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|
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.