Rhetorical Questions, Part 465,789 with Photos

1. Why is the process of finding, paying for and getting a wheelchair-accessible vehicle so labyrinthine?

or

        Why is the process for finding, paying for and getting a wheelchair so labyrinthine?

2. Why does the potential advent of Clobazam Oral Soluble Film not excite me?

or

     Why does the potential for an easier delivery of Onfi (that's clobazam) -- likened to a               dissolving postage-stamp sized film -- make me die a little inside.

Jimi Hendrix Acid Tabs
image found on the interwebs

(HINT: It's not because of Jimi Hendrix or LSD)


These are rhetorical questions.


3. Why are we able to launch a rocket into space with a luxury car inside of it?

or

       Why does this make me feel weary?

Elon Musk's recent venture

4. Why do we still have to pierce the skin with a primitive needle to get to a vein yet are able to inject a nuclear substance into that vein which will then carry it to the brain where it will light up metabolic pathways and provide information?

Vintage photo of brain imaging equipment

5.  Why did Sophie's most recent bout of seizures stop when I gave her a double dose of cannabis medicine, yet the Powers That Be maintain it has no medicinal benefit?


These are rhetorical questions.

Tiny little mother minds™ ask none but those.

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?

           

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 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.

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?

A Read-Along Picture Book with Drugs

Today, I went to Rite-Aid to pick up Sophie's prescription for Onfi, also known as Clobazam. I used to get the drug from a pharmacy in New York City that got it from Canada or Germany. I used to pay $150 or so for a six week supply. I paid in cash because Onfi, or Frisium, as it used to be called, was NOT covered by the United States Federal Drug Administration. Sophie's neurologist faxed a prescription for the drug to a pharmacy in New York City that waved some sort of magic wand and flew me the drug after I'd charged it. It was all legal.

Clobazam or Frisium, the way it used to be packaged

Clobazam or Onfi, the way it's now packaged

In January of 2012, the FDA approved the use of Clobazam. Manufactured by Hoechst, the drug Frisium is manufactured now by Lundbeck and was renamed Onfi. It was immediately available at my local Rite-Aid.

Great! I thought. Now Sophie's private insurance plan will cover it.

Sort of:

Sophie has her own medical insurance, administered by Anthem Blue Cross. It's an individual policy, and she has Medi-Cal as a secondary policy. Her premiums have increased over 75% in the four years she's been on this policy. The drug deductible is $250 and co-pays for most medications run about $30.

Onfi is not on Anthem's formulary and therefore is reimbursed at a lower rate than Vimpat -- let's say -- which costs $30 per month as a co-payment. It appears that Onfi costs $990.99 for a one month supply, approximately $890.99 more than it did in 2011 when I bought it from another country. Anthem Blue Cross is picking up $600.75 of that cost. Medi-Cal will not cover any of it. I have a coupon from Lundbeck that gives me $50.00 off for 12 months, leaving me a balance of $340.24. 

Here's the picture, again:

 Do you follow me?

This is actually not me but Ellen Burstyn in the frightening movie about drug addiction Requiem for a Dream.

Good. Let's move on.

Last time this happened to us was with the drug Vimpat, an anti-epileptic that was also recently added to the arsenal of drugs used by those with epilepsy. It took me approximately two months to file a grievance, call the Epilepsy Foundation of Greater Los Angeles (thank you, EFGLA!), wrangle a letter from my swamped neurologist attesting to the medical necessity of the drug, in case we were just fucking around with new drugs and Sophie and then finally my assemblyman who had some sort of pull with the insurance commissioner who then must have made a call to Anthem, because one day when I went in to pick up Sophie's Vimpat, the pharmacist told me that the cost was $30, not $425 like I had been paying up until that moment.

I honestly don't have fat fingers, although they look very fat here.

This is the sort of thing I think about when I hear the other side claim that they don't want the government coming between me and my doctor. 

Let's move on.

 I've been paying/charging $340.24 for the Onfi since January because I made an initial attempt to persuade Anthem to add it to the formulary, was promptly stonewalled and then I just -- well -- gave up. 

Even Dragon Mothers can't do it all, all the time.

Sometimes, it's all too much.

Today, after paying for the Onfi at the Rite-Aid, I felt the old surge of righteousness, and when I drove home, I got on the phone and called Anthem to inquire whether they suggest I go through the whole process again. I was put on hold, listening to Journey for approximately seventeen minutes.

The clerk who finally answered the phone tapped away on his computer for many minutes and confirmed that, no, the drug Onfi is not on the formulary and won't be until Lundbeck the manufacturer lets their patent expire.

My similarities to Ellen's character's look abound.

I thought, why would the drug manufacturer charge me $150 in cash when the drug came from Canada or Europe but now charge $990.99 in the United States, have Anthem eat $600 of that and charge me the rest and then give out $50 coupons to be used for only one year?

I said, Oh.

I do believe this is another time for my favorite vintage photo of all time:

The efficient clerk from Anthem told me to file a grievance, the form for which he would send me via email.

Is there anything else I can do for you today? he said.

Uh, no thank you, I said.

to be continued at some later date