Thursday, January 20, 2011

A little info and education (if you're not in the epilepsy/special needs world, you don't need to read)

Thank you for your responses to my last post about Sophie's new medication and my frustrations in getting it added to Anthem's formulary. The drug, called Vimpat or locosamide, is a relatively new anti-epileptic drug.

It is NOT investigational. Like most AEDs, though, it is approved for persons 17 years and older which is, perhaps, the arbitrary glitch that we're encountering. However, many of the drugs approved for use in epilepsy are approved for older children and/or adults and Sophie has been on all of them, no problem.

Second, the consensus overall is that EPILEPSY MEDICATIONS SHOULD NOT BE SWITCHED OR SUBSTITUTED. GENERIC VERSIONS ARE NOT RECOMMENDED. You can read more about that here.

Third, there is no appropriate anti-epileptic drug that Sophie has not already tried. Too many double negatives? Sophie's epilepsy is refractory to medication, meaning that no drug or combination of drugs up to this point has helped her. We can only hope that new drugs, as they become available might do so.

What I am trying to do, with the help of the Epilepsy Foundation of Greater Los Angeles, The Neurologist and the drug company itself, is to educate Anthem about these issues. This sort of thing happens all the time and is extremely detrimental, as you can imagine, for many epilepsy patients. What goes on their formulary of "approved" medications appears to be systematically arbitrary.

I'll keep you posted and thank you, again, for all your support and advice! Keep it coming!


  1. Best of luck with it, like you need the extra frustration! Something over at mine that might cheer you up, it is just a bit of fun but I included you and you know, compliments aren't much good if you don't know about them :) Jen

  2. I love that phrase: "systematically arbitrary," even though it means something undesirable in this instance. It's just a wonderful description.

    Is it possible that you might be able to be hired as a patient advocate or liason by one of these behmoths (insurance companies or health care systems) in your state? You are exactly who they need, and if they were smart, they would want you on their side. Do you know anyone among the powers that be in the epilepsy world who you could take out to lunch and with whom you could brainstorm? Just a little subversive idea from up north.

  3. thank you for your comment at BLOOM... I look forward to reading your blog. fun Swiss connection too! tekeal

  4. Good luck.
    We live in a different circle of 'special needs' - autism. We deal with the nonsense ridiculous rules of insurance companies as well, but I am absolutely appalled every time I read another update on the bs they put you, and more importantly, Sophie, through.
    I hope they are just ignorant and in need of education, and not the truly evil people I think them to be.

  5. Is there a creative way to a)bring the manufacturer of Vimpat into the conversion and b) to make a more public (than a blog) story about this as a general issue, because it is not only private insurers that have formularies----Medicare does, too.

  6. good luck with all of this. Sophie is blessed to have a mom like you, someone who will fight for what she needs.

  7. This is how change happens .... People in the trenches ...

  8. It is not new drug at all, just new in the discovery that it has been effective for this use.

    I know I have really "gone off" regarding this topic on your blog. What really upsets me (and why I left me the industry) is that it's just another business.

    No matter what doctors and nurses do or how much they care (and they do care) THEIR industry's control has been taken over by the ones who profit the most. Their hands are tied by people who make decisions based solely on profit.

    But this business isn't dealing with widgits, when they cut corners to maximize profits it isn't a shoddy product they deliver to consumers.

    it's people.

    They are directly effecting humans beings, the ones who desperately desire relief.

  9. I think I mentioned before the horror we had in Florida when Medicaid decided they were only paying for generic was long ago but I think it may have been Tegretol? Generic DID NOT WORK and it took the neurologists and hundreds of seizing hospitalized children to get them to change the formulary back. As a nurse 'working in the trenches" it was a nightmare. I look back on those days and can rest knowing I did my damnedest to help and fight side by side with the parent...not everyone in the medical profession can say that...and now I have a daughter who has developed we go again. It's not going to get our state cut backs have become more severe. I am concerned for the future for our elderly and medically complex.

  10. Such hard work. You do it so well, but it must be so terribly exhausting, in every way.



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