I will announce the winners on Monday, February 20th.

THE WINNER OF THE GIVEAWAY IS: Taylor's Healing Arts. Please send me your email address ASAP!


I FORGOT! THE SECOND WINNER OF THE GIVEAWAY IS: se (Please send me your email address ASAP!