Tuesday, July 13, 2010

The Last Beating and Some Gratitude

Dear Insurance Commissioner of California,

Today, my daughter Sophie finally received the medicine her neurologist ordered to treat her electrical status epilepticus in slow wave sleep, or ESES. This rare seizure syndrome is particularly devastating for my daughter because it causes global problems: eating difficulties and accompanying wasting, cessation of walking and ataxia, constant drooling and, of course, near constant seizures, particularly while sleeping. The first time Sophie was diagnosed with ESES, more than five years ago, was probably the  most devastating period for our entire family, outside of her initial diagnosis at three months. However, she was treated with intravenous immunoglobulin, or IVIG, and the ESES resolved. Needless to say, when we learned that Sophie was having a recurrence of the disorder, we were upset but relieved to know that the treatment for it was something that she had responded to, successfully, before and that it should help her again. Six weeks ago, Sophie's neurologist diagnosed the recurrence of ESES and ordered IVIG for treatment.

You probably know what comes next. Six weeks of waiting while the insurance company, Anthem Blue Cross, investigated our doctor's prescription and the medical necessity of the treatment ordered. You also might know or expect that, yes, we have an individual insurance plan with Anthem and are therefore not protected by a larger company group policy. You also might expect that our fifteen year old, extremely disabled daughter has to have her own insurance plan because our family plan (that covers my husband, myself and our two young sons) will not accept her with a preexisting condition of epilepsy. You also might expect that the premiums for both her plan and our plan have increased by almost 50% in the last year and a half. You might NOT expect that we rarely use the benefits because most of the doctors we visit are considered alternative and thus generally don't accept insurance for payment, meaning, we foot the bill. We have also been blessed with good health and work hard to maintain it. We pay premiums for health insurance, although we can barely afford them,  because we are responsible citizens and because we know from our experiences with our daughter that the unexpected happens.

I am sure that you are nodding your head right now because you've heard it before.

I'll sum it up: my daughter needs another infusion in about six to eight weeks before we will see any results. If Anthem Blue Cross had approved the treatment prescribed by her doctor when the disorder was diagnosed, we would be nearing the time for the SECOND treatment and that much closer to relief -- relief from constant seizures wracking our daughter's wasted body and wreaking havoc on our family.

As a parent advocate, both paid and volunteer, as a board member of The Epilepsy Foundation of Greater Los Angeles and, most importantly, as a mother of a child with a severe seizure disorder, I implore you to regulate these gross infractions of Anthem Blue Cross. I know that I am not speaking only for my child. You know that I am speaking a tired story -- of inefficiency, ignorance, mediocrity, amorality, and systematic corporate greed run amok at the expense of children.

I hope you will help to change this.

Elizabeth Aquino

Now for the Gratitude!!!
Sophie had her first infusion of immunoglobulin and it went well. We were at the infusion center with a team of incredibly efficient and kind nurses for about seven hours. Despite being exhausted (you know how much I hate hospitals and it was difficult to see Sophie feeling so terrible), I read your comments on my blog and felt your good wishes. I am grateful.


  1. I've been waiting for this.
    love love love

    and the letter is perfect. go Elizabeth. go justice.

  2. Never thought I'd be so happy to see a needle in a kid's arm.

    Kick their asses

    The Universe is abundant


  3. I'm with Michelle- kick their asses. And please, let this work and let Sophie be helped and let your family have some peace in their hearts. Love you, dear.

  4. This is such good news, Elizabeth and your letter is a powerful statement. I hope it gets read, recognised and taken in by those who might be in a position to do something about these things.

    I admire your determination and tenacity.

  5. Well, it's about TIME. Glad it went well.

  6. You are so good. And persistent. So good for your child and for the rest of us too.

  7. I gazed in that Italian ceramic bowl today (the one with the beautiful young woman's picture on it, the one who looks so much like Sophie) and thought of Sophie, of you, the boys and your husband, your hard/beautiful/rich tapestry of a life, and felt so glad you are all in the world and that I get to experience you a bit through my own kaleidoscope. I put my hopes for Sophie in the special wish box along with everyone else's.

  8. I am so happy to see the picture of Sophie getting her treatment! Thank goodness. I only hope it isn't a battle to get the second round.

    Your letter is perfect, btw.

    I am in OC ... does your epilepsy group meet up monthly? Where do you meet?

  9. Your letter is the epitome of graceful lioness.

    I am SO happy she is getting the treatment underway Elizabeth.

    much XOXOXO and more XOXO

  10. Fingers crossed and a prayer said that the IVIG helps.

  11. Bless you, dear Elizabeth and Sophie. Thank heavens. xoxo

  12. Love the letter. And the good news. You're amazing, you know that?

  13. i felt you there.
    honestly...i did.
    i am grateful beyond measure.
    sleep good tonight, you have fought long and hard for your mermaid.

    i love your letter.

    if the insurance madness continues to implode any chance of being on SCHEDULE for the next treatment, we, your people, are going to prepay.


  14. I am breathing a sigh of relief.
    Your letter is wonderful.
    Blessings on all of you.

  15. "Well-written" is an understatement. Your letter is exceptional. And I am so relieved that the infusion finally happened, and all went well. Sending love.

  16. So happy that Sophie now has her chance at relief.

    So sad that you would have to write such a letter in the U.S.A.


  17. Hurrah! I hope Sophie feels better soon.

  18. your letter is so well written .... I hope your insurance commissioner is a just and compassionate person.

    Thinking of you, Elizabeth, knowing there is light at the end of this tunnel .....

  19. I am soooo glad it went well.

  20. Insurance companies think they are banks where money is deposited and never withdrawn. They have dementia regarding the fact that they are being paid for a service.

    Your letter is G
    reat. You amaze me with your will to go on fighting, but then, you are a mother and she is your only daughter.

    So glad she is getting the treatment she needs at last.
    x0x0 N2

  21. WHOOOOOOO HOOOOOOO!!! i cant imagine the relief you feel right now. im so sorry its been such a fight when you need all your energy for taking care of sophie. it sucked but its made right now. it can only go forward from here.

    thanks be to the grace of the universe...at long last:)

  22. Thank heavens for the infusion! May the healing begin.

    That's a fabulous letter. Have you thought of sending it to Mrs. Schwarzenegger, as well, since she is a mother of four? Just a thought...

  23. Thank you for sharing the good news! And the letter as well....I hope it's heeded.

  24. I'm so glad to see Sophie finally getting her first infusion.

    Glad, too, to see some riot-act-reading. You rock.

  25. I'm so so so happy that Sophie is finally receiving the treatment! Now I'm just hoping and praying that it will work and the status epilepticus will go away and Sophie and you and your family will get a break. And of course, your letter is perfect.

  26. I am feeling gratitude for you and Sophie too. Also, on behalf of all children with epilepsy (and pre-existing conditions) that they have an advocate like you. Letter is perfection.

  27. I just checked in to find that Sophie just received her first treatment. I'm so happy, praying it will help, hoping it has helped a bit already.

    Your letter is eloquent and beautifully articulates a common problem. I relate to the insurance problems, premiums, and alternative treaments paid out of pocket. My boat, too.

  28. SOOoOOoo GLAD to hear the good news!!! Sophie is in my prayers!



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