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CDC 2017 budget

Discussion in 'General ME/CFS News' started by halcyon, Jun 27, 2016.

  1. halcyon

    halcyon Senior Member

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    Perhaps this has already been posted elsewhere and I completely missed it, but it looks like the CDC CFS budget is on the chopping block again for FY 2017:

    Source
     
  2. Gemini

    Gemini Senior Member

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    I only did a quick scan & date I saw is on attached charts- Feb 9, 2016?

    Is there a more current date on it by any chance?
     
  3. Bob

    Bob

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    So is this a CDC document? Is this the CDC itself proposing to eliminate the CFS budget? From the wording, it seems as if they want to entirely eliminate the CFS program?
     
  4. Bob

    Bob

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  5. halcyon

    halcyon Senior Member

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    Yes this appears to be an official CDC document. I'm not sure what else to do but shake my head at what they wrote. The stated goal of the program has clearly not been achieved so I don't know why they included that as a justification for cutting the funding. And I don't know how else to parse the last part of the last sentence other than that they're saying the money could be better spent on something else, right after they acknowledge that the disease affects millions of people. These are reasons to keep the funding not to cut it.
     
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  6. medfeb

    medfeb Senior Member

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    Here's my understanding...

    This is the budget justification prepared by CDC and submitted to congress as its 2017 budget request. And yes, it does eliminate the funding for CDC's CFS program. At this point, its up to Congress to either accept this or reinstate the budget. Under normal circumstances, the budget for next year would be passed by the end of this year. If congress can not agree on a budget, they can agree to a "continuing resolution" for a certain amount of time in which case the budget continues at the current level, remaining the same as the current year.

    Note that this is different from what happened last year (FY16) when the budget was cut during the congressional appropriations process, not by CDC. For FY17, the budget cut was made by CDC itself in its submission

    Advocates met with congressional leaders in the spring - including those involved in the appropriations process - to request that the budget be reinstated by Congress

    Regarding the text included in the budget justification as justification for the cut... I agree that the text provided is weird and is reason to keep the program, not cut it. Its hard to say how or why this happened. This might suggest that those preparing the budget justification that eliminated the budget took that action without the input of those running the program at CDC.
     
    Last edited: Jun 30, 2016
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  7. Groggy Doggy

    Groggy Doggy Mermaid, lost at sea

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    I interpreted the strange wording to mean... NIH is studying our illness, and has been funded to do so for the last 5 years. And that there is nothing new for the CDC to report out in 2017, because the NIH evidence based studies are on-going and have not concluded anything substantial.
     
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  8. JayS

    JayS Senior Member

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    I only wish their funding had been yanked a long, long, long time ago. The response to this idea last year was mostly protests about the importance of the multi-site study. My feeling was that having that group fold up wasn't likely to bring about a result any worse than what we've been dealing with for decades.

    So long as they've declared PEM to be something they can't define, their job may well be done. Had their funding disappeared prior to that revelation, we might well be in better shape today.
     
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  9. Dolphin

    Dolphin Senior Member

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    I have not seen this issue raised before this thread but it is mentioned in the following:
    http://millionsmissing.meaction.net/protest-demands/

     
  10. Dolphin

    Dolphin Senior Member

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  11. medfeb

    medfeb Senior Member

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    Hi @Dolphin - Not sure how much exposure it got but this was also covered back in February/March when we first found that CDC had eliminated the program in its submitted budget. It was at that time that advocates contacted congressional leaders and appropriations about the 2017 budget and let them know about this issue and also what we were asking for - the appropriations process includes a report through which Congress can request actions of the agencies so these are not just dollar requests.

    One report on the DC visit is here:
    http://solvecfs.org/Carol Head Meets with NIH Congressional Staff
    "The Appropriations Committee staff members were helpful in suggesting changes to the Appropriations language requested by the advocacy group. They noted that the reinstatement of the $5.4 million to the CDC line item was the highest priority."
     
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  12. Dolphin

    Dolphin Senior Member

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    Okay. I may have interpreted that as referring to the 2016 budget.

    I am surprised that there hasn't been more talk of it. Hopefully there are some people working on it. But it would probably be good to get more.
     
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  13. Bob

    Bob

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    Maybe I'm confusing the 2016 and 2017 budgets. There was plenty of exposure in relation to the community's advocacy efforts at congress. But I couldn't remember which budget year it related to. Also, I don't remember the CDC itself proposing that the CFS program should be scrapped. I thought the proposal had come from congress.
     
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  14. medfeb

    medfeb Senior Member

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    @Bob - I understand. Its confusing.

    For the fiscal year 2016, it was congress that cut the program budget and that was then reinstated at the end of 2015. But for fiscal year 2017, CDC was the one that eliminated the budget in its congressional submission that was submitted in early February 2016. The discussions in March 2016 reported by Solve ME/CFS were referring to the fiscal year 2017 budget and asking appropriations to reinstate it. (Edited - previously said discussions reported by Solve ME/CFS were in "march 2017")

    The challenge with CDC of course is that their program budget is used in part for medical education and their medical education has contained erroneous information. Unfortunately, as recently as February of this year, CDC has continued to include Oxford/psychogenic studies as references in communication about the disease. So, IMO, we need to simultaneously push for a correction of the med ed problem, not just push for the budget issue to be resolved.

    CDC is currently updating its med ed information and we don't yet know whether it will continue to incorporate this evidence and studies like PACE as the basis of statements about the nature of the disease and recommendations for treatments. Right now, the position appears to be that these studies are part of the evidence base for the disease and can't be ignored, in spite of P2P calling for Oxford to be retired and IOM highlighting the systemic intolerance to exertion.
     
    Last edited: Jun 30, 2016
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  15. medfeb

    medfeb Senior Member

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    FYI

    The Senate has released a preliminary report for the 2017 budget that reinstates the 5.4M budget for ME/CFS and also includes additional recommendations. Note this is still preliminary and the House still needs to release its version and the two need to be reconciled. But its a step.

    The additional recommendations are
    Chronic Fatigue Syndrome.--The Committee applauds the CDC's efforts to collaborate with disease experts in its multi-site study. The Committee is pleased that the National Academy of Medicine [NAM] has clarified the disease definition and that the NAM and the CFS Advisory Committee have made recommendations to educate the medical community. The Committee encourages CDC to leverage those recommendations to provide new clinical guidelines and to execute a broad-based medical education campaign. To address the critical lack of access to clinical care, the Committee encourages CDC to work with the NIH and other agencies within the Department to find creative ways to support a clinical care component to regional Centers of Excellence.

    Chronic Fatigue Syndrome [CFS].--The Committee is pleased to see the 2015 reports from the Institute of Medicine and the NIH's Pathways to Prevention Workshop, along with the recent advances in science and renewed interests of researchers, relating to CFS. The Committee urges the NIH to collaborate with disease researchers, clinicians, patients, and their advocates to address the historical lack of research and to capitalize on these opportunities to make progress on this poorly understood disease. Specifically, the Committee encourages NIH to use funding to jumpstart the field through a set of intramural and extramural investments that could include Funding Opportunity Announcements for biomarkers and treatment trials; other investigator-initiated studies, including for early-stage research; and support for research to develop consensus on a case definition and research standards.
     
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  16. Groggy Doggy

    Groggy Doggy Mermaid, lost at sea

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    Excellent, who can we thank for driving this?
     
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  17. Bob

    Bob

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    @medfeb, thanks so much for the information, and a huge thanks to the advocates working tirelessly behind the scenes to accomplish this. This accomplishment has mainly come about under the radar of the patient community.
     
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  18. Anne

    Anne Senior Member

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    @medfeb

    What happened to this in the end? Was the 5.4M budget reinstated for 2017?

    Do we know why the CDC wanted to eliminate their ME/CFS program? Will it happen again?

    THANK YOU so much for your excellent advocacy!
     
  19. medfeb

    medfeb Senior Member

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    @Anne The money was reinstated in the congressional appropriations report for fiscal year 2017. It's hard to tell why this happened - the budget had been temporarily reduced to zero by Congress the year before and maybe the people preparing the 2016 budget picked that up. We don't expect it will happen again but will watch for it when the agency budget justifications come out in Feb.

    And thank you for your kind words. I appreciate it.
     
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  20. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    will there be any protests for this?
     

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