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I read with interest the recent postings about "Consolidating Our Efforts".
The summaries by Jacqueline Maxwell were excellent.

I have been involved with CSA/USA for the last eight years at both the
chapter and national levels and am currently the Chairman of the CSA Long
Range Planning Committee.  The CSA structure of six regions across the U.S.
with over 90 chapters and almost 10,000 members has provided a built in
conduit for two-way conversations all over the country on any number of
topics.  There have been extensive conversations with many different people
on this very topic of "speaking with one voice".  The discussions invariably
end up, not with conclusions, but rather with three questions which I would
like to offer for your consideration.

The first question is invariably, why?  Why come together?  Is everyone else
together?  Does everyone else speak with one voice?  The answer, of course,
depends on where you look.  Europe?  No.  Each country has its own national
society.  Not all societies agree nor do all societies support the same
topics in the same way.  Wheat starch and the Codex Alimentarius lower limit
of gluten measurement are two of the latest disagreements across Europe.
South America?  The same thing but they are basically just getting organized.
 Canada?  Canada is unique.  Although the country is divided into six
regions, similar to CSA, there is a combination of a professional national
office, regional/local chapters, and French/English language variations which
leads to consensus.  The United States?  No, not in any aspect of Celiac
Disease.  For example, do all gastroenterologists speak with one voice?  No.
The last I knew there were at least twelve societies for gastros.  Or
dietitians?  No.  The last I knew there were at least two national and many
unaffiliated local and regional societies.  Or manufacturers?  No.   Each is
a separate business with their own business plan as they should be.  So why
should only the patient portion of the celiac community in the United States,
which has developed from the bottom up rather than from the top down, be one
voice?   What is the compelling reason for celiacs to speak as one?  Do all
celiacs have the same problems?  No, only as regards wheat, rye, barley and
oats.  No as regards any and all other medical problems.  No as regards all
other parts of life from food tastes to exercise regimens to TV, books,
movies, politics and religion.  So why should only the United States celiac
patient community speak with one voice?

The second question is always what?  What should this one voice speak about?
Diet?   Labeling?  Eating Out?  GF Products?  Insurance?  Children?  Adults?
The newly diagnosed?  Diagnosis?  Education?  Research?  Law?  The problem de
jour?  The amount that is known and the amount that is unknown changes and
expands each and every day.  It is impossible for any organization to focus
on everything at the same time.   So what does this one voice focus on?  What
is it's mission statement and objectives?   Until the focus of this one voice
can be reduced to a single, or at most a few, primary objectives, among the
disparate agendas of the entire celiac community and its inhabitants, the
voice will be worn out trying to get attention for the item it is speaking on
today?  One more voice in the wilderness.

And what does this one voice speak about next month or next year or next
decade?  Is it to be a consistent voice over time?  How long?  Is it a one
time voice?  And for how long?  Is it a believable voice unless it repeats
itself for a long enough period of time?   And if it keeps changing its tune,
is it believable at all?  But is what it should be saying the same today as
five or ten years ago?  So why is it to be any more believable than any other
voice that already exists?  So, why one voice and what does it say?

And finally, how?  How does one voice get generated?  Merge all existing
organizations?  Start a new organization?  Develop an ad hoc process for
addressing a single item at a time?  How is such a process coordinated?  How
is such a process staffed?  Volunteers?  How is this to be accomplished in
the face of an aging volunteer group for all volunteer organizations
everywhere and a declining influx of younger volunteers?  Paid staff?  How
does the paid staff get trained or must they be celiac patients?  How does
the staff get retrained and/or updated?  How is the
process/staff/organization funded?  How is oversight maintained?  In short,
if there is a compelling reason to speak with one voice and an agreed song to
sing, then how is the song paid for?

I maintain an open mind.  At the moment, however, I am stuck at convincing
myself that there is any overwhelming reason that here in the United States
it is necessary, or wise,  for only the patient portion of the celiac
community to "speak with one voice".  While the concept has a great political
ring, "speak with one voice", it bumps up against the reality that each
organization focuses on a different aspect of celiac life.  CSA, for example,
is primarily concerned with patient assistance - Celiacs Helping Celiacs.
Another has political awareness as a primary concern.  A third has continuing
education of the medical community as a major function.  A fourth is focused
on research.  And so on.   Why should these organizations spare precious
time, effort, energy and funds to "speak with one voice"?  How will speaking
with one voice further the primary function of each organization?  What will
convince each organization's Governing Board to consider the goal?  What will
convince each organization's Governing Board that it is a worthwhile goal?
And what if the "one voice" is wrong?

As I say, I have no answers.  Just an open mind and a lengthy list of
questions.  Thanks for listening.

Tom Sullivan
Chairman, CSA/USA Long Range Planning Committee

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