Response from HHS: We’re Doing Everything Right, So You Have No Reason To Complain

[slayadragon]

Here is a new Paradigm Change blog post.

>On December 14, 2013, I sent a letter to U.S. Health and Human Services Secretary Kathleen Sebelius, bringing to her attention problems associated with the CFSAC webinar held several days earlier.

>Below is a letter in response, date stamped January 10, 2014, and signed by Assistant Secretary for Health Howard K. Koh.

http://paradigmchange.me/wp/?p=364

 

[justinreilly]

Lisa, thanks for following up on this. They've given up any pretense of acting in good faith. Unfun to see, but good to have for the record.

 

[slayadragon]

I used to think that Kathleen Sebelius was really terrific, when she was governor of Kansas. And I feel like I have a slight connection to her, since I attended the same Catholic school in Cincinnati that she did and have some mutual acquaintances. So the way that HHS has handled this whole affair, from start to finish, has been a continual disappointment to me. Regardless of whether their intentions are to do harm to this disease (and I honestly don't know the answer to that at this point), their PR skills are just abysmal. Supposedly they are in the process of hiring a PR agency to help them, so it will be interesting to see if things change.

Lisa

 

[Andrew]

How did you send this? Paper, email, other???

 

[Ren]

He forgot to say, "Have a nice day" at the end.

 

[alex3619]

How did you send this? Paper, email, other???

Reply appears to be by email, so I am guessing it was sent by email.

 

[slayadragon]

Yes, just email.

 

[Wally]

I used to think that Kathleen Sebelius was really terrific, when she was governor of Kansas. And I feel like I have a slight connection to her, since I attended the same Catholic school in Cincinnati that she did and have some mutual acquaintances. So the way that HHS has handled this whole affair, from start to finish, has been a continual disappointment to me. Regardless of whether their intentions are to do harm to this disease (and I honestly don't know the answer to that at this point), their PR skills are just abysmal. Supposedly they are in the process of hiring a PR agency to help them, so it will be interesting to see if things change.

Lisa

Lisa,

At this point I don't know if a PR firm can help what appears to be a lack of leadership at the HHS. In my past experience in government, the person at the top can unfortunately sometimes be out of the loop in what is going on below them. However, the buck stops at their desk. I think that there may be some middle management at the HHS who are making some seriously poor decisions and there is no one directly above them (the deputy director comes to mind) who is managing the situation in a manner that is both transparent and responsive to the constituents/citizens who the individuals at HHS ultimately work for.

I think it may be time for the HHS to receive some outside training on the role of government in the lives of its citizens and the fiduciary responsibility that one takes on when accepting a position of power working within the government. I will volunteer for this training job and I will provide my services for free.

I also think that it is important to point out to both the ME/CFS patient community, as well as those who are the subject of critiques about their professional behavior and skills in handling matters related to the ME/CFS that such critiques/criticism are part of what comes with having the privilege of working for your government (i.e. citizens of the United States of America). Some of the criticism can seem somewhat stinging, but that it just how the system works when you have lots of people who are affected by how you perform your job. As long as the criticism is constructive and does not cross the line into a personal threat then you need to put on your big boy/big girl pants and realize this is just one part of the job. If they don't like it, they can exit the door at anytime and I assure you there will be many people waiting to take their place who are thrilled to be given such an opportunity.

Wally (Susan Kreutzer former government attorney for the State of Ca. Dept. of Insurance)

Wally

 

[slayadragon]

Thanks for your comments and your work, Wally/Susan!

 

[Andrew]

"Any disease definitions, recommendations, and/or reports that result from that process will be based on the findings of an independent committee of experts and not the government"

This statement is not true. First, the HHS decided to exclude all patient advocates from the review process. Giving at least one day to speak from the audience is not the same as participating in the actual development. Also, they specified that it is to be a literature review. They didn't ask IOM what is the best way to do this, they told them. And, they didn't provide for field testing to see if it adequately selects patients. And, they will be having ongoing meetings with IOM about how to conduct evidence based work.

Also, it is not a committee of experts. This is a standard lie that the HHS uses. For example, Fukuda was an expert in leprosy, not ME/CFS. Most of the participants of that project had zero experience with ME/CFS. Yet, on the CDC website they say it was the product of experts.

Lies, lies, and more lies.