As I mentioned in this week’s RFA Ticker, I participated in a meeting with the Assistant Secretary for Health Dr. Karen DeSalvo. You can read the meeting summary on MEAction, and I’ve reprinted the full text below.
From a personal stand point, this was a grueling project and a very long week. I am crashed, but not alone. I carried each of the #MillionsMissing in my heart to the meeting, and I hope the work will yield results for all of us.
I would like to add that working with the team on this meeting has been a satisfying, if demanding, experience. The five of us worked really well together, and I think we did a fantastic job in the meeting. We had the undivided attention of the Assistant Secretary for a full hour, and we made the most of it. I am deeply grateful for the excellent work of the entire team, over many hours and lengthy travel (on our own dime). Now we turn our attention forward, to the next steps.
As reported earlier this week, Jen Brea, Terri Wilder, Carol Head, Jennie Spotila, and Mary Dimmock met with Dr. Karen DeSalvo, Acting Assistant Secretary for Health on August 1. The purpose of the meeting was to impress upon Dr. DeSalvo how woefully inadequate HHS’s response to this disease has been – that it is still too slow and too little – and to call on Health and Human Services to dramatically step up its commitment to ME.
Also participating in the meeting from Health and Human Services were Andrea Harris, Dr. DeSalvo’s Chief of Staff; Ben Panico, Special Assistant to the Assistant Secretary of Health; Dr. Nancy Lee, Deputy Assistant Secretary of Health, Office of Women’s Health; and Gustavo Seinos, Public Health Advisor, Office of 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.
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.
As a first meeting, the goal was to impress upon Secretary DeSalvo the seriousness of the disease and highlight how the government’s efforts to date have failed to address the epidemic. #MEAction is engaging the community in a conversation around the May 25th #MillionsMissing protest demands in an effort to ensure that our engagement with the government is informed by the community’s diverse range of concerns and that the demands reflect the majority views of all patients who chose to participate in this process. This will help inform future discussions.
Thank you for doing this – all of you. It is an incredible gift – reminds me of the story of the widow’s mite in the Bible – Jesus praised the poor widow from whom a tiny contribution meant so much, because it was all she had.
You have given us, with no guarantee of success, the huge gift of your time, effort, and commitment.
So glad it ALSO went well. Hope it is worth your sacrifice.
Well done. Keep up the good work. It’s great to see a dialogue happening.
Brilliant job, well done! 🙂 <3
You five are a force to reckon with. I can’t think of any other group of five who could better persuade sincerely interested HHS staff of the multiple and desperate needs of this patient community. Thank you all for all your efforts.
Was there any discussion about treatments (and lack thereof)?
Yes.
Good work, Jennie! And a physical sacrifice, too! I’m so proud of you!
Thank you for your effort and good job!!
Elena Sechesisi
Thanks so much for doing this. Your effort is appreciated by the ME community. Take time to rest. I pray we can go forward with results. Looking forward to hearing more and hoping October brings us good news and more support/research dollars.
The ME Fierce Five!! Awesome Job!!
I can only echo the articulate thanks of those who have amounted already. Deep gratitude to you–and wishing you deep sleep, and restorative quiet days.
Happy to see a discussion going . Good work
Meghan
Brilliant and awesome! Thank you and the other four excellent spokespeople for ME/CFS sufferers.
Were specific research findings discussed, as those on brain changes, from Stanford, on microbiomes, from Cornell and Columbia, on changes in genetic expression, from Utah and elsewhere?
Were the IOM and its findings and important report specifically discussed? I get aggravated at the lack of relevance this critical work has been to the NIH. So, am wondering if it is being addressed.
Thanks again to all of you. I hope the government listened and is prompted to act.
Many thanks to the entire team. I have such deep respect for all of you. I hope this brings a desperately needed outcome.
Thank you so much
Jennie, as a 78 year old mother of a home-bound and mostly bed-bound ME sufferer, I thank you and your colleagues for all the hard work and the sacrifices. I see at close hand what this disease can do. Not only the physical suffering, but also the extreme change in the whole spectrum of the life of a patient. Wishing you strength and peace.
I get that this was a get to know meeting. Everybody in every meeting is NIH is always very concerned and nice. The big question, of course, is what actions will they take?
That brings up the question what is Sec DeSalvo in a position to do for the ME/CFS Community? What deliverables could she potentially bring?
She is also the National Coordinator for Health Information Technology which could fit into the idea of producing a network of ME/CFS consortiums. That might be a good avenue to pursue.
Did she say what kind of opportunities she might be looking for with regards the Precision Medicine Institute (folding ME/CFS into studies? Getting ME/CFS patients into the database?) and why she targeted that Institute?
I’m a bit surprised that she didn’t know about the NIH was doing on ME/CFS but oh well – she will by the next time.
Did she request the meeting?
You clearly made a terrific team, and we can’t thank you all enough, whatever the outcome–it will not be your fault if it does not fully satisfy. And I hope you recover quickly from what must have been an exhausting time, mentally as well as physically.
“we will follow up with the Dr. DeSalvo’s office with specific requests to get additional information”
I hope those requests will include a demand to know exactly who is controlling the policy of non-research. Until those persons are identified and pressured (or prosecuted) the policy will not change. Polices don’t just decide themselves, just like war doesn’t “break out” – someone decides to start shooting.
Who decided that letting patients suffer and die in isolation will be the policy?