#MillionsMissing Activists Meet with US Assistant Secretary of Health DeSalvo

DeSalvo-330x334As 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. 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.
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.


10 thoughts on “#MillionsMissing Activists Meet with US Assistant Secretary of Health DeSalvo”

  1. Eileen M. Kelly, Ph.D.

    There are a lot of cancer patients who are “cured” of their cancer disease but suffer the extreme debilitation of ME/CFS triggered by their cancer treatment. The medical oncology community, for the most part, dismiss these patients and offer very little in terms of treatment. The cancer patient and advocate community is realizing the importance of “survivor” issues and trying to raise the profile and demand treatment and research of these complications that have been termed “collateral damage”.
    I believe that the National Cancer Institute and the American Cancer Society may be interested in collaborating with an HHS ME/CFS/SEID steering committee.
    Feel free to contact me if I can be of further assistance. Before I “went missing”, I was a pharmaceutical executive specializing in oncology.

    1. Ellen, you are a breath of fresh air! I was getting discouraged because I was starting to feel that most of us were asleep. Excellent insight and suggestions; love the “out of the box” thinking!!!

  2. Thank for so much for your efforts!! Regarding the Precision Medicine Initiative, I really like their mission statement!!
    “Mission statement:
    To enable a new era of medicine through research, technology, and policies that empower patients, researchers, and providers to work together toward development of individualized care.”
    Our community is long overdue to embrace the concept of ‘working together’. We seem to be working in silo’s. I hope things change soon, because ‘working together’ IS the way to solve ME.

  3. Kathryn Mullins

    Thank you so much for giving of yourself to put these most important points regarding ME in the right hands. I don’t have the energy or cognitive function so I’m not able to do as much as advocating that I would like. I am helping DAVID with the San Francisco protest on September 27. Thank you again for advocating about ME for all of us who can’t.

  4. Eileen – I think you bring up an important connection. An MD friend of mine said “CFS won’t kill you but it will make you wish you were dead.” While i’m not totally convinced it won’t kill us, at least for me, there have been times when I’ve been ready to throw in the towel. It must be shocking to have survived cancer to then be handed a fraction of your former life.
    I have been thinking that because ME/CFS is such an orphan situation that part of our marketing (for lack of better term at this moment) strategy could include piggybacking on other high profile issues/situations from the ridiculous to the sublime; such as “You’ve just won the Superbowl, what’re you going to do now? I’m going to Disneyland but first i’m going to help get funding for ME.”
    Thank you –
    Shelley Reed

  5. Post cancer fatigue is very real and like ME/CFS is patients are stigmatised and disbelieved by the medical profession.
    Given the commonalities it does seem that work on the differences and similarities could be of benefit to both parties.
    People with ME/CFS are often totally laid flat by what is wrong with our bodies be it out innate immune system stress receptors or whatever.
    Post cancer fatigue doesn’t appear to hit as hard.
    People with ME/CFS may hold the key to solving disease in which exertion causes a raft of symptoms to exacerbate and debilitate.

  6. Sadly we have the same lack of funding situation in the UK. Doctors are not trained adequately – not their fault, They only focus on pharmaceuticals, which make the drug companies richer and the sick sicker. After 30 years of M.E. I can only control the bad months by meditation, chanting, mindfulness and positive thinking, with a strict diet, and what I can afford by way of supplements and I/V’s, it’s the only way. We have to look to the future of functional medicine, alternative treatment and preventative medicine, and make people aware that we have a serious immune system deficit, we are not shirking.

  7. Lizbeth Glickman

    First, thank you so very much, #MEAction, for all your efforts. I may not live until October. I have been ill since for over 23 years. I know exactly what caused the illness in my case. And after moving with great hope back to the Boston area, my medical “care” has been nothing but abominable. I have been abandoned by friends and family over three years ago. I cannot work. I cannot pay health insurance anymore. I am of the generation of women who were paid garbage wages despite qualifications for decades so that my tiny social security check barely covers rent. PERIOD. The United States government should be enormously ashamed of their total failure to do what is their responsibility first–American citizens. I am most sorry to have paid taxes for over 45 years. I need help NOW.

  8. Thanks. It’s great that ME/CFS is getting a listening at the NIH but I’m a bit surprised that she didn’t have this with her: a summary of HHS’s current and planned initiatives for this disease. Is she asking you guys to get that?
    Its a great idea to get Institute’s commitment to funding over the next three years.
    One question is what does De Salvo have the ability to do for ME/CFS. Is she in the type of leadership role where she can illicit change?

  9. I don’t know if you’ve thought about it or not, but you might consider video taping your meetings/interviews. I don’t know if that would make it easier for you or not. I also thought it would help to ensure you have an accurate record of what was said in case anyone recounts their statements later or just has a difficult time remembering something for sure.
    I believe that the reason the medical community gives the impression that they don’t believe people suffer from particular symptoms and ailments is more a matter of they just don’t know how to treat the issues or know what they can do to help but they are too arrogant to admit that they don’t know. The easiest thing to do is to turn their back. It’s essentially the same thing as when a physican comes to the end of their list of ideas on how to treat a patient or has exhausted their list of ideas for potential diagnoses and they will affix a general diagnosis to basically shut the door on the patient’s complaint and not have to deal with the issue anymore while meanwhile the patient still has to live with the symptoms and condition.
    Lizbeth Glickman,
    I’m terribly sorry to hear about he predicament you are in. I can relate on many levels and it’s not something ANYBODY should have to go through. What’s worse is that people in our condition don’t have the energy to go searching for the dire help we need. Unfortunately, it’s not as easy to find the right help. There ARE different social services which can help provide for you.
    Contact your local Social Security office and find the contact information for the local Senior Services center. You don’t have to be a senior yourself for them to help you find the resources you need. Just keep calling every day until they have managed to fill in all of the gaps to make sure that you have the necessities taken care of. Believe me, I understand how exhausting it is just to make a phone call.
    Even if your friends and family are too blind to understand how much help you need it doesn’t mean that there aren’t people in the world who care about you. I care and I know others do too.

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