A month ago, patient advocate Jennifer Spotila discovered that the U.S. Senate was proposing to zero-out the ME/CFS budget at the Centers for Disease Control and Prevention.
This discovery launched a wave of emails, letters, and phone calls to key Senate staff from hundreds of people, including representatives of six different ME/CFS organizations. After this coordinated effort, we now know what happened – and we’re hopeful that $5.4 million in CDC funding will be restored for fiscal year 2016.
On Aug. 27, Senate Appropriations Committee staffer Chol Pak spoke with Carol Head of the Solve ME/CFS Initiative and Charmian Proskauer of the Massachusetts CFIDS/ME & FM Association. Pak is largely responsible for the CDC’s budget in the Senate.
Pak said that back in February when the budget process began, he knew nothing about ME/CFS. The Senate was looking to cut a big chunk from the CDC budget, and they began hunting for places to trim. Pak hears from many patient advocacy groups during the annual budget process, but no one had contacted him about ME/CFS. A small program with no representation on Capitol Hill was a prime candidate for slashing, so Pak and his colleagues zeroed out the proposed $5.4 million ME/CFS fund in the Senate’s proposed CDC budget.
Pak is now well-informed about the illness. He read every email sent by ME/CFS advocates, and he responded to many. He understands the importance of continuing to fund the CDC’s “Multisite Clinical Assessment of CFS,” and he now knows that researchers are on the cusp of a breakthrough in understanding ME/CFS. Head and Proskauer left the meeting “cautiously optimistic” that the original $5.4 million in ME/CFS funding passed by the House of Representatives will be restored in the appropriations bill before the budget becomes law.
There is no need to send more letters to Senate staff working on the CDC budget. Letters to your Senators and Representatives about the general need for more funding are always helpful.
ME/CFS organizations learned a lot from these discussions – namely the importance of a constant presence on Capitol Hill. Pak expressed frustration that he had no information about ME/CFS when the budget process began.
Each February, Congress starts work on the next year’s budget, and this is when staffers responsible for the CDC and NIH budgets start meeting with patient advocates. This year, Pak said, he met with over 100 disease groups.
The appropriations bill then moves through hearings in the spring, and a final vote before the fiscal year begins Oct. 1. (Note that Congress has not met this deadline for several years, instead operating on a continuing resolution that freezes spending at the previous year’s budget.)
What are our next steps? Our organizations are going to continue close contact with House and Senate Appropriations staff responsible for CDC and NIH funding for ME/CFS. The message is simple: If they don’t know about us, they don’t know why they should fund us.
#MEAction is seeking to retain a lobbyist to advocate on our behalf on an ongoing basis. Donate to support that endeavor.
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28 thoughts on “CDC Funding Update: The Importance of Raising Our Voice”
Thank you for this eye-opening update. I guess we need a few lobbyists as badly as we need the research funding.
Hi, just wanted say thank you from the bottom of my heart for all the great work you’re all doing at meaction.net. and pray that someday very soon we’ll see a cure for ME/CFS.
GOD Bless you!
This article is a perfect example of why some organizations receive generous funding for their diseases no matter how rare or how few people affected (e.g. Thalassemia, Cooley’s, Foundation with only 1,000 people affected receives $11million annually): they obviously keep the key congressional persons informed and lobby at appropriate times for their diseases. It’s just that simple while we’ve been trying to reinvent the wheel. I am so glad that various people responded and that hopefully our $5.4 from the CDC will be reinstated. I noticed that a statement was made to cease and desist with further education of these key players and wouldn’t know why that would be said. February is just around the corner and we should be requesting more money than what we currently receive. It’s fabulous to see some headway being made with the NIH and HHS as well but I feel we need to remain pro-active on a constant basis. marcie
Hi Marcie – Mr. Pak’s job is not to listen to constituents. Individual Senators have staff whose job it is to read correspondence from constituents and respond. Mr. Pak’s job has nothing to do with that – he oversees the CDC budget for the Senate. He told the two advocates who went to the Hill that he has heard their message, he understands the importance of restoring the CDC funding, etc. His job is to meet with representative of disease groups. The fact that he received hundreds of emails about this is good – but continuing to bombard him will be counter-productive.
Dear Brian, I hear you. I am asking since Mr. Pak had basically inquired as to why we had waited so long, when is the right time and when is enough enough? If budgets begin in February, do we begin lobbying in January? I have no answers as I’m terribly unknowledgeable as to how and when our congress works. Since we’ve identified the problem, who will put it on their calendar to address it when it is again the appropriate time? And how does Cooley’s with only 1,000 patients receive $11million annually? They do have a national organization and we do not. Unfortunately, some of our efforts are fractured. My thanks again to Jennie Spotila for her discovery of this slashing of CDC funding and wish her well during her period of retirement. There’s been no “new” Jennie appointed. More questions; no answers. And what is the price of a lobbyist and how does our many groups go about finding the right one?
Bravo! And thank you and your team for all efforts on our behalf. I wish I had enough money to donate to hiring a lobbyist. My disability funding prevents that for the time being, but I’ll see if I can save up. I believe it may be the most important thing any of us can do at present.
I have been shouting this from the roof tops for years! I have explained until I’m red in the face about my friend’s battle with the Forestry Service that got nowhere until they got a lobbyist! They were battling for 100’s of millions of dollars in taxes or lost cabins and in the end won because they had a voice that just kept pestering senators and congress people finding where the sympathies lied. Right now this is far more important than any CFSandME organization etc.,. Get a name, find their salary, let’s fund it!
Great that Carol Head and Charmian Proskauer were on top of this! Let’s hope SMCI adds a Washington-based staffer or two to their roster for precisely this reason.
SCMI has modified its mission such that they are now a research organization and no longer engages in advocacy work.
We have engaged a Washington-based consultant to help us engage with Congress around the 21st Century Cures Act http://meaction.net/2015/08/17/lobby-congress-for-nih-funding/ and are seeking funds to have someone in Washington representing our interests on behalf of #MEAction throughout the year.
Thank you for all your efforts in advocating for ME, and I agree that a full-time lobbyist is needed.
I just want to clarify some of the information in your post. Specifically, that there was no representation for ME patients on Capitol Hill – especially regarding the appropriations committees.
MEadvocacy.org has been busy at Capitol Hill this year and through our one click apps over 2,190 messages have been sent to members of congress asking for $250 million in funding. http://www.meadvocacy.org/tell_congress_to_increase_funding_for_me_research.
This spring, MEadvocacy organized and accomplished successful demonstrations in DC. http://www.meadvocacy.org/me_patients_visible_at_the_capitol_pictures_and_videos
But more importantly, MEadvocacy sent in written submissions to the Senate as well as the House appropriations committees in a timely fashion. Please see here, the submission to the Senate Appropriations Committee by MEadvocacy.org. https://d3n8a8pro7vhmx.cloudfront.net/meadvocacy/pages/9/attachments/original/1430839607/Copyofwrittentestimonytothesenateappropriations_(1).pdf?1430839607
In addition, MEadvocacy had an advocate attend both the Senate and House Appropriations Committee meetings in person. This advocate also visited with and talked with key members of the appropriations committees. Please note, this advocate is paying dearly for this advocacy work and had a subsequent decline in her health from all these activities. She gave them extensive information packets, carefully prepared by MEadvocacy. I also know of two other advocates that visited appropriation committee members during this time. Please read about it here on MEadvocacy’s blog – http://www.meadvocacy.org/want_to_get_250_million_for_me_let_s_reach_congress_now
I don’t know why the staffer, Mr. Pak claims he never heard of ME/CFS. Certainly, it is hard to believe that a single staffer has the power, on his own to eradicate CDC funding for a specific disease without the approval of the key members of the appropriations committee?
In any case, MEadvocacy’s written testimony has been entered in the records of the Senate appropriations committee and should be easily accessible.
Gabby Klein
That is incredible. I know that MEAdvocacy was organizing demonstrations, but I did not realize you had also met with appropriations staffers – we’ll look into this further to try to get a better sense of why this is the feedback we are getting from the senate. Thank you so much for providing this missing context!
Hi Gabby – Thank you for writing a response with this info. It sounds like you did a lot of good work this past year…do you have any idea if you reached Mr. Pak or the three other staffers that oversee the CDC budget in the Senate? (I don’t have the other three names.) As for your question about if a single staffer can eradicate a line item in the CDC budget like this…the answer is yes. Of course, the Senate has to approve the entire budget, but a small amount like $5 million can be cut by a single staffer.
Wow. Good job guys!
I’m now wondering why no one has denied our CDC funding sooner. Given the ridiculous name and the tiny funds… Did another “CFS” advocacy organization have someone attending these meetings previously? Or did the process change? Maybe this is the golden ticket? 🙂
The answer is probably that until this year, the Senate was not looking to slash the CDC budget. When budgets are steady or growing, no one on Capitol Hill has to hunt for cuts to make.
Thank you, Gabby Klein and MEadvocacy, from the bottom of my heart, for everything you are doing!
Brian Vastag,
MEadvocacy has targeted most of their efforts toward Capital Hill and reaching out to congressional representatives – especially those on the appropriations committees.
We were concentrating on raising NIH funding, not thinking that CDC funding was as crucial or at risk for erasure.
I guess we are collectively learning and this is all good.
I just couldn’t let all the efforts that MEadvocacy has expanded go unnoticed.
I would love to know if they felt the need to keep male pattern baldness funded at it’s current levels?
Also. what is the going rate for a good lobbyist salary? Someone with the right connections and passion about this cause would be something I would lobby friends to donate to.
If any disease needs the best we do.
I looked into male pattern baldness funding earlier this year but couldn’t find a record of it in the NIH project reporter. I think there must have been a year where there was more funding for baldness than ME/CFS but I don’t think it’s the case any more. That said, hay fever gets more funding as does other illnesses that are not as disabling as ME/CFS.
We are looking into lobbyist salaries, which can vary a lot. We have a consultant working on the 21st Century Cures Act but he is not a full-time lobbyist and is moving soon. I agree that we deserve the best to make up for the years of gross underfunding.
We had a lobbyist for years, paid by the CFIDS Association of America (CAA), Tom Sheridan. Unfortunately, he was also an advocate for AIDS, and when AIDS funding conflicted with our needs, we got shut out.
I also found to my dismay that he still believed that Ampligen was a hoax (an old AIDS myth dating back to a failed experiment at DuPont because they insisted on using plastic bags to dispense Ampligen – it’s an artificial protein, and proteins bind with plastic, so you must use glass – they insisted on using plastic and the IV solution that went to the AIDS patients in the study had no active Ampligen IN it – Hemispherx won a court case over it.) I asked him just how he think I went from a wheelchair one year to being able to walk around the next, and he walked out of the room without a word (just like the CDC and NIH folks did …) He would not listen to any of us who were actually on the drug – he adamently refused to lobby for it.
He also did not understand our disease in crucial ways. They would hold a two-day effort at lobbying for May 12. Good idea, for ONE day. But they insisted we have a day-long workshop in a DC hotel room or they wouldn’t let us go on the lobbying the next day. Care to guess what happened? I remember one year bringing my bed clothes down from the hotel and lying on them. I hadn’t anything to eat, and a kind healthy in the room went and got me something. Tom asked me to go up on the stage and role-play. I said he had a choice – he could have me active on Day 1 in his workshop, or active on Day 2 for lobbying – but I couldn’t be active (or coherent) two days in a row. He didn’t believe that. No comment.
SO – my long-winded tail is to warn – we DO need a lobbyist; I’m happy to put something in the pot for a professional lobbyist – but be careful what you wish for – make sure it’s a lobbyist who is operating in our best interests.
Mary, I respectfully disagree. The Sheridan Group put in a tremendous amount of work in organizing those Lobby Days and patients were able to speak with dozens of staff members and congressmen. Patients and researchers were able to testify before Congress. Young people, including my daughter, were able to tell their stories. The Senator from my state was visibly moved by my daughter’s story and that is something that I could not have imagined. Of course it was exhausting, but many patients who came were inexperienced in speaking about their illnesses in public and needed the first day of training. As Congress changed, the ability to have access changed and it became more difficult to have effective Lobby Days. I would not have been brave enough to speak out as many times as I did if Tom Sheridan had not encouraged me the first time that I spoke out at CDC in 1992. I had been very ill for 9 years by then, but my daughter had developed the illness the year before and all of my frustration and anger found a productive channel.
I understand that you wanted Ampligen to be a greater focus for the lobbying efforts, but the point was to raise awareness and call for increased funding for the illness as a whole. Perhaps that could have been a separate effort organized by those involved in the Ampligen trials.
Congratulations on a great job! This proves how important it is to support an advocacy presence in Washington, DC. ME/CFS is not a rare disease but apparently it is still an unknown entity. Perhaps an organized letter writing campaign, describing the disease and its actual impact on human lives, should be sent to everyone of our congressional leaders with an ask for more research funding.
Anne Whittmore,
Such a letter exists and you can easily send it to your representative with the easy one click method.
http://www.meadvocacy.org/tell_congress_to_increase_funding_for_me_research
I am writing to you as a constituent and deeply concerned citizen. I need you to be my champion regarding the severely debilitating, chronic, neuro-immune disease Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). ME patients are too sick to advocate for themselves, and so this condition doesn’t have the widespread awareness that other severe diseases do. That’s why political action on ME patients’ behalf is vital. Specifically, I need your help to increase National Institutes of Health (NIH) funding, establish Department of Health and Human Services (HHS) nomenclature, and modify HHS diagnostic criteria for this horrific disease.
An estimated one million Americans suffer from ME, a long-term disease that primarily targets young, previously healthy adults from diverse ethnic and socioeconomic backgrounds. The disease is so severe; it renders a quarter of its patients bedbound and unable to care for themselves. More than half are disabled and can’t work, attend school, or participate in daily life activities. ME patients do not spontaneously recover. ME patients are known to be “more functionally impaired than those with type 2 diabetes, congestive heart failure, [and] multiple sclerosis.” The Centers for Disease Control (CDC) estimates ME’s annual burden on the U.S. economy to be $17-24 billion. However, the NIH consistently places ME at the rock bottom of its budget, with barely $5 million/year. This is less than the NIH allocates for hay fever, and is nowhere near its allocation for other similarly burdensome diseases:
2014 HHS/NIH funding U.S. patient population Funding per patient
HIV/AIDS $2.9 billion 1,200,000 $2,481
M.S. $102 million 400,000 $255
Parkinson’s $139 million 1,000,000 $139
ME $5 million 1,000,000 $5
As a result, ME has no known cause, no FDA-approved treatment, and no cure. The lack of progress in ME research over the past 30 years is appalling, and is reflected in the absence of a standard of care for ME or even a knowledgeable response from most medical practitioners when encountering these patients and their families. Accordingly, I strongly urge you to direct the HHS to fund biomedical research for ME in the amount of $250 million, which is commensurate with the disease’s severity and burden.
To move the science forward on ME, the disease also needs appropriate nomenclature and well-defined diagnostic criteria. Originally named Myalgic Encephalomyelitis (ME) in London in 1955, ME is known in the U.S. by the less scientific and more trivial name, Chronic Fatigue Syndrome (CFS). For this reason, HHS’s Chronic Fatigue Syndrome Advisory Committee (CFSAC), ME medical experts, patients, their advocates, and their families have long implored the HHS to adopt the disease’s historical name, Myalgic Encephalomyelitis, which more accurately refers to the disease’s infectious neuromuscular nature. This makes particular sense given that ME will appear in the 2015 U.S. ICD Codes as U.S. ICD-10-CM under the neurological category (G93.3), and it has been coded under the neurological disease code (G93.3) by the World Health Organization (WHO) since 1969.
Similarly, HHS’s Chronic Fatigue Syndrome Advisory Committee (CFSAC), ME medical experts, ME patients, their advocates, and their families have entreated the HHS to strike its current, overly-broad ME diagnostic criteria in favor of the well-defined, globally-accepted Canadian Consensus Criteria (CCC), which was established in 2003 by a team of international ME medical experts. The International Association of Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME), the field’s professional organization, has officially endorsed and adopted the CCC standards, as have at least 50 ME medical experts, almost 200 ME advocates, and more than 6,000 patients. The 2011 International Consensus Criteria (ICC) revision is also well-established and alternatively acceptable.
In conclusion, as a deeply concerned citizen and your constituent, I strongly urge you to use your powers and direct the HHS to:
1. Fund biomedical research for ME in the amount of $250 million, which is commensurate with the disease’s severity and burden;
2. Adopt ME’s historical name, Myalgic Encephalomyelitis, and cease using Chronic Fatigue Syndrome; and
3. Endorse the well-defined, globally-accepted Canadian Consensus Criteria (CCC) for U.S. ME diagnosis and research.
By taking these three critical steps, you will eliminate the greatest obstacles to finding an ME cure and thereby significantly ease the enormous physical and economic burden of ME on millions of American patients and family members.
Your Congressional representatives
#MEAction hired someone I know for a few weeks. He worked on the Senate Finance Committee, was key in passing part of the Affordable Care Act, and he understands how to get things done on Capitol Hill. You can read about our efforts here:
http://news.sciencemag.org/biology/2015/08/lobbyists-seek-250-million-new-funds-chronic-fatigue-syndrome-research
The problem is, he is moving out of the country in September and so we are looking for someone else to carry on the cause.
We need to be more visible. I made bumper stickers for my car, front and back, and people ask me about this then I educate them about M.E. If anyone who still drives or has family that drives wants two stickers for their car, I will mail these to you until I run out of 50 I have at moment. For USA addresses only, just send me your address to [email protected] and I will mail this. This is especially useful if you live near DC, Bethesda, Atlanta, near big pharma or small pharma or near senators or representatives since we need federal support. Given that this might be a years or two or 20, we need to also self fund, and this could be much larger much quicker, for those who can donate. I have donated to End-MECFS.org = Openmedicinefoundation.org, since this funds R&D into biomarkers that are needed to diagnose this disease, track this disease, understand it, and assess treatements. Hope you can donate also the END-MECFS.org My son was college student, and now hospitalized from M.E. This is not the way to spend his life as a 21 year old who had great promise. Please help cure M.E. and donate.
Thank you. God bless!!
Hi Jen,
Could post the donation button to hire a lobbyist again. I can’t seem to find it within the MEACTION site, and I’d like to donate and maybe forward to family and friends.
Thanks!!!!
Hi Laura,
There’s a new yellow DONATE button on the side of the page now. Otherwise you can donate here: http://meaction.net/donate/
Thanks so much!
THIS IS A WONDERFUL PAGE. I wonder if it would be more fruitful for some of the organization like SMCI , MEAction, The Bateman Horne Center…to work together on planning certain asks for the government. Each group could set aside money and use the same lobby firm.
Thanks
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