Wednesday, September 29, 2010

ADVOCACY ALERT

 
Permission to copy, forward and repost is hereby granted.
***

ADVOCACY  ALERT:

Write letters to Director Collins before the CFSAC meeting scheduled for
Oct. 12-14, 2010, preferably within the next week so there will be ample
time to forward them to the appropriate parties.

Francis S. Collins, M.D., PhD.
Director, National Institutes of Health
Francis.Collins@nih.hhs.gov


ProHealth recently published an article on the September 7th meeting of
the three high-up NIH officials with a group of nine ME/FS patients and
their families and Dr. Dan Peterson prior to the XMRV conference. 
Please refer to that posting at
www.prohealth.com/library/showarticle.cfm?libid=15587 for detailed
information.  Portions of that meeting will be referred to below.  Dr.
Michael Gottesman, Chief of NCI's Laboratory of Cell Biology and
Director of the NIH Office of Intramural Research, indicated at the
meeting that letters should be written stating our specific concrete
grievances and concerns and sent to the Director Collins' office where
he promised they will be addressed and forwarded to the right person
with the Director's office.  We need to take advantage of this
opportunity and send letters to Director Collins before the next CFSAC
meeting so the NIH representatives at the meeting will be aware of them.

You will note in the article that a number of areas of concern were
addressed by the patients.

    * The need for Trust Building.
    * The need for Funding (they suggested $100 million over two years).
    * The need for Centers of Excellence funded by the NIH.
    * The need for Funding for Fast-Track Clinical Trials for Treatments.
    * The need for Attention to Pediatric CFS.

In addition to the items listed above, the NIH puts in the Program
Announcement the sorts of research it would be willing to fund and the
last Program Announcement didn't include clinical trials.  We need to
request that they be included.

    * It is critical that any future NIH Program Announcement include
      translational, phase 1, phase 2 and even phase 3 clinical trials.

You might also want to refer back to your recent CFSAC public testimony
(if you prepared one) and address some of those issues which may include
some of the above items as well as others, i.e.:

    * Difficulty in being approved for or in receiving disability insurance.
    * Difficulty in obtaining access to health care for CFS.

You obviously don't need to cover every suggested item, just the ones
you feel strongly about.  It is very important, however,  that you take
the time to write Director Collins to make sure he knows we're paying
attention to what's going on.  Dr. Gottesman indicated to the patients
and Dr. Peterson that they would meet again in the future, possibly
within three months, so this is an excellent opportunity to make our
concerns known, not only for the CFSAC meeting but also the possible
future patient meeting.

Thank you for participating in this letter-writing campaign.  Once
again, we have an opportunity to be heard, but we are only effective if
enough small voices join together to become a loud roar .  Please don't
let this opportunity slip away.


Pat Sonnett on behalf of
Miami CFIDS Support & Advocacy Group
 

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