#MillionsMissing US Protesters to Meet With DeSalvo at HHS

A meeting with Karen B. DeSalvo, the Acting Assistant Secretary for Health at the US Health and Human Services (HHS) and the National Coordinator for Health Information Technology, will be held this August.  The meeting was arranged in direct response to a request made around the May 2016 #MillionsMissing protests.
In May 2016, #MillionsMissing protests were held outside of HHS regional offices in Washington D.C., Atlanta, Boston, Dallas, San Francisco, and Seattle.  #MillionsMissing asked to meet with Secretary Burwell; HHS committed to scheduling a meeting but was unable to schedule one at that time. That meeting is now set for August 1st.
Editor’s note: The focus of the meeting will be section four of the #MillionsMissing protest demands. We will not be discussing detailed policy objectives at this phase. Our goal is to impress upon HHS the seriousness of the disease, how woefully inadequate the government’s response has been, and that HHS must take leadership at the highest levels and step up its commitments to our community. Further, we look forward to engaging in a community-wide discussion of the protest demands in advance of “Round Two” of #MillionsMissing.
The #MillionsMissing representatives will include Jennifer Brea and Terri Wilder of #MEAction, Mary Dimmock, Jennie Spotila, and Carol Head of the The Solve ME/CFS Initiative (SCMI).  Soon after the meeting, #MEAction will issue a report about the meeting’s results and potential next steps.
The Office of the Assistant Secretary for Health, which Dr. DeSalvo directs, oversees 12 public health offices, including the Office of the Surgeon General and the U.S. Public Health Service Commissioned Corps, 10 regional health offices, and 10 Presidential and Secretarial advisory committees. The office is charged with “leadership in developing policy recommendations as they pertain to public health issues that cut across HHS agencies and operating divisions.”
DeSalvo herself has a varied background, with experience in medicine, policy, and education; she worked as a physician focusing on underserved populations, and served as Health Commissioner for New Orleans, where she played a key role in helping that city rebuild its health systems after Katrina.  She also has been employed as a professor of medicine and as Vice Dean for Community Affairs and Health Policy at Tulane University.
Thank you to EVERYONE who turned out and tweeted and posted online for #MillionsMissing – you helped make this possible!


10 thoughts on “#MillionsMissing US Protesters to Meet With DeSalvo at HHS”

  1. This is very exciting news! Big gratitude to everyone who made this meeting happen, and to everyone who will be attending.

  2. Excellent! Thank you for all your hard work.
    I want to voice my strong misgivings that 2 of the 5 representatives are closely connected to SMCI/CAA- SMCI Carol Head, and long-time former board member Jennie Spotila. SMCI/CAA has a long track record as an astro-turf organization, practically a front for CDC and it’s victimization of ME patients. When the patient uproar against SMCI/CAA reached operatic pitch, the organization then said, “don’t criticize us about our advocacy and/or lack of it, we are no longer an advocacy org at all and in keeping with that we are changing our name to SMCI.” Then SMCI pulled a fast one and endorsed the Institute of Medicine process when every other patient org and individual advocate, condemned it.
    On the other hand, the organization seems to have made significant strides under Carol Head, however I am still very concerned given that the stab-in-the-back endorsement of the IoM process under Ms. Head.
    Is it true that MEAdvocacy was not invited to have a seat at the table? If so, that makes me extremely concerned. I’d appreciate the favor of a reply.

    1. Justin, I appreciate your kind words that our organization has made significant strides under my leadership. I have been in the role for two and a half years, and, indeed much work has been done. (As an aside, I am quite surprised that you associate Jennie Spotila with SMCI. While I have enormous respect for her and occasionally collaborate, she has had zero role in our organization for many, many years. She is certainly not SMCI affiliated now.)
      It’s not clear to me what “astro-truf” means in this context; however I can state that we have been vocal critics of the federal agencies including CDC. I do not say this with pride as our goal is to work with them, at NIH, CDC, HHS and CFSAC, so that their activities address the righteous needs of our long-neglected disease. I would refer you specifically to the “report card” we issued following the August CFSAC meeting, in which we publicly gave those agencies dismal grades regarding their demonstrated commitment to ME/CFS.
      Regarding the IOM, our organization supported it in 2013, prior to my joining. And I am proud that was so. The IOM report, while imperfect, provides critical validation for our disease and is leverage for much work that is now done by many advocates.
      And, last, our organization agreed that while we are primarily a research organization (believing that the best way to serve patients is by finding treatments and cures), we recognize that treatments and cures will almost certainly derive from massively expanded federal funding. So, we have taken up, along with MEAction and other highly capable advocates, the challenging work of advocacy for additional federal research dollars, proper education for medical professionals and other key issues which ONLY the federal government can accomplish. We would be remiss if we did not take up advocacy.
      I welcome your thoughts and comments. There is so much work before all of us.

    2. Hi Justin,
      It is definitely true that we should have engaged the community in some way in advance of the meeting, perhaps building on the NIH RFI model (http://meaction.net/2016/06/18/take-the-meaction-nih-research-priorities-survey/) or the model for soliciting feedback for the #MillionsMissing demands (http://bit.ly/2aCS8SL). These are all very time-intensive mechanisms as we usually receive hundreds to thousands of replies. I think we need to move forward with the process of constituting #MEAction USA and defining who we are and how we make decisions. All this would be handled better if we were having regular, biweekly meetings and had an elected steering committee in place.
      I look forward to continuing this discussion at the next #MEAction USA meeting, which will probably be on Sunday, August 27th at 4pm ET, and every other Sunday thereafter.
      By way of background: this meeting was publicly requested by #MEAction in conjunction with the #MillionsMissing protests. Myself, Terri, and Mary were all protest steering committee members. Jennie contributed technical advice. Carol, in addition to heading an organization that has been doing significant congressional and NIH work in 2016, spoke at the protest in San Francisco. We could definitely have filled these five slots several times over with talented, experienced advocates and hope that through #MEAction USA, we can have a more open process for coordinating #MEAction-initiated meetings in future. This is I hope the first of many meetings.
      In the meantime, I am THRILLED the protests helped us kick this up to the Secretary’s Office. We need high-level leadership to take responsibility for mobilizing our government to solve this crisis. I look forward to reporting back on Tuesday if not sooner!

  3. I appreciate the IOM Report although I doubt HHS will ever have the backbone to implement any of it it did provide validation to a disease that has been ignored since 1934. 34, not 84.
    I do believe the SEID criteria would work and then when filtering of say FUKUDA with PEM or CCC is applied better diagnosis will take place. You can’t expect any doctor or insurance company to start the diagnostic process of CCC without some sort of broad diagnostic proof and symptoms to proceed with further testing. Remember, CCC and ICC were developed by CANADA (although US researchers/doctors involved it is still a criteria best for Canada) that is not dependent on insurance companies approving the process but has socialized medicine that do allow the doctors to proceed with testing. Let’s stop pretending CCC or ICC will ever be approved for a Primary or other first level doctor to use to start diagnostic process and you don’t get to see a Neurologist or Rheumatologist very often without a precert (and if you do the doctor does not give a crap about your symptoms without some sort of first level justification) and just what is the Primary going to tell the insurance company without a first level diagnose of say SEID with further symptoms to be looked into. Even if the US went to Socialized Medicine and its process of care it will take YEARS to implement and a decade for the healthcare field to figure it all out with patients again left to fend for themselves.
    PUSH FOR THIS – I personally think HHS should be pushed into implementing SEID for a Primary, Allergist, Rheumatologist or ANY doctor to Dx with and then can have a reason to send the patient for testing or to another specialist if necessary. Assigning Neurology or Rheumatology SOME PROFESSION with the responsibility of overseeing this disease would be enormously helpful and giving them CCC to further Dx with would work just fine.
    The beauty of SEID is right in the name IN THE NAME the doctor would know not to view exercise as a treatment saving the patients from great harm.

  4. *I meant CCC developed by Canada and US Researchers/Clinicians and ICC developed by several country’s Researchers/Clinicians.
    Neither CCC or ICC is acceptable for Dx on the “front lines” of Primaries, Family Doctors, and specialists or alternative doctors used by US patients such as Allergists, Nutritionists, Chiropractors, etc.
    Diagnosis should be in this order: SEID> A Filter like DePaul?> CCC
    We really don’t need ICC and I doubt the US will EVER adopt it so just give it up.

  5. Many exerts, advocates and patients are advocating against the IOM criteria. As Leoanard Jason and Frank Twisk’s works have capably pointed out, the IOM criteria are more diluted than the Fukuda. Jason’s figures show that the IOM prevalence would triple those of the Fukuda!
    The IOM criteria are not ME criteria and to recommend them for ME patients is dangerous and irresponsible.

    1. If SEID criteria had existed in 1979 I would have been Dx’d that year. Instead it took me until 2003.
      I have ME. I have ME/CFS. I have CFS and I am diagnosed with CFS. SEID isn’t dangerous and is the beginning of a process doctors use in diagnosing any disease. You don’t STOP with SEID, it is only the beginning. You then apply the DePaul filter and then CCC.
      You run tests during the 6 months prior to Dx with SEID such as MRI, sleep study or tilt table and blood tests like Thyroid panels, etc. During DePaul questionnaire, you begin to further filter (like any Neurologist uses a filter to see what the symptoms of his patient are or a Rheumatologist with pain scales and marking where and what type pain you have on graphics of a human or a Primary that uses all those obnoxious pages of paperwork to fill out to see what general symptoms a patient has) and that steers as to whether CCC is used to diagnose.
      Of course SEID is not ME critieria, it is the broad sweep of symptoms that go through a filter (DePaul) and then Dx with CCC if the patient has ME/CFS.

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