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Thread: MSAA research review for 2016

  1. #1
    Distinguished Community Member agate's Avatar
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    Default MSAA research review for 2016

    The MSAA (Multiple Sclerosis Association of America) has summarized MS research for 2016. The report can be seen here.

    Many new drugs are mentioned, and there is an MS Coalition consensus paper stating that patients' disease-modifying therapy shouldn't have to be interrupted because of difficulties with insurance companies' unwillingness to pay:

    • Treatment should not be withheld to allow for determination of coverage by payers as this puts thepatient at risk for recurrent disease activity.
    I'm not sure how this kind of gap in treatment is going to be prevented.

    Last edited by agate; 05-29-2016 at 09:49 AM.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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    Distinguished Community Member SuzE-Q's Avatar
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    Thanks so much, Joan!

    I scanned it, but I look forward to reading the entire document.

    Perhaps pressure can be placed on big pharma to lower their prices?

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    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by SuzE-Q View Post
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    Thanks so much, Joan!

    I scanned it, but I look forward to reading the entire document.

    Perhaps pressure can be placed on big pharma to lower their prices?
    I'm wondering what kind of pressure would work. Big Pharma hasn't had any hesitation about seeing people cut off from getting a DMD just because their insurance wasn't covering it any more or for some other financial reason. I haven't run across very many people who feel able to afford those DMDs.

    In fact, I haven't noticed any people who feel that $30,000-$65,000 a year (or whatever it is for a DMD) is affordable.

    Big Pharma has found something that seems to help at least some people with MS, and they price it out of the reach of most people. Makes no sense to me but Big Pharma isn't running a charity. Regrettably.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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    Distinguished Community Member Frog42's Avatar
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    Quote Originally Posted by agate View Post
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    Big Pharma has found something that seems to help at least some people with MS, and they price it out of the reach of most people. Makes no sense to me but Big Pharma isn't running a charity. Regrettably.
    That's because their deity is GREED!


    Whatever happens around you, don't take it personally. Nothing other people do is because of you. It is because of themselves. -- Miguel Ruiz

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    Vicky you are 100% right. GREED is the right word to use.

    Suze, I think you can forget about help from the pharmaceutical companies. My insurance pays for a portion of mine and Patient Assistance Network pays for the other part. If not for that I could not afford the DMD I am on. Few people could possibly afford these drugs year after year, and yet the Big Pharmas don't hesitate to raise the price of them. I don't much think they are going to come down any.
    Virginia

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    Distinguished Community Member agate's Avatar
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    And so the DMDs are yet another cruel joke on people with MS.

    Like the businesses and other establishments, even clinics and medical facilities, that advertise that they are wheelchair accessible but they turn out to have heavy doors that don't open automatically or an impossible bathroom.

    "Oh, you have MS? Well, we have a drug that just might help you. Then again it might not--you probably won't ever know for sure but you should take it anyway. ... Oh, and the price to you? You won't be able to pay for it but you could always try setting your situation out on GoFundMe and seeing if anyone donates."
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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    I will say I think they probably get most of their money from people who have spouses who are still working and have insurance that is good insurance and covers
    these drugs. Also, some of the people with MS have insurance that covers most all of their drugs because they are still working.

    I have Prescription Part D that covers a good part of mine, but I could not afford the co-pay it is so high with my insurance. So that is where Patient Assistance Network comes in.

    But to sum it up there are enough people with MS either working or covered by spouses insurance that are still working. I think this is where the vast majority of the Drug Company's money comes from.

    If patient assistance network does not continue to fund me then I will be calling the maker of my DMD and we will find out if they care or not.
    Virginia

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    Quote Originally Posted by Virginia View Post
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    I will say I think they probably get most of their money from people who have spouses who are still working and have insurance that is good insurance and covers
    these drugs. Also, some of the people with MS have insurance that covers most all of their drugs because they are still working.

    I have Prescription Part D that covers a good part of mine, but I could not afford the co-pay it is so high with my insurance. So that is where Patient Assistance Network comes in.
    But how demoralizing for them to force us to need "patient assistance" in order to pay for their d@mn drug, despite many not actually being even "poor", just not wealthy or with good insurance.

    It's bad enough that we often can't work and therefore, may not have gold star insurance because of it to afford their drugs, but then they make us feel like we need to grovel to get their "patient assistance" to obtain the med that may or may not help, and may or may not harm. Look what Cherie has just had to go through! They make us feel like we need or are given a handout and are a burden.

    Yet, they set these sky high prices based on what their calculation is that most insurance companies will pay.

    The rest of us have to grovel. And feel like crap. Or go without.
    Last edited by SuzE-Q; 05-29-2016 at 09:29 PM.

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    Distinguished Community Member SalpalSally's Avatar
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    So true....Grrrrrrrrrrrrrrrr!
    Love, Sally


    "The best way out is always through". Robert Frost







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