Tuesday, August 21, 2012

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


  1. we do what we can until we can do what else we can.

    i wish i could wave a wand.

  2. Makes my head and heart hurt for you.

  3. Makes me so ashamed of this country that this can happen and we LET it.

    Makes me so sad that you have to jump through such twisted hoops to help Sophie.

  4. i would say this is unbelievable, but ... it's totally believable. it's just a big game for the pharma companies, making their moves, always just a step ahead of the (full-of-loopholes) regulations, and chuckling all the way to the off-shore bank.
    if sympathy, empathy, screaming-mimi anger is any help at all...i'm here for you.

  5. I also know the truth of what you posted as my son's medications cost 900+ and for a year were mailed from "China", with his low co-pay..then all of a sudden the insurance company said NO more of these drugs and demanded his Dr change script..We fought and fought and LOST...then the Dr informed us we could submit to the Drug company itself for free medicine (as son qualified)...for 1 year he will receive free medicine from the Company..One year at a time..unless the Republicans get voted in then....that thought infuriates me so much I will stop my comment on that note...
    We're in this mess together

  6. You crack me up. Not the ridiculous, absurdity, of the situation but your post. and you in it. Totally cracked me up.

    Did the same with Zoey's Vigabatrin back in the day. Most likely we used the same company you did in NY. It was that or head over the border to Mexico.

    Which, on the night Zoey was diagnosed with Infantile Spasms, and the doctor from CHLA illegally handed me the scrip, along with the directions photocopied, of the pharmacy in Mexico, in that moment of darkness, Mark had to literally stop me from hopping in my car and driving there solo.

    I swear to God, in that moment, I would have done anything.

  7. We saw the same with Vigabatrin too. We got it from Canada for almost 7 years. When it became "available" in the States, it was immediately illegal for us to get it from the trusted pharmacy who had provided it for all those years.

    Now we have to go to eye appointments every 60 days to prove that his eyes aren't being damaged by the medicine. And only then will we get the Vigabatrin. The biggest problem there is that Max's eyes are absolutely damaged, but not from the medicine...from the 200 plus seizures a day he was having before that medicine STOPPED THE SEIZURES!

    We spent about $200 a month on the Vigabatrin in Canada. We get the invoice from Accredo who bills our insurance/medicaid and see the same bottle, with the same label is $1800 a month now that it's "available" in the States.

    Did I mention I hate seizures recently?

    It's all so ridiculous. It's maddening. But, we do what we have to for our kids.

  8. You pay how much for Frisium? My mouth is open. Here in Australia, it is one of those meds NOT on the PBS and still, we only pay $25 for it. I could maybe start dealing it??
    Seizures suck.
    Hate them.


    Please, please let the government intervene. When they're done legislating how I use my vagina, I mean. Cuz I know they're awfully busy with that right now...

  10. Posts like this make it clear how diseased our medical system has become. I don't see how anyone who wants to repeal "Obamacare" could read this post and not understand what's wrong with private-payer health care, where companies squeeze people who NEED MEDICINE just as hard as they can in order to make money. It is a filthy, filthy system.

    Go, dragon mom!

  11. I'm with Anna, I complain about Frisium being "off label" for epilepsy and costing us $25 instead of $5. Fark, that sucks.

  12. Have you booked your flight to Australia yet?

  13. Oh, that really sucks.

    I've found with some selective Googling that Clobazam seems to be covered by some Med-Cal plans - "Restricted to FDA approved indications" which Sophie definitely qualifies for...

    but I'm not sure if each county's Medi-Cal has a different formulary?


    Also, another blogger down in LA who might be helpful: http://jenellesjourney.blogspot.com/2012/07/all-go-for-onfi.html

    And, last, does your Medi-Cal have a Pharmacy Services you can call to request a modification to the formulary? (Or your neuro can do on Sophie's behalf?) Our Medi-Cal provider says this on their website "CenCal Health would like to emphasize to all providers that with very few exceptions all FDA approved drugs potentially are a covered benefit, and those drugs not listed in the formulary are covered with an approved Medical Request Form (MRF)."

    I hope something in here is helpful!

  14. Even though your post is darkly hilarious in its construction, the reality of this makes me want to scream or cry, or both.

  15. I live in Canada and my daughter is on clobazam and yes it's cheap ($50 for 3 months) but right now there is a shortage and I'm not sure we'll be able to fill her prescription when we run out. Our pharmacy says they're supposed to get more in early feb and I certainly hope they have it since our supply runs out in mid-feb. this is the second shortage in 2 year We used to live in Japan where drugs were cheap and always available and doctors actually answered your questions promptly. I miss it.



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