Advocacy
Life will become easier for celiacs as more people get diagnosed, making physicians, food manufactures, restaurants, and pharmaceutical companies more responsive to our needs. We can all do our part by spreading awareness one person at a time, as well as participating in advocacy projects on a larger scale.
"One of the major dilemmas for the celiac community is how to deal with
advisory labels on foods. Many choose to completely avoid products
which
display statements such as =91produced in the same plant with wheat
products,
or may contain wheat. Others may take a different approach based
on
personal experience. Regardless of the approach, these statements are a
concern. We now have the opportunity to tell the FDA what we really
think
about such labeling.
The FDA has announced that it will hold a public meeting on September
16,
2008, to gather additional information about the use of advisory
labeling of
allergens in food. That information will be used to help the agency in
determining: 1) how manufacturers currently use advisory labeling; 2)
how
consumers interpret different advisory labeling statements; and what
wording is most effective in communicating to consumers the likelihood
that
an allergen may be present in a food. The FDA is also interested in
learning if consumers find advisory labels useful when deciding which
foods
to purchase.
According to the Federal Register (FR) notice, the FDA is developing a
long-term strategy to assist manufacturers in using allergen advisory
labeling that is truthful and not misleading, conveys a clear and
uniform
message, and adequately informs allergic consumers and their caregivers.
Interestingly, the notice specifically focuses on the impact of
advisory
labels for those with food allergies. It makes NO MENTION of the impact
advisory labels may have on individuals who must adhere to a strict
gluten-free diet, i.e., those with celiac disease.
The official FR notice for the meeting can be accessed at:
www.cfsan.fda.gov/~lrd/fr080808.html .
Comments on the questions outlined in the FR notice may be submitted in
writing to: Division of Dockets Management (HFA-305), Food and Drug
Administration, 5630 Fishers Lane, rm. 1061, Rockville, MD 20852; or
electronically through www.regulations.gov. The Docket number is
FDA-2008-N-0429. The deadline for the comments is January 14, 2009.
Additional information is available on the ACDA website."
Beth Hillson
President
American Celiac Disease Alliance
From the American Celiac Disease Alliance: "The American Celiac Disease Alliance (ACDA) has been working for several years to help educate Members of Congress about the celiac disease. Our goal is to get them to understand its prevalence and the issues faced by those with the disease, so they will take-on the more pressing issues like reimbursement for dietitian services, improved training for physicians, gluten-free foods for celiac students, and blood screening for individuals anemia or type I diabetes.
Please write to your Representative, ask him or her cosponsor HConRes 70, and to push for a floor vote as soon as possible. An email can be sent by going to the `Action Alert' section on the ACDA website at www.americanceliac.org/advocacy.htm
Many in leaders in the celiac community have already endorsed the bill, including the celiac research centers and the American Dietetic Association. I hope that you will join us in helping to educate Congress about celiac disease!
Andrea Levario, 4/1/08
American Celiac Disease Alliance
"As for the ACDA, we were honored last week when both the American
College of
Gastroenterology and the American Gastroenterology Association endorsed
the
National Celiac Disease Awareness bill, HConRes 70 and May as
Awareness
Month. These are the country's leading medical associations dedicated
to
the education, training, and research on digestive diseases. They have
joined the American Dietetic Association and the American Osteopathic
Association in urging greater awareness about and research funding for
Celiac Disease." Andrea Levario
From a dietician:"Please see below for info about a new bill to support people with
CD, and research on CD. Here's some of the text of the bill:
Resolved by the House of Representatives (the Senate concurring),
That Congress--
(1) supports the goals and ideals of National Celiac Awareness Month;
(2) should work with health care providers and celiac disease
advocacy and education organizations to encourage screening and
early detection of celiac disease; and
(3) should increase Federal funding for celiac disease research.
There's also info on supporting services of a Registered Dietitian
for people with CD.
To send a letter, contact your representative through this link.
http://capwiz.com/celiac/issues/alert/?alertid=9705961&type=CO
If the link doesn't display, go to http://www.americanceliac.org/advocacy.htm
Cheryl Harris
www.harriswholehealth.com
Celiacs Need Dietitian Services
Take Action!
Ask Congress to Pass HConRes 70
The NIH Consensus Development Conference on Celiac Disease
identified consultation with a skilled dietitian as one of six key
elements in the management of individuals with celiac disease.
The gluten-free diet represents a huge lifestyle change for people
diagnosed with celiac disease. Only dietitians are uniquely
qualified to provide the medical nutrition therapy needed by celiac
patients.
More awareness is needed about celiac disease, and vital role
dietitians play in their medical care.
TAKE ACTION – Ask your Representative to cosponsor H.Con.Res. 70,
National Celiac Disease Awareness legislation - TODAY !!
(formerly the American Celiac Task Force)
A not-for-profit organization, the mission of the ACDA is to provide a uniform
voice on behalf of persons with Celiac Disease through education and advocacy
initiatives. It is "the national umbrella organization representing the needs of patients, researchers, manufacturers, and others in the celiac community." The
group was originally founded to help change the nation's food labeling laws
to include information about food allergens. They were instrumental in getting
the Food Allergen Labeling and Consumer Protection Act passed in 2004.
It is recommended to sign up on their website, www.americanceliac.org under "Advocacy" to receive the latest updates on legislation that affects celiacs. They will let you know how you can participate in advocating for the rights of celiacs, such as writing congressman, taking surverys, etc. Or without registering, you can always go to their website, click on "Advocacy", and then look for "Action Alerts".
This will show you exactly how you can easily and quickly advocate for a current
celiac legislative issue by simply sending an email to the appropriate person(s).
For further information contact: Andrea Levario, Executive Director
info@Americanceliac.org
www.americanceliac.org
According to the NIH Consensus Panel on Celiac Disease, six factors are key to the successful management of celiac disease:
Consultation with a skilled dietitian;
Education about the disease;
Lifelong adherence to a gluten-free diet;
Identification and treatment of nutritional deficiencies;
Access to an advocacy group; and
Continuous long-term followup by a multidisciplinary team.
H.Con.Res. 70, sponsored by Rep. Nita Lowey (NY), highlights the need for individuals with celiac disease to have access to nutritional counseling; the need for better education among physicians and other health professionals about the disease; and advocates for greater federal funding for celiac research.
Click Take Action -- Ask Congress to pass H.Con.Res. 70 -- TODAY!
American Celiac Disease Alliance
www.americanceliac.org
info@americanceliac.org
9/06
"The American Celiac Disease Alliance recently received a copy of FDA's report to Congress regarding cross-contact with food allergens during food manufacture and distribution, and consumer preferences about advisory labeling. The report was required as part of the Food Allergen Labeling and Consumer Protection Act (FALCPA).
The report is now online at: http://www.cfsan.fda.gov/~acrobat/alrgrep.pdf
The FDA has also updated its question and answers on FALCPA for consumers. The Information for Consumers: Food Allergen Labeling And Consumer Protection Act of 2004 Questions and Answers can be accessed by going to: http://www.cfsan.fda.gov/~dms/alrgqa.html
FDA's final guidance for industry was posted in April, that information is available at: http://www.cfsan.fda.gov/~dms/alrguid3.html
We greatly appreciate the efforts of the FDA / CFSAN staff to keep us informed about its FALCPA related activities.
Andrea Levario, J.D.
Executive Director
American Celiac Disease Alliance
Info@AmericanCeliac.org
www.AmericanCeliac.org
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The Food Allergen Labeling and Consumer Protection Act (FALCPA) S.741 passed the House of Representatives on July 20, 2004. The bill was signed by President Bush on August 2, which means it is now in effect. A quote from the ACTF group:
"Every call, letter, meeting, petition, and crayoned picture paid off. Thanks to you - the celiac community - we beat incredible odds and got this bill passed. Congratulations!!"
This bill accomplishes several things:
-
It requires food packaging to clearly list any of the top eight ingredients that cause allergic reactions used in the product by Jan. 1, 2006.
-
It closes a loophole that lets some ingredients be grouped as "natural flavorings." By 2006 manufacturers will need to specify what is in the natural flavorings.
-
It requires that a standardized definition of "gluten free" and its appropriate use be determined by the Secretary of Health and Human Services by the year 2008.
The passing of this landmark legislation may be greatly credited to the hard
work of the American Celiac Task Force (see above) and their letter writing
campaign that so many of us participated in. Although only wheat is in the
top 8 allergens (not barley, rye or oats) this will still have a tremendously
positive impact on those with celiac disease. Congratulations to all of us!
To read the actual bill, click on Food Allergen Labeling and Consumer Protection Act of 2004.
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www.TeamGlutenFree.org
Please visit our new and improved website, www.teamglutenfree.org ! You can find out what Team Gluten-Free is all about, our upcoming events, and download information packets. Please let your friends and family members know about our new site and new look! Thanks for your support and I hope to see you on the team soon!
Take care,
Carrie Owen
Team Gluten-Free , 9/14/07
"Please join our Team Gluten-Free mailing list to receive the latest race and event information. You can email me at info@teamglutenfree.org and simply provide your physical and email address. If you know of anyone who would like to receive periodic Team Gluten-Free news, please let them know about us!
Team Gluten-Free, a project of the Celiac Disease Foundation, a 501(c)(3) non-profit, public benefit corporation, is a training program for runners, walkers and cyclists who participate in races across the United States to raise awareness and funds for Celiac Disease. The money we raise goes directly to research and awareness programs and camp scholarships for Celiac children.
We will not provide your information to any other organization."
Thanks!
Carrie Owen
Team Gluten-Free, 9/25
Team GlutenFree is an endurance and sports training program. Runners, walkers
and cyclists participate in races across the United States to raise awareness
and funds for research and Celiac children’s camp scholarships. Since
our inception in 2005, we have raised more than $50,000 and sent 24 kids to
summer camp.
Team GlutenFree members receive:
- Comprehensive training schedules
- Race day team tank or t-shirt
- Fundraising materials and ideas
- Nutrition, hydration and clothing advice
- A once-in-a-lifetime experience to complete a personal goal and, at the
same time, help Celiac Disease research and awareness programs
- SUPPORT! SUPPORT! SUPPORT
Please visit our website, www.teamglutenfree.org and check out our
2007 race line up! Whether you are an experienced runner or beginning
walker,
anyone
can be a Team GlutenFree member! You can email us at info@teamglutenfree.org
to receive an information packet!
JOIN THE TEAM!
Carrie Owen
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