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(US) House bill eliminates CDC's ME/CFS research program budget

Discussion in 'Other Health News and Research' started by Dolphin, May 6, 2017.

  1. Dolphin

    Dolphin Senior Member

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    https://www.healthrising.org/blog/2017/05/05/smci-emily-taylor-me-cfs-professional-advocate/
     
  2. Snow Leopard

    Snow Leopard Hibernating

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    So if this passes the senate?
     
  3. geraldt52

    geraldt52 Senior Member

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    Worst case, we will have lost the organization and people who have done so much to help us for 30 years?
     
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  4. Dolphin

    Dolphin Senior Member

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    Personally I think their current research programme focusing on expert clinics is better than not having one.
     
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  5. Snow Leopard

    Snow Leopard Hibernating

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    There has been some good over the years and the bad, well, all the worst people are no longer there.

    Fact is, once lost, this programme is unlikely to be coming back. I'd rather reform than lose outright.
     
    Last edited: May 10, 2017
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  6. RogerBlack

    RogerBlack Senior Member

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    I think nonspecialised funding which is being used for CFS.
    Specialised CFS funding got zeroed last summer in this years CDC budget.
    How helpful the work the CDC was doing with that budget is questionable, but it's clear that considered from a total governmental spending perspective, CFS spending hasn't risen nearly as much as the NIH headlines for new money would say.
    Or worse - with this new announcement.

    Of course, the fight for 2018 is happening now, in budget for the CDC and NIH - that doesn't need bills at this point, and the announcements of massive planned cuts should put everyone on their guard - this year 'not much' has changed.
     
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  7. Dolphin

    Dolphin Senior Member

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    Just to point out to anyone doesn't know: the CDC doesn't have to have a CFS-specific program. It doesn't have a program for most illnesses. I would say if we lose this it is unlikely to come back.
     
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  8. RogerBlack

    RogerBlack Senior Member

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    Same with the NIH.
    There are uncommitted funds which can be applied to CFS. But obviously directly allocated funds are way more secure.
     
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  9. Dolphin

    Dolphin Senior Member

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    I don't think it's the same as the NIH. The NIH funds research for basically all major illnesses, though I suppose technically there's no guarantee. The CDC doesn't have specific research budgets for a lot of the major illnesses, but it does for CFS. So the CDC gives more for CFS than it does for a lot of illnesses that get a lot more with the NIH. We are lucky to have a specific budget.
     
    Last edited: May 7, 2017
  10. Dolphin

    Dolphin Senior Member

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    I'm not sure we have any evidence that how CFS is funded by the CDC has changed. There was a proposal to zero the budget last year but I don't think that actually happened.
     
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  11. RogerBlack

    RogerBlack Senior Member

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    The congressional justification presented by the president to congress had it zeroed.
    https://www.cdc.gov/budget/fy2017/congressional-justification.html (Presented by Trump, but entirely written by Obama(in the sense they write these, they usually have essentially no input)).

    It is my understanding that this is significantly more 'set in stone...

    I was going to continue writing this post, but unfortunately my head has exploded.
    I had been operating under the implicit assumption that this stuff was passed in a manner which made general sense, but stalled on actual reality. May come back later.
     
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  12. Emily Taylor

    Emily Taylor

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    Hi Dolphin!

    Thanks for getting the word out - I hope I can help answer some questions. The Prevention and Public Health Fund (PPHF) is a funding stream that was "created" by the Affordable Care Act (ACA). I put "created" in quotes, because it really just streamlined and combined a few other funds that had been scattered about and also added some fresh resources too. The whole fund (totaling just under $1 billion) is spread into 16 different programs - everything from ME/CFS to breast-feeding, to lead poisoning.

    The $5.4 million ME/CFS program at the CDC is ALL CDC activities related to ME/CFS; medical education, the multi-site study, the Common Data elements - all of it. And the CDC gets money for this program from the PPHF. If the PPHF is eliminated, the funding source for our ME/CFS programs dries up and the programs will likely disappear with it.

    I will add that it is 1000000x times harder to create a new program than improve an existing one. Whether or not you think the CDC is doing a good job, from an advocacy standpoint, it is much easier to push the CDC to do better than to create a brand new program from scratch (without funding.)

    Just a quick reminder - next week is ME/CFS Advocacy week! So please join our actions and raise your voice for ME/CFS funding!

    You can learn more about our efforts here: http://solvecfs.org/2017-mecfs-advocacy-week-information-and-updates/

    In solidarity,

    ~Emily
     
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  13. RogerBlack

    RogerBlack Senior Member

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    That 5.4 million has been seperately zeroed in the budget for 2017, doesn't that have any impact?
    How does this work in practice - does the CDC entirely ignore the budget that has been proposed until it's gone through the full process and is approved, even though that may be near the end of the nominal financial year?
     
  14. Emily Taylor

    Emily Taylor

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    Great question, RogerBlack! The US Federal appropriations process is a really crazy and complex mess. But somehow it works! There are two things to consider "funding streams" (ie where the money comes from?) and "appropriations" (ie is the money is authorized to be spent?)

    The PPHF is the funding stream fueling the ME/CFS program at the CDC - the appropriations process (and the final legislation) gives the CDC permission to spend and use that money.

    So, essentially your are right. CDC operations are not "directly" hindered by the budget talks until the final budget is approved and signed by the president. However, in practice the agency folks CLOSELY watch the budgeting process and will alter spending or budgets mid-stream if it will secure or assist future funding.

    I hope this answers your question!
     
  15. Anne

    Anne Senior Member

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    Quote from another thread:
    It seems @Emily Taylor was right and the CDC ME/CFS budget is now under immediate threat - again.

    From SMCI (Solve ME/CFS Initiative):

    Take action! Restore ME/CFS Funding now!
    Last week, the House Appropriations Subcommittee on Labor-HHS finally released their vision of federal spending for Fiscal Year 2018 in H.R. 3358. We are disheartened to share that the accompanying committee report, again, zeroed out the $5.4 million line item for Chronic Fatigue Syndrome at the CDC’s Center for Emerging and Zoonotic Infectious Diseases. Now, we turn to the Senate to restore the funding for these critical research, education, and awareness programs.

    To push back against this reduction, we’ve made it very easy. Send a message to your members of congress.

    SMCI asks all US ME patients to take action:
    https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00009&cid=
     
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  16. Valentijn

    Valentijn Senior Member

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    Who's on this subcommittee? Should we be trying to get them un-elected if they keep doing this every bloody year? Probably easier and cheaper than hiring a lobbyist :grumpy:
     
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