Earlier this week, Jen Brea, Terri Wilder, Carol Head, Jennie Spotila, and Mary Dimmock met with Dr. Karen DeSalvo, acting assistant secretary for health. The purpose of the August 1 meeting was to impress upon Dr. DeSalvo how woefully inadequate the response to this disease from the U.S. Department of Health and Human Services (HHS) has been—that it is still too slow and too little—and to call on HHS to dramatically step up its commitment to ME.
Also participating in the meeting from HHS were Andrea Harris, Dr. DeSalvo’s chief of staff, and Dr. Nancy Lee, deputy assistant secretary of health, from the Office on Women’s Health.
The meeting with Dr. DeSalvo, which lasted a full hour, was positive and constructive. Dr. DeSalvo was very engaged and well prepared, leaving those participating with a sense of being heard.
The discussion focused on the need for a fundamental change and some options to achieve that change, such as a community/agency task force. We discussed the many reasons why such a fundamental change is needed: the level of debility of ME patients and the number of patients affected; the long history of neglect and stigma of the disease; the definitional challenges; the lack of research and researcher funding, which has had a chilling effect on researchers, academic centers, and pharmaceutical companies; the inaccessible and often inappropriate medical care and disbelief of doctors; and HHS’s failure to meaningfully engage the community or follow up on the recommendations of its own advisory committee, the CFSAC. As Dr. DeSalvo had seen in her experience in New Orleans after Katrina, these factors have left ME patients with a sense of being left for dead by all those who should be helping.
Dr. De Salvo asked a number of insightful questions about these issues and also asked about opportunities with efforts like the Precision Medicine Initiative. The other important topic that was discussed was the critical need to include ME in the transition plan for the next administration to ensure that current efforts do not stall.
Dr. DeSalvo agreed to reach out to the Precision Medicine Initiative and also to her counterparts at the Veteran’s Administration and the Department of Defense to identify additional opportunities. She has agreed to meet again in October. In the meantime, we will follow up with the Dr. DeSalvo’s office with specific requests to get additional information and to follow up on suggestions made in the meeting. Examples include a request to NIH on its funding commitment by institute for the next three years and a summary of HHS’s current and planned initiatives for this disease.
Carol Head of Solve ME/CFS Initiative said, “I was thrilled to be included in such a high-level meeting, and I look forward to future collaboration between the ME/CFS community and HHS.”August 5, 2016