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We now know why the Senate Appropriations Committee zeroed out the CDC’s $5.4 million budget for chronic fatigue syndrome (ME/CFS) for next year. It wasn’t because someone was out to get ME/CFS. (It also wasn’t because someone was trying to help ME/CFS :))  It was for the most banal of reasons.

It was because nobody on the Committee knew about ME/CFS.

Inattention may have cost us the CDC CFS program.

Inattention may have cost us the CDC CFS program.

The Senate Appropriations Committee expects to be contacted by disease groups lobbying for their cause once the budget process starts in February.  Senate Appropriations Committee staffer Chol Pak reported, in a call with Carol Head of the Solve ME/CFS Initiative and Charmian Proskauer of the Massachusetts CFIDS/ME & FM Association, that he’d talked to about 100 disease groups since then. Pak evinced great frustration that the Committee was not aware of the ME/CFS communities needs.

Once the Senate Appropriations subcommittee brought out its red pen to slash $2 billion from the budget ME/CFS was apparently a sitting duck. So far as they were concerned ME/CFS was a dead-weight item that they could cut easily without any fanfare. That obviously turned out not to be true.

Pak is now very aware of the importance of the CDC’s CFS program.  (Carol Head said she got a response from the Senate committee that day after their advocacy message went out.)  He said he read every email sent to him. He now get’s it.  He’s an ally and he’s providing guidance to ME/CFS advocates to ensure that this does not happen again. (If the CDC line-item funding request remains).

He was unable, however, to change the language in the Senate Appropriations bill. It’s going to the conference with a recommendation that the CDC’s CFS program not be funded next year. The House version of the bill, on the other hand, retains the CDC’s CFS programs funding.  Carol Head and Charmian Proskauer said they were cautiously optimistic  the CDC’s CFS program would be funded but nothing is certain.

(There is no need, by the way, and, in fact, it would probably be counterproductive to email Senate staffers anymore – they got the message.)

If the line-item for ME/CFS is deleted the CDC could presumably still fund the program but they would have to take monies dedicated to other programs to do that.  That might not be an easy thing to do. The CDC, like most government agencies, however, is in a difficult fiscal situation. Two years ago the CDC’s approximately $7 billion dollar budget was cut by $430 million.  Last year it was cut by $345 million.  This year it may be getting a small portion of that back with a proposed $113 million dollar increase in funding.

The Obama administration also, however, is also proposing to more than double spending on antibiotic resistant bacteria across the DHHS.  That includes an $264 million dollar increase in funding next year at the CDC. Other winners in the proposed CDC budget include vaccines for children (+$128 million), drug overdose prevention (+$55 million) viral hepatitis (+ $35  million), bioterrorism (+$55 million).

With the CDC’s budget projected to increase only slightly next year, though, there are inevitably some big losers. They include  “Preventive Health and Health Services Block Grants” (-$160.0 million), the Immunization Program (-$50.3 million), Cancer Screenings (-$41.6 million) and others. All funding for prostate cancer is expected to be cut (-$13.2 million). These dramatic shifts in funding indicate how volatile the CDC’s budget can be. It’s not a great time for a program to be in limbo.

Oops

Oops! We forget to advocate :)…It’s a learning experience.

It’s ironic to see a program that the ME/CFS community fought so hard to retain in the late 1990’s possibly lapse due to inattention today. I was told that it was that line-item in the CDC budget – apparently inserted by Sen. Harry Reid at one point – that got the CDC in so much trouble back then.  Advocates tracking the spending realized the CDC couldn’t be spending all the money Congress had designated for ME/CFS.  Their outcry lead to the scathing GAO report, a new leader for the program, and the recovery of the funds.

(That victory may have done more than that. By highlighting the difficult environment ME/CFS found itself in – and the need it had for more protection – it may have paved the way for the creation of two unusual entities, a federal advisory committee (CFSAC) and grant review committee (CFS SEP) devoted to a single disease.)

ME/CFS advocates fought off an attempt to “zero out” CFSAC at one point about ten years ago. CFSAC has had many critics but the federal committee proved it’s worth when it birthed IOM and P2P reports this year.  Without CFSAC it’s hard to imagine those reports getting written, or serious discussions about ME/CFS moving to an Institute taking place now.

It’s not clear when the last advocate talked up ME/CFS to staffers in charge of the CDC’s budget, but in retrospect it seems remarkable that the program lasted this long given the budget cuts the CDC has endured recently.

The price of progress is vigilance. We saw recently what happened at NIAMS with fibromyalgia when advocates took their feet off the pedal. Now the same has happened to us.

The really good news is that more members of the ME/CFS community are engaged in advocacy efforts than I can  remember.  Lobbyists are being engaged. The CFIDS Association of America (now SolveME/CFS Initiative) used to be the water-carrier for the great majority of advocacy efforts. It’s not anymore; it still has access that no one else has – but the broader community is creating its own initiatives – and that’s a good sign.

There’s obviously so much to learn and we’ll see how effective and what staying power the different groups have, but it’s clear that sites like MEAction are giving advocacy new life.  Hopefully, we will retain the CDC’s CFS program and come out of this stronger, smarter and more committed.

MEAction is a great place to get engaged in these issues. You can join MEAction here.

 

 

 

 

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