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Pity party

It is rare that I have a pity party since my diagnosis in 2005, but this morning I had a long and heart felt cry. The reason? Frustration with the medical system!!

My neurologist prescribed two medications for me three months ago. However,I am still waiting to receive them. The prescriptions went to my health insurance company who, four weeks later, denied the medications to me. The doctor’s office appealed and I was approved. Co-pay? More than $2,000.00 each a month. That’s more than I receive from social security! I am now waiting, fingers crossed with hope, that I will receive the financial assistance I have applied for.

But all this wasn’t the cause of my pity party.

I am in the throes of a relapse and a week ago my doctor prescribed a medication that will help. The insurance company approved this quite quickly. However, my co-pay would be $3,200.00! That was the trigger for the tears. The final straw.

Yours in hope of managing this ms, Hilary

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Tamsen
    5 years ago

    oh how i ache for you! dare you on medicare? can you get medicaid? cancel your private insurance or apply for medicaid as well.

    private insurance is ok if you have to do long-term care, but having to pay your deductible is insane.

    if they start you on injections or pills like ampyra, they cannot stop whether you have the ability to pay. if you can get your meds and let them bill you for your deductible, then, as you have already started the medication, they cannot deny you for your inability to pay.

    i am lucky(?) enough that my neurologist has ms, as well, and i am computer savvy and have been in the system long enough to learn the ropes.

    i was also in long-term care for 19 months and learned enough that i will never return. i will have home care for as long as i can, and when it gets to the point where i am close to becoming a head, i will take my own life.

    you have GOT to figure out long term care and if the only way to get your meds is to pay that deductible, you have to make the choice.

    meds only slow the progression. no matter WHAT you are told, no matter how many people tell you stories about how they were “cured” of MS, thy lie.

    the best that could happen is the meds slow your progression. i have yet to hear of someone who is “cured” from MS in any headlines or in any medical journal. anyone who is being seen by a neurologist and has documented proof of having MS and is suddenly “cured” would boost that doctor’s reputation into the sky. he would publish a true case of an MS cured patient in every journal hs/he could find. it would be the headliner in the new york times or at LEAST in the local paper. i hate to be so realistic but you WILL get worse.

    so you need to think about that. is it better to blow your deductible on medication that may or may not help (i have tried both rebif and ampyra; rebif made my legs feel worse and, while ampyra helped my legs, it sent me into a depression. some of the side effects of ampyra included depression and can cause a relapse. well, after stopping the ampyra, my depression went away but my symptoms in my limbs got worse. i truly wish i had not taken them.

    i do believe that if you are in early relapse/remit, ampyra would be a good thing to try; if you are primary progressive (like myself) taking any of these drugs is a bad idea.

    anyhoo, you need to take control of this situation and see what your insurance covers and see if there are more important things you might need that deductible for. again, if you get that covered and it works for you, you can blow off next year’s deductible because they can’t refuse you these drugs once you have started.

    there are also places you can apply for crises help for covering your deductibles. the national ms foundation can help you as can the MS foundation for yourv state.

    feel free to ask me for help via this site. later, if you think i can help and WANT some help, we can exchange emails. that goes for anybody who reads this comment. please remember that i, too, have MS and may not be able to respond as quickly as you might wish. i have a lot going on until next thursday so my responses might be slow. TO THE CREATOR OF THIS POST: i will return any inquiries ASAP.

    sorry this is so long; sometimes i do not know when to stop.

    this is all IMHO!

  • Andy S.
    5 years ago

    I agree with Russell. I am on Rebif and a few years ago checked with the patient assistance by the manufacturer. I got it for a very reduced price for a couple years and for free this year.

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