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!
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the