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.

Canadian Respite: 3 1/2 Weeks Out

I'm seeing Canada*** about as well as Sarah Palin did Russia from Alaska. She could see it from her backyard, right?













***For those of you new to the old blog, I went on a week long trip to Canada recently, given to me by a wonderful organization called Caregifted.  I hadn't been away, truly away for nearly twenty years, and damn, it was good. I'm trying to hold on to the soul restoration I experienced.

What are you doing?

Me? Oh.

I'm watching the entire five seasons of Brothers and Sisters, and while it's devolved into pure soap, it's been a great binge. I thank Carrie Link for the addiction.

I just saw the movie Still Mine with James Cromwell and Genevieve Bujold. I loved it.

I'm reading the last chapters of Transatlantic by my Irish love, Colum McCann. I've savored every word although less so than the ones in Let the Great World Spin. 

I'm also going to start Meg Wolitzer's The Interestings and read that along with Flaubert's Madame Bovary.

I ordered but have not yet received this poetry series. There's stuff in there by Lydia Davis, one of my favorite short story writers. She also translated the edition of Madame Bovary that I noted above.

I'm listening to this by Patty Griffin who also sings the song Heavenly Day, featured on our Extreme Parent Video Project that is almost a year old and has nearly 32,000 hits.

I'm also listening to this. We've been lonely. We've been lonely too long.

I like this poem -- it reminds me of my receding respite week in Canada:

Northwest Passage

That faint line in the dark
might be the shore
of some heretofore unknown
small hour.

This fir-scent on the wind
must be the forests
of the unheard of month
between July and August.

James Richardson

So, Reader. What are you doing?

'Bye, Canada!

The new family slideshow (lots of photos of places that you might not care about)

I stood at the top of these stairs to nowhere, aptly marked in case people thought otherwise (the Canadians are polite) and tried not to make metaphor.

These huge pieces of timber float everywhere along the coast. I was told that they are from nearby forestry -- boats filled with felled logs sometimes lose their cargo, and the wood floats and bobs along the shore.

This sign warned passers-by from what looked to be a small fabulous junk-yard.

I have more photos and will post them later. I spent the rest of the afternoon and evening with The Poet. She charming and funny and wise, and I feel as if I've known her forever. We talked about poetry and art and music and family and men. Her drive and commitment to caregivers is truly awe-inspiring, and my gratitude overflows. I really can't believe that this is my third day of respite and that I still have three more to go! I imagine you'll have to steel yourself for another slideshow or two, more rhapsodizing about Victoria, and the possibility of an Elizabeth filled with contentment.

Are you still there? I guess you need a reward.

Come back later and maybe I'll post about me and Javier Bardem on the beach.

A walk to the sea

I turned left and walked to the ocean this afternoon. This is what I saw:

It was so beautiful -- rugged and lonely and really just perfect. I glanced to the right of that driftwood and noticed, quite suddenly, that two people were lying on the beach, and I peered a bit closer, looking much like this:

and realized that they were -- well --

ahem.

Yes I said yes I will, Yes.

My Good Fortune

That's the view from my little tree-top apartment in Victoria, British Columbia and where I arrived last night and was escorted by the wonderful poet Heather McHugh. It would seem that my good fortune knows no bounds, as they say. The weather here is cloudy and I woke last night to the pitter patter of rain, but I slept naked (can I say that, here?) and woke to Canadian birdsong and green treetops. I've made myself coffee and two slices of toast. I've unpacked my suitcase and piled my books on the table beside the bed where I think I'll climb soon. Maybe later I will go for a walk, either to the right and see the town or to the left and see the ocean. Good fortune can come and go, has come and gone and come again.

Oh, Canada

So, I received a hilarious email from a reader today that I won't share here, but suffice it to say that it gave me an enormous laugh, and in lieu of a good-bye post as I leave for Canada** later this afternoon, I'll leave you with this song of Joni Mitchell's. To N who sent me the email, Joni is one part of the Holy Trinity that includes Bob Dylan and Van Morrison:















**I am going on a one-week respite trip, awarded to me through a grant from the organization caregifted.org. I am beyond grateful.

Hen and Chicks

I put Oliver on the bus today that will take him up to camp in the Sierra Nevada mountains. He was very excited -- this is his second year at this particular camp -- and while I am happy (and grateful) to be able to give him this experience and more than happy to have a little breathing room away from his 24/7 intensity, there's a melancholy that accompanies saying good-bye. It doesn't help that it's Sunday, that tomorrow Henry, too, will be going away for ten days and that I will be finally on my way to my respite trip to Canada. The hen feels a bit unmoored at the prospect of pecking along without her chicks. I know that once I'm away, it will feel different, but right now, today, well -- yikes, I'm blue.

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?

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.

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.

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?

What's certain is what's uncertain

It's been my habit of mind, over these years, to understand that every situation in which human beings are involved can be turned on its head.  Everything someone assures me to be true might not be.  Every pillar of belief the world rests on may or may not be about to explode.  Most things don't stay the way they are very long.  Knowing this,  however, has not made me cynical.  Cynical means believing that good isn't possible ; and I know for a fact that good is. I simply take nothing for granted and try to be ready for the change that's sure to come.


Dell Parsons, in Canada by Richard Ford

I'm Astonished

I was reading a fellow blogger's post today and am left speechless. Astonished. Her blog and mission is great -- but this post is particularly meaningful to those of us with children with severe disabilities. I'm not sure how difficult it is to get the services she describes as available, but the array is SENSATIONAL. She is a resident of our northern neighbor, Canada.

OH, CANADA!

Check it out HERE.

And then tell me what you think.