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Thread: Kaiser survey of drug company donations to patient advocacy groups for 2015

  1. #1
    Distinguished Community Member agate's Avatar
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    Default Kaiser survey of drug company donations to patient advocacy groups for 2015

    The Kaiser Health group has done a survey of over 1,200 patient advocacy groups, including the MS Society and quite a few of its chapters, to find out how much of their funding comes from Big Pharma.

    https://khn.org/patient-advocacy/#

    The National MS Society got only a small proportion of its revenue from the pharmaceutical companies but it's still a considerable sum--over $549,000. Some of the regional chapters received little or no funding from the drug companies.

    If my arithmetic is right, the National MS Society gets 0.4% of its revenue from the drug companies.
    Last edited by agate; 04-13-2018 at 07:47 AM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  3. #2
    Distinguished Community Member Sunshine's Avatar
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    Lots of money, even if it’s a small percentage!

    What are they doing with all their money? Do they fund research? Are they top heavy in admin costs?

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    Distinguished Community Member agate's Avatar
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    They seem to be rated rather well according to this (3 out of 4 stars):

    https://www.charitynavigator.org/ind...ary&orgid=4189
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Distinguished Community Member Cherie's Avatar
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    NMSS allots only 9 cents on every dollar raised to patient programs. 47% goes to salary and upkeep of properties or rents. 22% to fundraising efforts and the rest to research. I do not like how this group works. I have done numerous programs for them over the years and they never compensate for travel or time or offer an honoraria. The MS Foundation puts 87% of monies donated directly into patient services and has only one office in the US with a handful of full time employees and they do good work. The do grant writing to compensate me for travel and speaking and in return I give back a hefty portion of every honoraria to the organization to continue to give to the folks it serves. MSAA has only a handful of offices in the US and gives back nearly half of its income to patients and program. The NMSS is really not the best place to give if one wants to help people with MS.

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  9. #5
    Distinguished Community Member agate's Avatar
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    Over the years I've had the impression that the NMSS is more interested in funding research than in patient services, and that the MSAA and MS Foundation offer more services that can help to improve the daily lives of people with MS than the MS Society does.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  11. #6
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    That's exactly my view too, Agate.

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    There comes a time when silence is betrayal.- MLK

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