Wednesday, March 10, 2010

A Story

I didn't mention it earlier, but I took Sophie last week to another appointment with The New Neurologist. This neurologist sees adults and her specialty is women and epilepsy. We landed up spending at least an hour and a half with this doctor which could either be a reflection of the fact that she is awesome or that adult neurologists have more time to spend with their patients than pediatric neurologists. In any case, she affirmed/confirmed my feelings that Sophie's seizures, right now, are often the manifestation of stress caused by hormones -- the terrible ups and downs that all young women face as their bodies navigate puberty. I've been talking about this for what seems like years and I haven't had much response until now (and that's another post entirely -- the unique differences of women and disease and the often terrifying lack of studies regarding those differences). At one point, our pediatrician was willing to put Sophie on birth control, and I filled a prescription but put it into the medicine cabinet, chicken to put another chemical substance into her body (and we were actually trying the new drug Banzel at that time, anyway).

Did you know that the treatment of seizures with drugs is often no better than a crap shoot?

We're definitely losers in that area.

Anyway, back to the New Neurologist. She prescribed a certain type of birth control and wrote the prescription, of course, as a hormonal treatment for seizures. She indicated that Sophie would need a continuous supply. We wrapped our long conversation up and I left feeling heartened, feeling that new eyes and a new brain with a fresh look might help Sophie.

I dropped the prescription off at Rite-Aid in my neighborhood, a drugstore that I must say I have to be vigilant about because they make mistakes all the time. They don't make life-threatening ones, at least not yet, but on more than one occasion they've messed up our prescription and I've had to call them on it. But I digress. Two days later, I went back to pick up the birth control.

That was yesterday, Sophie's birthday, and who doesn't want to fill and pick up a prescription for birth control on one's daughter's fifteenth birthday? 

In lieu of belaboring my encounter with the pharmacist, though, I think I'll just make this a play, a two-act play of absurd proportions.


The Lady (me): Hi. I'm here to pick up my daughter's prescription. The Lady gives the name of her daughter and the woman behind the counter turns around and begins riffling through the plastic bags hanging on a closet-like rack. She finds the prescription, looks at it and motions to me to walk down the counter to a semi-private cubicle.

The Pharmacist (in a whisper-like word): Your insurance doesn't cover birth control.

The Lady (her heart begins to pound because she suffers from insurance PTSD): Um. As you can see on the prescription this isn't being filled as birth control but as a treatment for my daughter's seizures.

The Pharmacist: I'm sorry but you'll have to speak with your insurance company. If you want to take this as is it will cost you $75.

The Lady: What? $75? For a three-week supply? The neurologist said that she needs a three-month continuous supply. Despite her status of being an insurance snafu/fuck-up veteran, tears are pricking her eyes. She can't believe that this is what she's doing on her daughter's fifteenth birthday. 


The Lady walks out of the pharmacy shaking, not because it's such a big deal, actually, but because she's been dealing with this sort of crap for way too long and she's feeling really, really sorry for herself. She had intended to go run pleasurable errands but instead drove home to call said insurance company.

Act II

The Lady sits at her kitchen table with the phone standing next to her on speaker. She is on hold and the tinny sounds of "Mandy" come out of the speaker.

Oh, Mandy, you came and you gave without taking.
I need you toda....

Voice: Hello. How can I help you today.

The Lady: I need you to tell me why the prescription the doctor ordered for my daughter is not being covered. The next couple of minutes are taken up by the sound of a computer, clicking. The Lady answers all the questions asked with a rising sense of hysteria. She is especially stuck on the fact that it's her daughter's birthday and when she is asked by The Voice what the patient's birthdate is, The Voice doesn't wish her happy birthday.


Voice: Well, it says here in your policy that birth control is not covered.

The Lady: The doctor specifically prescribed this as a hormone treatment for seizures. That's why the prescription is written for a continuous supply.

Voice: I understand your frustration but the policy doesn't cover birth control. You'll have to get your doctor to contact us with a letter of medical necessity. May I place you on hold?

The sounds of "Mandy" continue to trickle out, but the Lady is sitting in her suburban kitchen and something appears to have snapped within her. She is staring at the small Buddha statue that sits in front of the Once in a Blue Moon picture frame on the kitchen windowsill. She is considering standing on top of the kitchen island and smashing the telephone into bits. She thinks, too, of organizing some sort of posse. She has thought about it before but the Chorus is drowning her out.


If you've stayed with me through this long and boring two-act absurdist, post-modern comedic tragedy, you might consider joining my posse. Leave me a comment. And if this blog is being monitored through Homeland Security, no worries (the irony, the irony). Honestly.


  1. I'll join the posse! You are not the first parent asking for birth control pills to be provided for something other than birth control. Hopefully this letter of "medical necessity" will be required only once?

    It's great to hear that you have found a neurologist who specializes in women with epilepsy! It should be really helpful.

    I have often heard that children(with AS, my only area on knowledge) who may be seizure free for years, have seizures again during puberty - both girls and boys.

    I hope that as Sophie's hormones start to "settle" so to speak it will be positive for her seizure activity.

  2. You have to have a sense of humor with anything chronic. Believe me I know. I am glad you liked this doc. Hope the meds help. xxooT

  3. Not only will I join the posse but I am willing to get on the phone and tell them that I am about to contact every newspaper in the free world and let them know about the fact that they cannot distinguish between the multiple purposes of some medications and based on their ignorance they refuse to cover said medications. In several languages so it goes all over the web.

    Bastards! and if Home Land bull feathers is monitoring this, just stop for a minute and think like human beings, of the rational race that is: if there is really home land security where can we find it? We are not secured with the banks, we are not secured with the insurance companies, we are not secured with the pharmacists, would someone kindly tell me where can our children be secure?

  4. I'm sorry..I'm just there room for a crying Canadian in your posse?

  5. What's the problem here? It's supposed to be all about the insurance companies. And, please, the co. employees don't have time for compassion. They are busy people. They have to get on to the next frustrated patient or parent of patient. Isn't it enough that they provide you with upbeat music while you're on hold and wanting to smash your phone into something?

    Will I be on your posse? You bet!

  6. It never ends, does it?
    Send me a badge. I'll join your posse.

  7. Oh, Elizabeth, the cosmos can be cruel (and ironic). My birthday wish for you and your daughter is a life where the wonder, beauty and joy of the world dominates and seizures, bureaucratic idiocy and stupidly indifferent professionals (not the new neuro, of course) are things of the past.

  8. signing up for your posse right now Elizabeth. This is insane. So sorry you had to deal with this on Sophie's birthday, ridiculous and heartwrenching. Argh!
    Yet, you told it so well. Darn it.
    Thinking of you.

  9. I don't know how to comment your post... It's an illustration of the world we live in, beautiful (science really help us) but also absurd (and law and rules offer a lot of illustrations of it). Hope you'll have a solution. Humour is the first...

  10. I'm saddled up and ready to go. xoxo

  11. Get me a horse!

    The ludicrous nature of the entire episode (particularly with Mandy playing in the background) had me rolling on the floor.

    I don't know what I would have done going through that :(

    Keep us posted.

  12. Who's your insurance company? There's a woman here who told me that hers is covered - is there a way to change it at all?

    I'm sorry this was so frustrating. I wish I could just get it for you through mine. :(

  13. I'm so sorry you have to deal with this crap! Sophie is so lucky to have you to take on "the man" for her.

  14. flipping ridiculous .... on all counts .... especially that birth control is not a covered Rx - even if it were for birth control. Thank God you aren't needing it for your 15 yr old for that reason - but what if you were? as many Mom's probably do. Argh .... I'll be in your posse ....

  15. Count me in! Though I am not goingt be helpful with insurance, I am a parent-advocate now. Rock on, Elizabeth - we've got your back!
    This makes me miss Renee, BTW - she would have had something strong and spirited, yet comforting to say. So I will sign off with her "XOXOXOXO."

  16. My husband's insurance doesn't cover birth control for Katie either. I can only imagine that the people who made this decision, to not cover birth control, are misogynists.

    Puberty was and still is a difficult time for Katie. It started when she was eleven, that's when she ended up on the anti-psychotics. There needs to be research done on special needs and how puberty affects these kids.

    Sending a hug.

  17. I'm in! And I'm with Allegra -- I'll call that damn insurance company too. I've certainly done that enough times, what is one more? It would be a relief to give another kid's birthday. I'm so sick of rattling off our own info.

    So happy about the new neurologist though. I know just what you mean about the hope and lightness you feel when a doctor really listens and gets what you are saying.

  18. This was just the post I needed to read today.

    This morning I was looking at my salary papers and silently complaining inside myself because I pay so much tax. My greedy me was thinking that no matter how much my salary raises the taxes raises equally and at the end of the day I’m left with more or less the same amount of money.

    I need to thank you. Your post made me “re-realize” how lucky I am to live in a country where we all pay lots of tax and have almost free medical care. A country where I can buy birth control pills for approximately $20 (for three months), where medical care for children under 18 years is free, where dental care for children under 18 years is free, and were pregnant women have free doctor appointments, follow up and treatment visit during their pregnancy …and so forth.

    Thank you!

  19. I'm in! I'm always up for a rumble with the insurers.

  20. Rite-Aid. Sounds like an awful pharmacy. I've filled my share of off-label prescriptions, and if there is ever any trouble, WALGREENS gets on the phone with my insurance company and my doctor and FIXES it. It sometimes takes a couple of days, but at least I don't have to deal with the aggravation. Can you go there?

    And, with regard to the posse, giddy-up!

  21. This is crazy! I cannot comprehend how these companies can be so unfeeling. Count me in!

  22. I love the ultimate irony that, although the pharmaceutical companies are not only aware that their medications can be used for multiple different uses and, indeed, market them that way to the actual physicians, they are not covered for multiple uses by insurance companies. As if the insurance company either: a) suspects that the physician and the patient are colluding to deceive them, or, b) doesn't believe the prescribing physician is competent enough to make that decision.

    I think that if the patient goes to the trouble to see a doctor they trust and the doctor writes the damn prescription, the insurance company ought to STFU and pay, already!

    As you can see, I'm joining your posse. Good luck!

  23. I, for one,would like to read your post about the unique challenges of women and disease and the appalling lack of studies regarding those differences. Boys with CF live, on the average, 6 years longer than girls, and the girls experience an average drop in lung function yearly beginning at puberty. I put my daughter on birth control.

    Darn, my husband just walked by and said - Weren't you going to spend the day painting the bathroom?




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