Imagine That

Elizabeth Taylor as Maggie the Cat in "Cat on a Hot Tin Roof"

I know ya'll think of me as the Ellen Burstyn character in Requiem for a Dream, but what if I told you to imagine me as Elizabeth Taylor in Maggie the Cat's white slip, languorously standing in the doorway of my bedroom, come hither --

Do you know that the Powers That Be called this morning and cancelled the NEUROLOGICAL appointment? They acknowledged that they had gotten sufficient information from The Neurologist (Sophie's regular one) that I had directed them to call when in my former Ellen Burstyn mode and had decided that yes, indeed, Sophie was sufficiently disabled to warrant continued SSI.

Imagine that, my friend Jenni texted me earlier when I told her.

Yes, imagine that!

Thank the animal gods, thank the universe, thank my lucky stars, the good Lord, Jesus Christ, Allah, Muhammad, the Buddha, and Ellen Burstyn.

Thank Elizabeth Taylor for giving me an out.

Punch Drunk, Insane and Bitter, Part 2

I've posted the above photo of Ellen Burstyn as the diet pill-addicted mother in the creepy movie Requiem for a Dream a number of times because I absolutely feel like I look exactly like that (well, maybe exactly with dark hair) during certain trying times in my life.

Like this morning.

When you read this, I will be at a clinic somewhere in the hinterlands of Los Angeles, with Sophie. Sophie will be receiving a NEUROLOGICAL exam to ascertain whether she is, indeed, disabled and whether she qualifies and can continue receiving Supplemental Security Income. I wrote about this on an earlier post that you can review here, if you like. Scroll down through the other jibber-jabber to read specifically about the NEUROLOGICAL exam.

In my mind, I can put on my best Ellen Burstyn in Requiem for a Dream nightmare face and laugh maniacally about how the jig is up! Sophie is going to receive a NEUROLOGICAL exam, and our long eighteen plus years of pretending that those pesky seizures are more than fig newtons of our imagination is going to be revealed! It was a good run while it lasted! A crazy, kooky run! Hopefully, Sophie won't completely blow the show and start reciting Wallace Stevens poetry or do one of her amazing back flips!

In reality, I'll be taking notes to share with ya'll later today. I bet you can't wait.

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?

           

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