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.

Drug Wars

I posted the above photo, innocuous enough, and told my Instagram followers that if such things turned them on, they should come over here and read this blog post or rant or whatever you might call the twenty-first year of wrangling with drug companies, pharmacies and insurance companies. I spent a bit of time today on the horse, trying to get Sophie's prescription of Vimpat refilled. I write a lot about the benzos -- Onfi, in particular -- but you might not realize that Sophie is also on Vimpat and has been since it was approved for use by the Almighty FDA in the fall of 2008. Yessiree Bob, as they say, and anywho. We slapped that drug on, along with the Onfi, numbers twenty one and twenty-two of drugs both approved and not-approved by The Almighty FDA and then spent the next eight years fighting for coverage by private insurance companies and Medi-Cal despite the grim fact that it doesn't really work. 

What does it mean when a drug given for seizure disorders doesn't really work?

It means the seizures don't stop.

Why, then, did you keep Sophie on that particular drug combination?

Because taking away drugs is a hideous process, and we had no other options. Oh, and because I used to listen to The Neurologist and do what he or she said with the exception of adding a third drug which I had earlier declared I would only do if Jesus Himself offered it to me. The Vimpat didn't appear to affect Sophie negatively, as far as we could tell (which isn't very far as she can't talk or express whether she's having any of the following:

Common side effects of Vimpat:

• Blurred Vision
• Dizzy
• Double Vision
• Feel Like Throwing Up
• Head Pain
• Throwing Up
• Uncoordinated

Infrequent side effects of Vimpat:

• Abnormal Manner of Walking
• Diarrhea
• Drowsiness
• Feeling Weak
• Involuntary Eye Movement
• Involuntary Quivering
• Itching
• Loss of Memory
• Low Energy
• Sensation of Spinning or Whirling
• Signs and Symptoms at Injection Site

• Rare side effects of Vimpat:

  • Atrial Fibrillation
  • Atrial Flutter
  • Atrioventricular Heart Block
  • Decreased Neutrophils a Type of White Blood Cell
  • Deficiency of Granulocytes a Type of White Blood Cell
  • Feeling Faint
  • Giant Hives*
  • Having Thoughts of Suicide
  • Increased Eosinophils in the Blood
  • Inflammation of the Middle Tissue Heart Muscle
  • Kidney Inflammation
  • Liver Inflammation caused by Body's Own Immune Response
  • Mental Disorder with Loss of Normal Personality & Reality
  • Multiple Organ Failure
  • Slow Heartbeat
  • Stevens-Johnson Syndrome
  • Suicidal
  • Toxic Epidermal Necrolysis
  • Abnormal Liver Function Tests
  • Aggressive Behavior
  • Anemia
  • Chronic Trouble Sleeping
  • Confused
  • Depression
  • Difficulty Speaking
  • Disturbance of Attention
  • Dry Mouth
  • Easily Angered or Annoyed
  • Feeling Restless
  • Fever
  • Hallucination
  • Heart Throbbing or Pounding
  • Hives**
  • Incomplete or Infrequent Bowel Movements
  • Indigestion
  • Mood Changes
  • Muscle Spasm
  • Numbness
  • Numbness and Tingling
  • Prolonged P-R Interval observed on EKG
  • Rash
  • Ringing in the Ear

Sophie has two different Vimpat prescriptions because she gets a smaller amount in the morning, so we try to keep the number of pills she has to swallow to a minimum AND avoid cutting pills into quarters or halves or other infinitesimal amounts. Today, when I went to pick up the refills of BOTH prescriptions, I was told by The Earnest Pharmacist (sigh, they're always so earnest) that Vimpat is a controlled substance, and they couldn't release it to me until Monday. I told The Earnest Pharmacist (bless his corporate heart) that I knew that because my daughter had been taking the drug for seven years (even though it doesn't fucking work) and then The Earnest Pharmacist said he would check to see whether if he over-rode that stipulation the insurance company would cover it, and I, of the tiny, little mother mind™ suggested that he give me three pills to tide me over to Monday and The Earnest Pharmacist said, Oh, no, I can't possibly do that and right before I morphed into Terms of Endearment Epilepsy Drug-Style Shirley MacLaine and banged on the counter, The Other Earnest Pharmacist looked up from her computer or little desk where she was counting out some other poor soul's drug and said, Oh, I can take care of that! Then I forked over my $120 co-payment that Medi-Cal is supposed to pick up but has mysteriously neglected to do so without the six thousandth prior approval.

Then I grabbed a bottle of cheap vodka from the liquor aisle and a bag of Cheetos and ran from the store to add to my stash of Vimpat that I am hoarding for thrills at home in the brown basket right next to the bottles of Onfi and the Lone Ranger cookie jar.







* The reason for this post has just occurred to me. Sophie has been getting hives off and on for a number of weeks. I have no idea why and am now wondering if it's due to the Vimpat? I had thought a drug rash unlikely when I first saw them, because drug rashes usually show up right after you begin taking the drug, and it has been over seven years, but --- well --- sigh. 
** See above.

How We Do It: Part LIV

No one really wants to rage, except when there's nothing about which to do so. My own simmers below the surface of things, beautifully contained. Savory. Hot springs. Remember my story of the neurologist who had called children's services to intercede when several people I know went against her wishes and put their children on cannabis? She also was involved in an alleged "medical kidnap case." She apparently rages, when there's nothing about which to do so. She wrote this piece, posted in the New York Times. I missed it because I was in the fairy tale woods of Hedgebrook, but I read it last night, felt the heat pick up.  I picked up Sophie's refill of Onfi today, paid $60 for six boxes of liquid benzo that will, hopefully, be one of the last batches before we've fully weaned her. We've been weaning the drug for the last eighteen months, taking a tiny bit away every six to eight weeks with a predictable array of side effects that hit after three days, ten days, three weeks and then off and on until we hit a steady spot and take away a tiny bit more. We're just over 50% weaned, and we've discovered that adding a few drops of THC each day helps the withdrawal symptoms. I think about the players when I swipe my debit card to pay for the Onfi -- the researcher that figured it out, the pharmaceutical company that made it, the government that approved its safety for use, the neurologist who ordered it, the pharmacist that scraped it into the bottle, the insurance company that determined whether it should be "covered," the parents that pay for it (pay whatever amount it's worth at the moment -- $1,000, $500, $90, $63, $60, free) then fill the syringe with it, the young woman who opens her mouth and takes it, and the brain that bathes in it. It all ends there, in the bloody, wrecked bath. I am reminded, again, of the difference between resignation and acceptance, where they fall on the continuum of rage. I am a master of muted rage, the good girl gone wild only in her head.

An Access Public Service Announcement

Did you notice while watching the Dateline special Growing Hope on Sunday night that nearly every single commercial was for a pharmaceutical or for a pharmaceutical for your dog? Are you at all as bothered by the irony as I? I doubt anyone who wants to be relieved of their incontinence problems, their aching joints or their failure to maintain an erection has to beg their legislator to get relief.


I'm drawing up a few days' worth of Sophie's Charlotte's Web cannabis oil in the above photo. I told Oliver to hold that camera a little higher so you can't see any chins. You can see my Italian peasant woman arms, though, that soft and terribly strong part of my body that I defy anyone to put down as they've served me well as a mother for over twenty years. As you can see, I'm at the end of the bottle which means I can pick up the telephone or go online and order some more from Realm of Caring.

I have access to this lifesaving medication.

Thousands of families don't, though, and are either medical refugees or waiting to get access, at the mercy of politicians. I won't talk about doctors in this post, though, at least the misguided ones. Some people not only live in states without access to cannabis oils but also have doctors who stymie their desire to try it.

Sigh.

You can help. Go to The Coalition for Access Now. 

Three Pictures

When the sun goes down at the end of the day, it slants just so through the bathroom windows. I always think, it's the bathroom's favorite time of day.

Sunset was weird tonight, windy and orange-hued.The air was thicker than usual, and it might have sprinkled a bit here and there. It's never enough.

One drug, one month's worth. Thirty blue tablets, chock-full of chemicals that do terrible things but don't stop seizures. Someone's making money. You do the math.

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.

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.

Real vs. Bourgeois, Round One

Project Cyclone: Giant computers solve industry's toughest problems and open new, lucrative field for women interested in mathematics
Popular Mechanics, 1955

I'm going to introduce a new series here at a moon, worn as if it had been a shell, where I'll set my mind to parsing out some of the biggest problems in the world. I'm going to do a contrast/compare kind of thing and present a REAL PROBLEM and a BOURGEOIS PROBLEM.


ROUND ONE:


Bourgeois Problem:

This morning, I decided to take a shower and wash my hair for the first time since I got a few highlights put into it last week. I remembered that when your hair has been colored or highlighted, it is, in effect, fragile and perhaps even damaged, so I had bought a new bottle of shampoo to address this. The label specifically cited its efficacy in cleaning and deep-conditioning dry, damaged hair. I stood in the bathroom reading the label and wondered when, exactly, does one's hair turn from being sleek, shiny and healthy to rough, dry and damaged? Is this something I should have already addressed? Why did this happen? I hate that it happened.

Real Problem:

I got an email alert today from the Epilepsy Therapy Project, a wonderful site chock-full of everything you can imagine concerning epilepsy. Today's alert was titled Lamotrigine and Aseptic Meningitis and described the recent findings by the FDA of a strong correlation between the use of Lamictal (brand name of lamotrigine) and aseptic meningitis. Now, Sophie is no longer on Lamictal, although she took that drug for nearly seven years (aged three or so until aged ten!) and didn't develop aseptic meningitis that I know of. But Sophie is on some very new antiepileptic drugs that, I've explained here over and over, I never get used to administering to her. I describe it variously as like giving your child poison, year after year after year with no real expectation that it's giving anything but a modicum of seizure control. The Problem lies in this sentence, at the end of the article: 

This case highlights the importance that we need to continue systemic monitoring of antiepileptic drugs even after they are approved in order to fully understand the adverse effects related to any given medication.

You can read more about the Real Problem here. Is this something I should have already addressed? Why did this happen? I hate that it happened.

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