Tale of Two Letters

Advocating for an adequate federal response to CFS usually feels like banging your head against a brick wall. Every once in awhile, you knock out a brick but it feels like so much more because you’ve been banging away for so long. Two recent letters from the US government regarding CFS have given me the it’s-just-a-brick feeling.

Assistant Secretary Koh to the CFSAC

On August 3, Assistant Secretary Howard Koh responded in writing (pdf) to the CFSAC recommendations from its November 2011 meeting. At first, I was appalled by the nine month response time. But then I realized that this is the most substantive written response that the CFSAC has ever received to its recommendations from the Department of Health and Human Services. I applaud Dr. Koh for responding to the CFSAC in a manner similar to his responses to other federal advisory committees, such as the Advisory Committee on Blood Safety and Availability.

The meat of the response is the three page attachment that addresses each of the November 2011 recommendations in turn. There is very little new information here. The CFSAC recommended an RFA for clinical trials, but the letter refers only to the current program announcements and repeats what we already know about the Trans-NIH Working Group. The CFSAC recommended real or virtual Centers of Excellence be formed through an HHS interagency working group, but the letter describes what we already know about the Ad Hoc Working Group. The CFSAC recommended that CFS be classified as a Disease of the Nervous System in the ICD-10-CM, but the letter only summarizes the process of proposals being considered by the Coordination and Maintenance Committee.

The letter does offer a little new information in response to the CFSAC recommendation that the process of transmitting recommendations to the Secretary be clarified. The letter explains that CFSAC recommendations go to the Assistant Secretary for Health (per the charter), who then forwards them to the Secretary and the relevant Operating/Staff divisions. The Assistant Secretary sends the CFSAC a letter acknowledging receipt of the recommendations, and may include any relevant updates. Finally, all information about the recommendations is provided to the Committee’s Designated Federal Officer who then shares that information with the CFSAC. Note that this process does not guarantee a response to the CFSAC from the Secretary, nor does it promise any kind of response to each recommendation. It is entirely possible that a recommendation could go from the Assistant Secretary to the relevant division, and for no information to come from that division to the DFO. This is, in fact, what seems to happen with some frequency.

This letter represents a single brick knocked out of the wall. It’s the most detailed and substantive response the CFSAC has ever received from an Assistant Secretary, but there is very little new information included and no progress to report on the recommendations themselves.

President Barack Obama to Courtney Miller

Now this letter has gotten the CFS community all stirred up! In April 2011, Courtney Miller and her husband, patient Robert Miller, asked President Obama at a town hall meeting what he could do to address the paucity of NIH research funding for the illness. The President promised to look into the matter with NIH. After a great deal of persistent follow up by the Millers, who deserve tremendous credit for their efforts, President Obama responded in writing (pdf).

There is no new information in the letter itself. The President summarizes the state of CFS funding at NIH (which we are well acquainted with), and mentions the State of the Knowledge meeting and the two current program announcements. The President also mentions the DHHS Ad Hoc Working Group that “is working to develop a Department-wide strategy to address the disease.”

But there is one very significant sentence at the end of the letter: “I have asked [Deputy Chief of Staff for Policy Nancy-Ann DeParle] to stay in touch with Dr. Collins at NIH and Dr. Koh at HHS about my interest in their efforts on CFS.” Courtney Miller also reports that according to Deputy Chief of Staff DeParle the President has asked NIH to “elevate the priority” of CFS.

Did the President promise more money? No. Accelerated progress at FDA? No. A national strategic plan crafted with stakeholder input? No. Resolution on the name and definition issues? No. While I understand the excitement this letter has caused among many patients, it is not a game changer. It’s not a solution.

BUT it is progress. When the President tells the Director of NIH to elevate the priority of CFS, that will have some impact. When a White House Deputy Chief of Staff periodically checks in with Assistant Secretary Koh about the President’s interest in their efforts on CFS, you can be pretty sure that Koh will want to have something to report. In my opinion, Presidential and Congressional attention is the only way we will see real change and progress on CFS. This is a step in that direction. (If you would like to thank the President, there is a suggested way to do so here.) It is also critical for the CFS community to recognize that if President Obama loses the election in November, we go back to square one. A new President and new Assistant Secretary will likely have little knowledge of CFS and we’ll have to start all over again.

These letters represent progress, but they are single bricks. If there is a brick wall between us and a cure for CFS, then these letters each represent one brick removed from the wall. In my opinion, the wall has barely been damaged. But this is how we’ll do it: brick by brick.