The United States Medical System, Part Three in an Infinite Series told partially through photos

A friend of mine in the epilepsy community contacted me this morning from Canada. She had just learned that the drug Frisium (same drug as Onfi, a benzodiazepine that I've written about millions of times over the years as it's a hideous pharmaceutical with little efficacy for controlling seizures but is intensely difficult, if not impossible, to wean) is being discontinued. She wondered if the same stuff was going down here in the Disunited States.

Here's the announcement that the Epilepsy Toronto organization published:

Medication Alert: Discontinuation of Frisium Tablets in Canada

"Lundbeck has decided to discontinue the manufacturing of Frisium (clobazam) Tablets in Canada. They expect the current inventory to be depleted by the end of 2018.
This decision was not triggered by a safety issue, but rather is based on the numerous alternatives available in Canada. The decision was not triggered by a safety issue, but rather is based on the numerous alternatives available in Canada. Lundbeck is communicating this change well in advance in order to give healthcare professionals, patients and families as much advance notice as possible so that Frisium patients have ample time to successfully shift to an acceptable alternative."

My friend told me that she tried to get to the bottom of this issue by speaking with the company and then the pharmacist. Lundbeck told her that they "don't normally talk to the general public" and that she should speak to her pharmacist. The pharmacist knew nothing and said, "You should just call your doctor and they will prescribe something else." That evoked a little -- ok, a lot -- of sarcasm, because anyone who knows anything about Onfi/Frisium/clobazam knows that it's nearly impossible to wean it once you've been on it for more than a few weeks, AND there actually are no substitutes except for, maybe, Klonopin, which has its own set of horrors. I felt some small comfort in knowing that even in Canada, big pharmaceutical companies and pharmacies are as obtuse and insensitive as they are here. Canadians just don't have to pay for the bullshit, I guess.

See the ticket price of a 24-day supply of the drug Onfi that I picked up for Sophie just the other day. It's written very, very small up there in the right-hand corner. Sophie's been taking this drug in all of its iterations (Frisium, Onfi, tablet Onfi and liquid Onfi, non-FDA approved and FDA-approved) for nearly ten years. The cost for us has ranged from $550 a month to $70 a month over the course of years, and I've drug-muled it from Canada (you can find those posts if you go to the search bar and put in drug mule), gotten it from pharmacies in Germany and England, been reimbursed by non-profit foundations that are underwritten by Lundbeck (what a racket) and just plain coughed it up (the money, that is). Today, I can only get a 24-day supply because of the tight regulation of opiods and benzos, and since we use the liquid form (more expensive) and the pharmacy can't open a bottle to give a partial amount, we are stuck paying the co-pay every 24 days instead of once a month. Less drug, more money paid by us. Less drug given, more money made by insurance company, pharmacy and pharmaceutical company, I guess.

We have, above all, always been a slave to this drug and the cockamamie system because of its potency and powerful addictive characteristics. The drug has absolutely never really controlled Sophie's seizures. She was given her first benzodiazepine Nitrazepam at THREE MONTHS OF AGE on what was termed compassionate protocol because it was not FDA-approved. She was also given Ativan, Tranxene and Klonopin, none of which helped her and all of which were a bitch to withdraw. My tiny little mother mind™ wants to sit here and dwell on the fact that all of these drugs were and continue to be prescribed and given to little babies without any real knowledge of their long-term effects, but what's the sense of dwelling on The Great Unknown?

Exhibit A

It enrages me in the way that those of us who do this thing are enraged. We function quite well at a slow simmer.

Anywho.*

After my friend contacted me, I put on my Pharmaceutical Sleuthing Hat (see above).

I read about the Canadian shortage here. I called Lundbeck here in the Disunited States and spoke to a very chipper man who claimed to not know about the issues in Canada. He assured me that the drug Onfi had no manufacturing problems but that there was some rumbling about contracts with a certain distributor, Amerisource Bergen. There are, evidently, problems in the wholesale distribution area -- particularly with some pharmacies. Lundbeck is working on the problem but does not foresee any stoppage in manufacture of the drug. I wondered why the same drug, manufactured by the same company under two different names, was being discontinued in one country but not the other. The Chipper Pharmaceutical Dude had no answer for that. There was a point where he said that he'd speak with a supervisor about what was going on in Canada, and when I told him that I already had that information, he kept talking and talking over me, saying the same thing and for a split second that might have stretched on into eternity, I wondered if he was a real person or some kind of robot endowed with pharmaceutical intelligence. The chippery at that point gave me the creeps, so I refrained from asking him why my current supply costs $1584.65. I refrained from asking him what sort of collusion Lundbeck and CVS and Blue Shield have that they can't give me a third bottle to cover Sophie for more than 30 days so that I don't have to make a co-pay twice a month instead of once.

So it goes, as Vonnegut said so pithily.

I wonder what it would be like if Vonnegut were the Chipper Pharmaceutical Dude. My mind goes hither and thither, thither and hither. That would be Joyce.













* I use this word facetiously as I despise it. If you're a New Reader, know that. It belies the intensity of the situation described.

Smells Like Bullshit, Episode 45,678,982

Unless you've been living under a rock (and I've said it before, I understand), you've seen the various articles coming out at least once a day regarding radical price increases of popular pharmaceuticals. Most recently, there's the Epi-Pen story with its handsomely paid CEO, daughter of a Democratic congressman, and today's selection was about pharmaceuticals that treat inflammatory conditions, including arthritis. You can read about that right here and then come back to hear what the tiny little mother™ mind thinks about it all.





(this blank bit of screen has subliminal messaging because I'm a bit of a conspiracy theorist and tremendously biased)













Are you back? I was going to make this a Facebook post but then got carried away enough to realize that my blog was a perfect place to rant a bit, especially because I so rarely do that anymore. That was a joke. I'm thinking aloud here, typing so fast my fingers are a blur (I scored very very high on finger dexterity when I took a comprehensive test back in the last millennium a skill that comes in handy for a number of things that I won't elaborate upon here), but it will help me to get it out of my system so that I can go back to my day with a modicum of sanity. You know, finish the housework, navigate the systems of care for Sophie, coax Henry along the college application process and remain level-headed while shopping at Target for shorts with Oliver.

Anyhoo.


This is mainly what I want to say about the continued clusterf**k that is Big Fantastic Pharma and Big Grandiose Private Health Insuranceland or The Big Big Medical Industrial Government Complex (I sound a little like Drumpf now, don't I?) as far as it relates to Medical Marijuana World. When this rant's finished, I'm going to fix it ALL. It's going to be GREAT.

Along with the EpiPen and arthritis drugs, epilepsy drugs have long fluctuated wildly in price -- a single dose of ACTH, the steroid routinely given to those with infantile spasms cost $154 when we gave it to Sophie back in the late 1990s. I believe it's upward of $16, 000 now, and that's not because of inflation. That's because of the mumbo-jumbo Big Pharma puts out -- you know -- the high cost of research, rising costs, blah, blah, blah, etc. Diastat, or rectal valium, an emergency medication that is now in generic form, has cost me as much as $1200 A DOSE and as little as $7.50. Long-time readers of a moon worn as if it had been a shell might remember my Drug Mule series when I chronicled what happened to the price of clobazam and how I gamed the system. I'll refresh you:

1. Called Frisium, clobazam was not FDA-approved when we first started using it. I paid out of pocket for it for many years, purchasing from a London pharmacy through a NYC pharmacy. Cost: $150 for a month supply. So, manageable.

2. Approved by the FDA and renamed Onfi, it was not covered under my Insurance Company's formulary and was priced at $1800 for a one month supply, 1/2 of which I was subject to, so that's $900.

3.  I was no longer able to get Frisium but located a pharmacy in Canada that sold clobazam (remember Onfi, Frisium and clobazam are all the same drug and close cousins to Klonopin, one of the most heavily prescribed drugs in the US of Opiate Addicts) for $60. It became illegal to ship the drug across the Border, so two friends of mine in the Movie Industry, on location, picked it up and ferried it back to me. This was legal -- well, sort of -- but not sustainable, and in lieu of flying up to Vancouver every three months (I contemplated doing this and making a little vacay out of it), I turned next to:

4. A non-profit organization on the east coast that helps people with certain conditions get drugs for free or at a reduced price. I should add here that the Magnanimous Manufacturer of Onfi offered to give me a coupon for 12 months that would have taken $50 off the $900 co-pay (similar to the Epi-Pen CEO's magnanimity in lieu of reducing her $5 trillion salary). The non-profit PAID FOR THE ENTIRE CO-PAY which was like manna from heaven. I just had to swallow the small amount of vomit in the back of my throat when I found out that the non-profit was largely underwritten by the Magnanimous Manufacturer of Onfi and GOT A HUGE TAX WRITE-OFF for their charity to folks like us.

Are you following this because those four points were really just illustrative and an aside. Here's what I want to say today, in reference to that New York Times article linked above:


Guess what else is a potent anti-inflammatory?

I'll give you a hint: The DEA recently confirmed its status as a Schedule 1 drug, along with heroin and cocaine, meaning it has no medicinal value and can't be studied except under the most draconian of regulations.

Are you following me?

I'm no conspiracy theorist, but I suspect Big Pharma is getting their ducks (or dicks) in a row as they scramble to research and develop their own cannabis concoctions. The fact that we can grow it ourselves and make our own medicine means no money for The Big Guns, so we must all be subject to the scare tactics of Big Government and Big Private Entities. Free enterprise, baby. Capitalism, baby. Let the Market Do Its Thing, baby.

Us? THC, baby.







P.S.
While we're smelling the bullshit, if you have arthritis and live in a state where you can get some, try cannabis. It's a potent anti-inflammatory. I am not a doctor, though, and have only a tiny little mother mind™so please consult yours and don't sue me.

Punch Drunk, Insane and Bitter

to Erika

Ellen Burstyn in Requiem for a Dream
I imagine that I look like this, often

One of the superlative benefits of having a child with a disability, particularly a seizure disorder, is that I've found and become friends with some of the funniest people on the planet. I don't think of myself as funny, but I do acknowledge a superlative sense of humor, particularly a dark one. I got two pieces of mail yesterday -- one in my inbox and the other by snail. The online mail was a cheery notice from the manufacturer of Onfi, or clobazam, the drug that warranted my 4,325,792 posts titled Drug Mule over the last couple of years. In a nutshell, it cost me just under $500 for a one-month supply with private insurance and $61 for a one month supply when I traveled to Canada or had a friend bring it to me. We currently get a one-month supply from a local CVS for $0 thanks to a grant we received from a beautiful non-profit organization that helps those having difficulty paying for expensive drugs. The fact that the beautiful non-profit receives large contributions from the manufacturer of Onfi who then, I imagine writes those donations off,  is beside the point. I'm just saying, as they say.

Anyhoo.

I got this notice from the manufacturer of Onfi that the company is now making scored tablets and a suspension of the drug. Here's a copy of the photo at the top of the email:

That's followed by a photo of the new scored tablet, but I can't copy it for some reason. Then comes some information about the drug itself: 

Use

ONFI (clobazam) CIV is a prescription medicine used along with other medicines to treat seizures associated with Lennox-Gastaut syndrome in people 2 years of age or older.

Important Safety Information

ONFI can make you sleepy or dizzy and can slow your thinking and make you clumsy which may get better over time. Do not drive, operate heavy machinery, or do other dangerous activities until you know how ONFI affects you. Do not drink alcohol or take other drugs that may make you sleepy or dizzy while taking ONFI without first talking to your healthcare provider. ONFI may make your sleepiness or dizziness much worse. ONFI can cause withdrawal symptoms. Do not suddenly stop taking ONFI without first talking to a healthcare provider. Stopping ONFI suddenly can cause seizures that will not stop (status epilepticus), hearing or seeing things that are not there (hallucinations), shaking, nervousness, and stomach and muscle cramps. ONFI can be abused and cause dependence. Physical dependence is not the same as drug addiction. Talk to your healthcare provider about the differences. ONFI is a federally controlled substance (CIV) because it can be abused or lead to dependence. Serious skin reactions have been seen when ONFI is taken with other medicines and may require stopping its use. A serious skin reaction can happen at any time during your treatment with ONFI. Call your healthcare provider immediately if you have skin blisters, peeling rash, sores in the mouth, hives or any other allergic reaction. Like other antiepileptic drugs, ONFI may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call your healthcare provider right away if you have any symptoms, especially sudden changes in mood, behaviors, thoughts, or feelings, and especially if they are new, worse, or worry you. Tell your healthcare provider about all of your medical conditions including liver or kidney problems, lung problems (respiratory disease), depression, mood problems, or suicidal thoughts or behavior. If you are pregnant or plan to become pregnant, ONFI may harm your unborn baby. You and your healthcare provider will have to decide if you should take ONFI while you are pregnant. ONFI can pass into breast milk. You and your healthcare provider should decide if you should take ONFI or breast feed. You should not do both. Tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements, as taking ONFI with certain other medicines can cause side effects or affect how well they work. ONFI may make your birth control medicine less effective. Talk to your healthcare provider about the best method to use. The most common side effects seen in ONFI patients include: sleepiness; drooling; constipation; cough; pain with urination; fever; acting aggressive, being angry or violent; difficulty sleeping; slurred speech; tiredness; and problems with breathing.

For more information, please see the accompanying full Prescribing Information and Medication Guide.

When I opened the email, I was in a mood -- one of those moods -- and it just struck me as funny -- an insane, bitter kind of funny -- that the mother and her child looked so damn happy about these new scored tablets. I immediately thought of my friend Erika whose daughter has recently been put on Onfi (and who also had some trouble getting it covered), so I forwarded it to her immediately not because it was useful information that might be of benefit to her, but because I knew she'd immediately think it was funny -- an insane, bitter kind of funny -- just like me. I wrote 

 Good news! I got this in my email inbox this morning, and it really brightened my day, especially the photo of the child playing with his or her mom! There's nothing like a scored Onfi tablet to make family life easier!

Erika replied:

Thank you, Onfi! And you have to be a Debbie Downer to care about those side-effects when you can so easily break these tablets in half! 

God, I love my friends. (And I know some of you reading think I'm terribly uncharitable and that I should be grateful for something here, but now's not the time and I'd rather stick an ice-pick through my eyeballs than be grateful to a pharmaceutical company).

The snail mail was a tidy envelope sent by the Department of Social Services and concerns our recent application for Social Security Benefits for Sophie. As you might remember, this process went a whole lot smoother than I had imagined, and I guess I sort of thought that the whole thing was complete (Sophie is getting a check each month), but evidently, there is still some necessary information that the government needs in its determination. Here is what the letter says:

Your claim for disability benefits under the Social Security Act has been reviewed and more information is needed about your condition. Therefore, it is necessary that you be examined, at NO COST TO YOU, by:

(they list the address of a medical clinic here)

An appointment has been scheduled for you on 09/09/2013 at 11:00 AM for a NEUROLOGICAL exam. Our agency will pay only for the authorized examination or test and for certain related travel expenses.

First of all, I did not put the word NEUROLOGICAL in bold type. They did. I found that hysterical because I'm weird like that.

NEUROLOGICAL!!!

I am of course wondering why we have to go through this NEUROLOGICAL exam since we already appeared in person and the woman who did our intake confided in me that Sophie would certainly qualify even if I hadn't brought her in person because of the extent of her medical records. I am of course wondering whether some people might go so far as to fake a disability as serious as Sophie's in order to get that million dollars a month from the government (and then roll the wheelchair down the ramp and jump into their Cadillac before roaring off). I even wondered whether this NEUROLOGICAL exam is being ordered so that someone somewhere has a job to do.

Sigh.

Anywho.

I guess on the ninth of September, I'll be keeping Sophie home from school to get her NEUROLOGICAL exam so that the government doctors can confirm that she is, indeed, disabled.

Reader, what are you laughing insanely and bitterly at today?

           

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

Good Lord, ya'll!

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

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




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

Joan of Arc, Drug Mules, and Guns

Joan of Arc at Prayer, John Everett Millais, 1865

Some say that Joan of Arc, or Saint Joan, received her visions directly from God. Others say that Joan of Arc might have had temporal lobe epilepsy and with it came the intense and revelatory hallucinations that directed and guided her to save her people. I don't know, but I imagine that in every way, Joan of Arc was guided by Love, a godly Love -- something divine and certainly other-directed. I was thinking about Joan of Arc and her visions and her epilepsy while I was taking a shower this morning. I was also thinking about the little card I got in the mail the other day along with the letter to Anthem Blue Cross from The Neurologist. The card was a discount card from the manufacturer of clobazam, the drug that The Friend Who Loves Jane Austen recently ferried across the great Canadian-American border for me. The letter is part of a larger grievance against Anthem to add the drug to Sophie's covered formulary so that it's affordable. The little card gives the user a $50 discount monthly up to a year for the drug, and I wondered whether the drug manufacturer thought itself kindly or cooperative in making this gesture. I thought how the nearly $1,000/month price it charges in the United States compared to the $63/month price it charges in Canada suggested that only the proverbial 1% could afford the drug. The rest of us are supposed to be grateful for the discount. When I stepped out of the shower, the aroma of the gingerbread cake I'd put into the oven wafted through the steam in the bathroom, and as I toweled off, I thought of Joan and her visions and her epilepsy and her zeal. I thought of the families, again, in Newtown, one of whom is dear to me, and I thought of the people who have rushed, with zeal and fear, to buy up guns much like the ones used to slaughter little children, before they are, perhaps, out of reach.

Guns, I thought, for the free and the brave.

Quelle rackette, Joan of Arc might have said, as she climbed on her horse and drew her sword, her eyes directed outward, her brain's marvelous mapping obedient to the Divine.

The letter p, Flemish paintings and rain with some f'-bombs

The Love Potion - 15th c. Belgium

It's raining in Los Angeles this morning, a soft, gray rain that doesn't stifle the crows squawking outside my back door but relieves the lot of us from the pressures of sunshine. I ripped a page off my tiny desk calendar, a copy of the painting that I posted above. Isn't it weird and fantastic? The man at the door, the curlicues, her shoes -- what's happening here? I have a few new readers on my blog or old readers who've chosen to comment. Welcome! One of them pointed out that she received the same email in her inbox about the drug Perampanel, the one I mused about the other day, wondering why its other name was Fycoma. Well, it turns out that I missed a letter p and that the drug is actually called Fycompa. So much for our wondering who the hell named an epilepsy drug suggesting the deadening of the brain. Here's the thing, though. I looked up compa on the Internets and saw this definition in Urban Dictionary:

1. compa: Spanish slang for compadre. Ei compa, get you ass over here.

2. compa: Pocho slang for compadre; pal, chum, dawg. Yo compa, bust out with the yesca... 

Fy in the Urban Dictionary stands for Fuck Yeah! and even Fuck You! 

Fycompa, then, could possibly suggest that after luring you to take it -- get you ass over here! -- there's the very obvious possibility that you will be seizure free -- fuck yeah! -- or fucked over -- fuck you!

New Reader, I stand corrected but ever valiant.

I should have been a drug namer, don't you think?

Drug mule, mewling and Jesus

So, it seems like it's that time again. Given that Sophie is having up to three big tonic-clonic seizures a day, again, and also moans and hums an inordinate amount of time, her drug regimen is suspect. Is it the Vimpat? Is it the Clobazam? I have no idea, although I'm certain that the weaning of one or both will be brutal. I'm trying to have the energy to figure it out and take action but feel slow in the doing, slower than I ever have before. I've made the calls, done the rounds and am thinking of doing the whole alternative thing, again -- the homeopath, the Chinese doctor, the osteopath.

Know any shamans?

These are the drugs that Sophie has been on during the last eighteen years:

ACTH

Prednisone

Mysoline

Nitrazepam

Phenobarbitol

Depakote

Depakene

Klonopin

Clobazam

Zonegran

Lamictal

Vigabatrin

Topamax

Diastat

IvIg (technically not a drug, but a treatment)

Ketogenic Diet (not a drug but a treatment)

Felbatol

Keppra

Banzel

Vimpat

Clobazam

The efficacy of nearly all of them has been questionable; the last two were desperate measures as I'd said that I'd only try a new drug again if Jesus himself offered it. And we all know that Jesus doesn't offer drugs to children who seize.

Reader, if you're as familiar with anti-epileptics as I am, would you wean the Vimpat or the Clobazam first?

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 3: Mission Diverted

Sophie's medication will be leaving lovely Vancouver and arriving in Los Angeles sometime next week. We're good to go for three months, during which I'll be exploring ways to get the medication at a reasonable cost here in the good, old U S of A. I appreciate all your suggestions and offers to help. It's not out of the question that I'll be traveling to Vancouver one of these days, so I'll take a rain check on visiting those of you who live up or near that way! Now I'm going to mainline some heroin and relax.

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.