• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

Dolphin

Senior Member
Messages
17,567
Recent Alert! Emily has discovered that the Affordable Care Act replacement bill that just passed the House eliminated a program called the Prevention and Public Health Fund (PPHF) https://www.apha.org/~/media/files/pdf/topics/aca/2015_pphf_fact_sheet.ashx which just so happens to fund the CDC’s program on ME/CFS. If the House bill passes in its present form the entire budget for the CDC’s ME/CFS program will be zeroed out. The SMCI will send out an alert on this. (Being able to respond quickly to something like this is why we have a professional advocate :))

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

RogerBlack

Senior Member
Messages
902
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.
 

Dolphin

Senior Member
Messages
17,567
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.
 

RogerBlack

Senior Member
Messages
902
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.

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

Dolphin

Senior Member
Messages
17,567
Same with the NIH.
There are uncommitted funds which can be applied to CFS. But obviously directly allocated funds are way more secure.
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:

Dolphin

Senior Member
Messages
17,567
I think nonspecialised funding which is being used for CFS.
Specialised CFS funding got zeroed last summer in this years CDC budget.
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.
 

RogerBlack

Senior Member
Messages
902
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.

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.
 

Emily Taylor

Senior Member
Messages
149
Location
Los Angeles, CA
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
 

RogerBlack

Senior Member
Messages
902
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.

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?
 

Emily Taylor

Senior Member
Messages
149
Location
Los Angeles, CA
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?

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!
 

Anne

Senior Member
Messages
295
Quote from another thread:
CDC - definitely under threat. The CDC receives money from many avenues. Currently, the only ME/CFS specific funding in the federal appropriations process goes to the CDC. As long as that line item stays funded (and we worked very hard to make sure it does!), the CDC will continue to receive about $5.4m per year for ME/CFS related work. That being said - the CDC overall is facing very steep cuts by the elimination of the Prevention and Public Health Fund (PPHF) and we've heard rumors that a number of programs are facing elimination and restructuring. We cannot say for sure whether or not ME/CFS will be one of those programs. We have strong advocates for our work within the CDC and they have assured us the multi-site study is not threatened this year. At this time, not a single budget bill for FY 18 has been released - so we cannot confirm that.

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=
 
Messages
15,786
Last week, the House Appropriations Subcommittee on Labor-HHS finally released their vision of federal spending for Fiscal Year 2018 in H.R. 3358.
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: