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National Celiac Groups Attend Advocacy Efforts in Washington DC

The Gluten Intolerance Group (GIG), Celiac Disease Foundation (CDF), American
Celiac Society (ACS), and Celiac Sprue Association/United States of America
(CSA/USA) were formally represented.

Celiac organizations and patients from several states recently attended two
very important educational lobbying efforts in Washington DC. We were
advocates for the Digestive Disease National Coalition (DDNC) and National
Institute for Arthritis, Musculoskeletal and Skin Diseases (NIAMS).Our goals
in lobbying were 2-fold. First to encourage the Senators and Representatives
we visited to support a 16.5 % increase in the Budget for NIH (National
Institutes of Health) and to provide $405 million to NIAMS in fiscal year
2001. This money is important to doubling the NIH budget by 2003. NIH is the
major funding organization for research that is supported by government
grants. Often research that may not seem directly linked to celiac disease
and dermatitis herpetiformis, is beneficial to our disease and others. A good
example is the Genome Project. Genetic mapping will help researchers refine
their research and hopefully speed efforts to find causes and cures for
diseases.

The second goal was to increase awareness and educate about our particular
disease. We accomplished this very well. On March19th celiac disease had the
largest patient representative group at the DDNC a " nearly 20
representatives.
Members of DDNC and NIH were very impressed by our representation of celiac
disease. The following week we had 3 representatives attend the NIAMS
Advocacy efforts. While visiting our Congress people, we had the opportunity
to tell our stories and how legislative decisions impact us individually, as
well as share some facts about CD/DH. These Fact Sheets and other materials
were left with each congressional office we visited.

DDNC represents many gastrointestinal disease organizations.We are pleased
that all the national celia corganizations are members of this coalition.
NIAMS and CPA-SDR (Coalition ofPatient Advocates for Skin Disease Research)
are the coalition groups that the Gluten Intolerance Group (GIG) is a member
of, in order to represent persons with dermatitis herpetiformis. Work through
coalitions such as these is very important. These coalitions are strong
forces with great influence in the medical areas they represent.

What next:  Patient advocacy work is important. However, you should also know
that nonprofit groups (501c3) are severely limited, by law, in the amount of
funding that can go toward advocacy work. So we need you!

1)     Write to your Senators and Representatives about your disease and
encourage them to support the NIH budget increase. Send them copies of the
Fact Sheet. Visit them when they are at home (usually weekends and Mondays).

2)     Join the national celiac organizations in representing a united,
common voice.  We are strongest when we speak as one. The more voices saying
the same thing the better. Let your national group(s) know you want to
participate in these activities. The Gluten Intolerance Group (GIG), Celiac
Disease Foundation (CDF), AmericanCeliac Society (ACS), and Celiac Sprue
Association/United States of America(CSA/USA) were formally represented. DDNC
and NIAMS groups are often invited to participate in advocacy workthroughout
the year.

3)     Plan to come to Washington DC next year. Often Congress peopleare very
busy and sometimes selective in whom they see. They want to hear from
theirconstituents.  An example was a Senatorfrom California who wanted to
seeconstituents from her district. If there had not been a representative
fromCalifornia on a team, that senator would not have heard about Celiac
Disease.

4)     We need representatives from as many states as possible.Although, our
lobbying efforts are at the mercy of the Congressa (TM) schedule,these events
often take place in March or April.

5)     Offer to testify. Testifying before Budget and HealthCommittees is by
written invitation only. First we must write letters askingpermission to
testify and then wait to be approved. It is a wonderfulexperience to express
our storyin this manner. Children and people severely affected by the disease
are themost influential.

This summary was written as a joint effort of all the national celiac
organizations: GIG, CDF, CSA/USA, and ACS.

Submitted by:

Nancy
Seattle, WA
USA