Monday, September 10, 2012

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?

31 comments:

  1. Hi Elizabeth, Aetna is covering Clobazam for Isabella. Is Anthem not covering it?

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    1. Um -- no. Anthem is only covering 1/2 the price of the drug which leaves me with a $400 co-pay. That is why I am on this odyssey to begin with.

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  2. Reading that, literally felt like a fist around my heart squeezing the air right out of me.

    You are unbelievable in your tenacity. And I just want to scream at someone for you because this is sheer insanity - all too American greed!

    What is the math for the airline ticket?

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    1. I found a couple of flights under $200, so it's looking good to fly to Vancouver and still save money! I was thinking that maybe I could have an affair with the pharmacist or something to really make it worthwhile! :)

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  3. Know anyone in Mexico? Maybe the Vancouver pharmacy could mail it to a friend in Mexico who could then ship it to you. Even with all the postage, it's still a damn sight cheaper that way.

    And I hope the Epilepsy Foundation takes this and RUNS WITH IT!

    And I think you should call Bill Clinton and let him know what is going on.

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    1. I wish I could fly to Vancouver with Bill Clinton. :)

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  4. Have you thought about calling the health reporter at the LA Times? This is the kind of story they'd love.

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    1. Yes. I'm going to do it tomorrow when I've recovered somewhat from all the phone calling today!

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  5. You don't think the pharmaceutical companies might be pressuring congress do you? Like "we can't verify that this drug is what it says it is from Canada"? Congress should be saying to the drug company "if you can sell it for that price in Canada, why are your charging U.S. citizens so much"?
    I'm sure it has nothing to do with how much drug companies hand out to politicians.

    Best,
    Bonnie

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  6. The damn pharmaceutical companies piss me off to no end. Medication should not put anyone in the poor house and yet, it does. Wrong, wrong, wrong.

    If you ever do make it to Vancouver let me know as I am just a ferry ride away!

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  7. Vancouver is beautiful especially this time of year and I know deep down you have the heart of an outlaw. My friend Donna is paying $30,000 a shot for treatment for her rare melanoma.

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  8. I think it's time for you to visit our beautiful, friendly neighbor to the north.
    I think it is WAY PAST time for Americans to quit taking it from Big Pharma. Up the a....
    Why are we letting this happen? I really don't understand it.

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  9. NO comment, just aghast with my mouth hanging open. Make this your line in the sand and go girl!

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  10. Would they let a fiend pick it up for you... Or do you have to be there in person? Let me know. Vancouver isn't too far from me.

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    1. Thank you Kimmie! I'll keep you posted -- although I'm not sure I want you to be breaking bad as well.

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  11. Surely you have a reader or two in Vancouver? I believe a private shipment from a hostess to her departed guest is kosher - "You left this here during your stay. We had such a lovely time. Can't wait to see you again!".

    The LA Times and Brockovich-ing big Pharma is tempting though and I have no doubt you could smash a few obstacles. But first, why is Aetna paying for anonymous's drugs and not yours?

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    1. Sophie has Anthem Blue Cross, not Aetna. Anthem is covering the drug, but it's not on the "formulary," so they'll only cover a certain percentage. The drug actually costs $990 -- Anthem picks up part of that, and I cover the rest.

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  12. We used to get Sabril from Canada too...until it made "unavailable" since we could legally get it here now. It's insanely different in price, and thank god we can get it covered. But, if we lose that precious insurance, it will cost us around $8,800 a month (as explained on Anthem EOB). We have the last receipt from our delivery from Canada, one month supply cost us $400. Later that month we got the EOB from Anthem explaining the same amount cost them $8,800. Absolute insanity.

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    1. Oh, yes, lovely Sabril. Back in 1995 (!) Sophie was a little baby and we got it from London. A chapter in my book that I've been writing for years is devoted to those little foil packets...

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    2. We used the little packets, until he got too big to split the doses up, and now we get tablets. That medication was one of the main reasons we tried to move to England. We heard that it was going to be covered in the States, but we had to have eye exams to prove he didn't have damage to his eyes because of it. . . problem was, and is, his metabolic disease causes severe eye damage.

      England didn't work out, mostly because in order to have that fantastic NHS healthcare, you have to either be a resident or a visitor...we were neither. We were visa holding, job interviewing, stuck in the middlers. Without a confirmed job, my husband couldn't get a tax number to get us an NHS number, and with Max's seizures out of control again, we had to come home.

      Now, we get his eyes checked every 3 months, with a big note attached every time to Lundbeck that he was born this way, baby! And we hope every time that his magic medicine shows up the next month.

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  13. Good Lord, this is ridiculous. Well, if it's a bunch cheaper to fly into Seattle, you have a place to stay here, and then you and I can drive on up. It's only a [gorgeous] two hour drive to Vancouver.

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  14. My idea is similar to others - have a friend in/near Vancouver pick it up and ship it to you. Even if you pay someone, it will be cheaper. The situation is simply fucked.

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  15. What an absurd, frustrating situation. I wish I had words of advice, but I don't. (Unless, as others have suggested, someone can pick up the drugs and mail them to you.)

    You would think that having a drug become commercially available in your country would be a GOOD thing, not a bad one! (I guess the key word is "commercially.")

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  16. Ah, yes, the good ol' American way of "commercializing" "health care". Take the trip or take one of the offers to pick up/ship, whatever it takes to go around the Greedy Bastids. x0, N2

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  17. Oh...I love the irony here. In Canada, we have the "health protection branch" which is basically a watch dog for pharma, taking all half decent herbal supplements off the shelves. Kava kava, carnitine, horsetail even got hit. I need carnitine for Sophie, as Valproic acid depletes Carnitine in the brain. Apparently, I can get a prescription for it for $400 a month...or have it booted over from the states for ten bucks for a bottle of 90. Do the same with Kava. It's nice to have good neighbours. ;)

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  18. You know why, of course. My friend who is a top guy in drug research, went to a top program, knew him then, know him now, makes enough for an upper middle class living but for the years of working for peanuts and studying and doing this top level research, is not living that large. In fact, if he made much less, he wouldn't be doing this, much as he loves the work and he is very good at it. What pays him is private research now, not government, and if the drugs that he comes up with were sold at Canadian prices here, they would not cover the work it took to come up with them and be profitable enough to do the research for them. We do have that problem world wide that there are a number of conditions "not worth researching and developing" with the payback method. But once the stuff is released, the copy cats can make it for pennies on the dollar which does not cover what it cost for all the failed research as well as direct costs in making it happen. Happens with all sorts of things other than the meds. That it has to be this way for life sustaining essential meds is a danged shame.

    The whole way insurance works is a terrible scam. I bought into eye needs insurance this year, and those doctors and providers who are linked with it, just jacked up their prices so I'm paying just about the same as not having it if I use them. I have to go find an outside provider at discount, and do the paper work to make out on it and I don't even know if I will this year. I certainly won't if I don't get every single family member on the dependent coverage to use the benefit before year end, and then cancel the program for next year. Doing it every other year or two years in a row and then skip two is the only way I can get a benefit out of some of this insurance since the medical providers and savvy and right there first in line to get the benefits. It's horrible that there is no pass given for health and medical needs and it has become a profitable industry instead of a right for all humans.

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  19. Infuriating. Absolutely infuriating.
    You are one resourceful mama, but oh how I wish you didn't need to be doing this sort of thing.

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  20. Just pure rage and frustration and the urge to rip my hair out on your behalf. My heart is pounding.

    I have fantasized about being Erin Brokovich myself, but haven't done it yet.

    This American Life did a story on a similar situation once. A woman traveling back and forth from Canada for drugs that would save her father's life. I'll go find it for you in case you didn't hear it.

    My favorite show of all time shoots in Vancouver and my lover Jensen Ackles lives there part of the year so maybe we should move there together?

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  21. Here we go. It's act two of this episode:

    http://www.thisamericanlife.org/radio-archives/episode/262/miracle-cures

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  22. Im WITH you girlfriend!

    and im sorry you have to go through all this nonsense...

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