Last month, I wrote about CDC wanting to charge me over $200 for documents I had requested under the Freedom of Information Act. I was looking for information on how much CDC had spent on the Institute of Medicine (now National Academy of Medicine) contract to devise new diagnostic criteria for ME/CFS.
As I wrote then, I did not have the resources to invest in getting the documents from CDC. However, after I wrote my post, the Solve ME/CFS Initiative offered to cover the costs of obtaining the documents from CDC. Thanks to SMCI, I can now report the results.
CDC identified 760 pages of documents responsive to my request. They released 201 pages to me, with very few redactions. The other 559 pages were sent to the main HHS FOIA office for their review prior to release. When this has happened in my previous requests, it usually indicates that the ownership or authorship of the documents resides at HHS.
The documents I received to date reveal that Dr. Nancy Lee (then from the Office of Women’s Health, and Designated Federal Officer of the CFS Advisory Committee) had originally asked CDC to issue the IOM contract under its standing contract with the Institute. In an email from August 14, 2013, she said, “”If CDC can get this thru for us, we owe you big!”
Not everyone at CDC was happy about it though. Dr. Steve Monroe, who at the time was deputy director of the National Center for Emerging and Zoonotic Infectious Diseases at CDC, wrote to other colleagues in leadership at the Center on August 14th. Explaining the proposed contracting arrangement, Dr. Monroe said, “Bottom line: we didn’t volunteer to play this role. . . . are ‘we’ willing to use our time/energy/chits to push this through at the 11th hour? . . . it would be nice if program could get something for their efforts.”
Through the month of August, there were many emails among CDC employees as they worked through the red tape to issue the contract. There are several places in those emails that reference “the Secretary,” such as, “the Secretary is requesting this study.” That suggests the possibility that the decision to commission the IOM study came from the very top – Secretary Sebelius.
CDC employees pushed the contract through their system, obtaining approvals from a variety of offices. But on September 3rd, Caira Woods from the Office of Women’s Health notified CDC that the IOM contract would be accomplished another way, and CDC’s help was no longer needed.
This chain of events is a little odd when viewed in the full context of the IOM contract controversy. The Office of the Assistant Secretary issued a notice of intent to award a sole source contract to IOM for the diagnostic criteria project on August 27th while CDC was still processing the request internally. Advocates found the notice, and it ignited a massive effort to protest the contract because it was being done without our knowledge or input. Woods called CDC to cancel that effort on September 3rd, but then on September 4th, the solicitation for the sole source contract was also withdrawn.
By September 17th, we knew that the IOM contract was going forward despite our mobilization against it. On September 23rd, the Office of Women’s Health announced that the contract had been signed. When I obtained the Statement of Work on September 30th, it became clear that OASH had turned to NIH to issue the contract through its umbrella arrangement with IOM. How and why that decision was made is still unclear to me. We may never get the documents that explain what really went on behind the scenes.
I started on this line of inquiry back in March 2014 with a very simple question: who paid for the IOM study? The Frequently Asked Questions document published by CFSAC stated that “almost all the agencies” contributed to the study. Through a number of FOIA requests, I’ve assembled the following totals:
| Agency for Healthcare Research and Quality | $100,000 |
| Centers for Disease Control | $150,000 |
| Center for Medicare and Medicaid Services | $0 |
| Food and Drug Administration | $150,000 |
| Human Resources and Services Administration | $0 |
| National Institutes of Health | $100,000 |
| Social Security Administration | $50,000 |
| TOTAL: | $550,000 |
The IOM contract totaled $1 million, so I assume that the remaining $450,000 was covered by the Office of the Assistant Secretary, but I do not yet have any documentation to prove that. But if OASH was not the source of that $450,000, then who was?
There is one other mystery: what is in the 559 pages that CDC referred to the main HHS FOIA office for review prior to release?
My thanks to Carol Head and SMCI for making it possible for me to obtain these documents from CDC.
Thank you for you great perserverance to obtain & report on this for those of us who would really have no understanding of what is taking so long for any true progress in Medical Proficiency regarding our Afflictions. I know these past 3 years have not been easy for you. I appreciate all that you report to us and the time & effort you invest!
I’m amazed that you have put so much effort into this, and dismayed that the involved agencies make it so hard for you. It’s not as if they got multiple requests for this information every day and it was overwhelming their administrative capabilities.
It makes me angry, always, to know how much money was allocated and then diverted. We should be well by now – and no one is acocuntable. No one is being made to eat their disbelief that we’re actually sick, and that they’ve made us feel like garbage all these years. Garbage and beggars asking for a handout for being lazy.
When I look back (something I don’t often do because it hurts so much), I see not just my career destroyed, and my family basically deprived of a functioning parent, but the same in the lives of countless other.
Keep their feet to the fire, and thanks to the Solve ME/CFS Initiative for stepping up. YOUR contribution is beyond payment.
You go, girl! Keep up the great work.
Great work, Jennie, and thank you so much, as always, for your effort and your professionalism. I have always suspected, but it has never been confirmed, that the push to get the IOM contract awarded iin September 2013 was a desire to get the money to pay for the contract “obligated” before the end of the fiscal year, Sept. 30. This is because under federal budgeting rules IF appropriated funds are not obligated to an authorized expenditure by the end of the FY, they revert from the agency back to the U.S. Treasury — that is, they are forever lost to the agency. This happens every year at the State Department where I have worked my whole career — appropriated money is obligated and spent on the high priority programs (usually existing) and projects first. If it is not all spent, there is a mad scramble in September to spend it on lower priority stuff and new stuff that has been delayed during the year — new equipment, new software, travel that has been put off, etc. But if it is not “obligated” or spent on an authorized expenditure by midnight September 30, poof, it disappears from the agency’s budget and goes back to the Treasury.
As a federal employee, this was the only scenario that made sense to me as this contract award played out in Aug-Sept 2013. But I’ve never had any proof. It will be interesting to see what the remaining 559 documents reveal. And speaking as an official who has personally reviewed FOIA requests, you are correct that every document has to be reviewed by the originating agency, so this is why the CDC would have to transfer them to another agency like HHS if CDC is not the originator or “owner” of the document.
Finally, I must take issue with the comment that FOIA reviews are not cumbersome administratively. Trust me, they are VERY cumbersome, and there is an enormous amount of law and guidance from the Dept. of Justice on what can and cannot be released. Frankly, I am amazed, and thrilled, that you have received at least this tranch so quickly. Average review time at the State Department is nearly 2 years now, due to our enormous request load and lack of human resources to review the thousands of requests. Just a different perspective.
Diane, thank you for your perspective. Just want to clarify a couple things.
I filed this FOIA request in March 2014, so it took more than three years for CDC to ask me for the $200+ for the documents. Once I agreed to the charge, the documents were released in about two days, so they clearly already had the documents compiled.
I don’t think there has ever been ANY doubt that the fiscal year deadline was the reason for the push in August and September 2013. I’ve seen this confirmed in emails obtained prior to this. The real question is why, when they started working on the IOM idea in FEBRUARY 2013, they didn’t involve the voting CFSAC members or the public earlier on.
Finally, I have tried in many cases to request information outside the FOIA process. But most of the time, federal employees have refused to provide information. That leaves no alternative but to use FOIA. I understand that this means lots of regulations have to be followed, but it is the only tool the public has to force transparency.
Once again, hearty thanks for your unflagging and unstoppable investigating of all things ME/CFS-government related, Jennie. We would know so much less without your work.
I am curious – how much, over the years, have you been charged for FOIA requests, and by which agencies?
This is the first time I have ever been charged, Billie.
Small, small, small.