Posts Tagged 'advocacy'

NIH, here’s some of what we need from you

In answer to the recent NIH Request For Information (RFI), several advocates and organizations submitted the attached response. Response to NIH June 2016

The response covers essentials such as:

  • show us the money, (Quickly ramp up committed budget)
  • give us access to research by bringing down the walls, (Address NIH Institute process and policy barriers)
  • nothing about us without us, (Provide for meaningful engagement of experts and patients advocates)
  • do it right, (Establish rigorous research standards)

and

the need for speed. (Speed delivery of treatment)

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#Millions Missing

Millions of people are missing from everyday life because of Millions Missing from research and Millions Missing of appropriately educated healthcare professionals to care for patients

The #Millions Missing demonstration will take place on 25 May 2016 in select locations across the globe.

#MillionsMissing ME/CFS Protest Demands

  1. Increased Funding and Program Investments

Funding and program investments commensurate with the disease burden

  1. Clinical Trials

Clinical trials to secure medical treatments for ME/CFS

  1. Accurate Medical Education

Replacement of misinformation with accurate medical education and clinical guidelines

  1. A Serious Commitment

HHS leadership, oversight and a serious commitment to urgently address ME/CFS

#MEAction has posted the rationale for the demands.

NOTE –

There is an open community meeting hosted by MEAction on

Wed. May 11th, 2-3:30 pm EDT

to discuss the demands and

hear any questions or concerns you have about them.

More info and call sign-up here:

 https://my.meaction.net/events/millionsmissing-national-call

MEAction says “We are thinking of these demands as a living document. We plan that after the protests (May 25) it will evolve as we get input from the community. MEAction.net will set up a mechanism for receiving that community input. This task, and the evolution of the demands document, will happen after the protests, simply because we lack the capacity to do it while we are organizing the protests.”

MillionsMissing graphic 1

 

 

 

 

 

CFSAC – to be or not to be

ME community members were caught off guard when the proposed 2016 Senate appropriations bill zeroed out CDC funding for CFS research. Several advocates scrambled to address this and their efforts to be heard appear to have paid off.

But scrambling is not something ME advocates can, or should do. Health- and resource- wise we can’t afford to scramble because it damages our health. Strategic, coordinated and planned approaches would enable less intensive expenditure of resources and allow us to take a measured approach to concerns.

To avoid last minute scrambling, here are a few CFSAC-related things advocates might want to work on.

CFSAC VOTING MEMBERS

In 2016 the terms of 4 CFSAC voting members (Casillas, Collier, Corbin and Fletcher) will expire. FOUR (!) new members out of a total of 11 voting members, means that more than one-third of the committee members will be replaced. That’s a large portion of the voting membership.

The HHS vetting and approval process for advisory committee members is quite lengthy, which means that the request for nominations will probably appear soon. Typically there’s about a 30 day window from the published announcement to the submission deadline, so giving thought to this right away, allows time for recruiting highly qualified nominees and allows for the development and submission of nomination packets. (For reference, the most recent notice was September 2013. The process may be different this time.)

Required expertise (stipulated in the CFSAC charter)

Of the eleven members, seven shall be biomedical research scientists with demonstrated expertise in biomedical research applicable to ME/CFS; four shall be individuals with expertise in health care delivery, private health care services or insurers, or voluntary organizations concerned with the problems of individuals with ME/CFS.”

Of the CFSAC members whose terms end in 2016 –

Mary Ann Fletcher is a biomedical researcher,

Adrian Casillas and Lisa Corbin are healthcare professionals,

Rebecca Collier is a nurse associated with insurance (I believe).

Additional considerations

The CFSAC has a lot of work to do and the learning curve for advisory committee members is steep under the best of circumstances.

In order to best serve the community, all committee members should be highly qualified and knowledgeable individuals who are fully engaged with the work of the CFSAC.

Because of the steep learning curve and the important work that the CFSAC needs to do, ALL CFSAC nominees/members should be well versed in the science, history and politics surrounding this neuroimmune disease, so that from their first day on the committee they all work effectively.

Think about which category of charter-stipulated-expertise the nominees meet. (The categories are – biomedical research related to ME/cfs, expertise in healthcare, insurance, voluntary organizations serving people with ME/cfs.)

It might also be worth examining the current roster to see if there are additional gaps in charter-required expertise.

Which qualifications make for the most effective CFSAC members?

Before initiating the nomination process for anyone, remember to verify their willingness to serve. (In past years, nominees have had to submit letters stating their willingness to serve.)

We have no way of knowing which nominees HHS will appoint to the CFSAC, but ensuring that HHS receives nominations of numerous highly qualified individuals, increases the chances that voting members of the CFSAC will be appropriately qualified individuals who, from the start, can work diligently and effectively on matters related to ME.

CFSAC CHARTER

The CFSAC is supposed to be our venue for getting things on the public record.

The CFSAC charter is up for renewal every two years which means that in 2016 the CFSAC charter is up for renewal.

Renewal is not automatic/guaranteed, so it is worth devoting time to the who, what, when, why and where of charters and working towards getting it renewed.

Since ensuring renewal is likely to be a protracted process, it could be helpful for a team of people to share this work.

Additional considerations

Are there charter changes that would be beneficial?

Would it be appropriate to examine the charters of other HHS advisory committees to see if they include language/provisions that would strengthen the CFSAC charter?

Charter designation

Would it be more appropriate if the CFSAC were a Presidential, or statutorily mandated advisory committee as opposed to being a discretionary advisory committee?

If so, who will follow through to make it happen?

Using unified talking points when working on charter-related issues will help ensure that TPTB aren’t confused by differing messages.

ENGAGEMENT

CFSAC meetings take place (at most) twice a year. Is that sufficient to adequately address material from the working groups, other related concerns within HHS and SSA, etc.?

The current DFO has said she does not have sufficient time to act as DFO and do “her other job”. Will the new DFO be wholly devoted to ME matters?

Is the engagement model we have with the CFSAC and HHS satisfactory? Is the level of openness and transparency in communications and actions satisfactory?

Does HHS take this neuroimmune disease into consideration when developing strategies, policies and/or disseminating information?

Do we need someone at HHS (at a prominent level) who can provide continuity between meetings and outside of working group activities and who can ensure that ME concerns are taken into consideration across all HHS activities?

Would it be useful to have someone more engaged with the community and the activities of HHS to progress matters related to ME?

The IOM report used the model of the HIV Czar and recommended a Czar for this disease. Would this improve HHS’ level of engagement regarding this disease?

If the community is not satisfied with our current engagement model with the CFSAC and HHS, what changes would best serve us and how will we ensure that they come about?

May 12th is ME Awareness Day

We have endured more than 30 years of neglect, dreadful stigma, and woefully insufficient research funding for this horrid disabling disease.

One day for awareness doesn’t seem like enough to make enough of a difference in the current (inappropriate) status quo. We need a significant change!

I think we need a lengthy, aggressive awareness campaign as part of an intensive overall of policy regarding this disease.

Some thoughts on what an awareness campaign might entail are detailed here:

http://www.occupycfs.com/2015/05/05/awareness-reboot/

Release date for final P2P report

After delays and process problems, the release date for the final P2P report has been announced. ODP (Office of Disease Prevention) says the final report will be in print and posted on Tuesday June 16, 2015.

Important Notice: The ODP recently discovered that one set of public comments was not forwarded to the panel for consideration. Because the ODP is committed to ensuring that all public comments have been considered, we paused the publication process in order to give the panel time to consider the new information and determine if changes are needed before the release of the final report.

Status Update (April 16, 2015): The new publication date for the panel’s final report will be Tuesday, June 16, 2015, in print in the Annals of Internal Medicine and online on the ODP website. Thank you for your patience to allow for consideration of all public comments.”

https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs

The final NIH P2P report will be out on Tuesday 14 April 2015

ODP had originally indicated that the final report would be published a couple of weeks after the end of the public comment period (16 Jan 2015). The time frame now seems to be more like 12 weeks after the end of the public comment period.

(fwiw – there was a similar delay in publication of the final opioid P2P report. It was due out in October 2014 and was not published until Jan. 2015).

From the ODP (Office of Disease Prevention) website:

Draft Report

Download the Draft Report (PDF – 3.45 MB)

An unbiased, independent panel developed a draft report of the 2014 NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, which summarizes the workshop and identifies future research priorities. The public comment period is now closed. The final report will be available on the ODP website on Tuesday, April 14, 2015.”

https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs/workshop-resources#draftreport

A letter to the king of Norway from young Norwegians with ME

Letter to King Harald of Norway from Martin and 58 other young people with M.E.

ME mum’s confessions proudly presents an important letter to King Harald from Martin (17). The letter is also signed by 58 other children and youngsters with M.E. (Norwegian original)

A shortened version of the letter was published in the leading Norwegian newspaper aftenposten.no and was also in the printed paper. In the paper, this was an important contribution to the ongoing debate on M.E. We recommend reading the full version. Both the letter and the following quotes make a strong impression.

Dear King Harald,

I write to You because You are our King and have shown that you care about the weak in our society. I also know that you are concerned about children’s and young peoples’s situation in Norway. I write primarily on behalf of my brother and me, but also for many other children and young people suffering from the disease M.E. or myalgic encephalopathy. Having lived with this disease most of my life, I increasingly ask myself the question:

Is Norway really the best country in the world to live in for everyone?
Living with M.E. is a terrible situation by itself, but that’s not why I’m writing to you. I write because especially children with M.E. and their parents today are terribly distrusted and misjudged …”

http://fryvil.com/2015/02/05/letter-to-the-king/