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