CeliActivism: Health Care Reform

The Obama transition team welcomes input

During the second half of this month, Tom Daschle and the Obama transition team will welcome public input on its health care policy. Much of the attention at the forthcoming health care community discussions will probably be on how more people (especially children) can receive affordable health insurance, but this might be an ideal time to become more aggressive about finding ways to heighten awareness of celiac disease.

As you might recall, Barack Obama supports preventative medicine and judicious government spending. I would imagine that he is also looking to create "success stories" during the initial phase of his presidency.

I think that a celiac disease awareness policy would achieve those goals because

* More than 2,000,000 Americans of all ages (about one percent of the population) are estimated to have celiac disease that is undiagnosed or misdiagnosed even though they may be experiencing symptoms.

* Diagnosing and treating celiac disease in the undiagnosed children can help them develop normally, avoiding illnesses such as osteoporosis.

* Diagnosing and treating celiac disease in the undiagnosed general population can also prove beneficial, fending off osteoporosis as well as chronic fatigue, thyroid disease, and some forms of cancer, along with many other health issues.

* Decreasing the "time to diagnosis" from its current length of about 10 years can eliminate unnecessary tests and medical visits.

* Celiac disease can be initially screened through simple and relatively inexpensive blood tests.

* Celiac disease is treatable by diet, not medication or operations or procedures.

* The Obama administration does not need to initiate an awareness program from scratch. It can shape a policy that is informed by the examples of other countries, especially those in Europe.

* By raising awareness at a point in time when the vast majority of people with celiac disease are unidentified, the Obama administration can measurably accelerate the rate of diagnosis—in other words, it can point to results.

I hope that this type of message makes its way to people who can see the reasoning in it and take action to make it happen. If you agree, please think of how you can help to get the message across, whether it's through a community health care discussion, contact with sympathetic political figures such as Kemp Hannon, Nita Lowey, and Hillary Clinton, or contact with an advocacy group such as the American Celiac Disease Alliance (ACDA) and National Foundation for Celiac Awareness (NFCA).

Gluten-Free, Politically

It's a very good morning over at Gluten-Free NYC, filled with the promise of positive change—and not just because of enthusiasm over Barack Obama's victory. As the nation moves toward a fresh start and the possibility of more unity, it strikes GFNYC that a health policy that raises public awareness of celiac disease is something that both Democrats and Republicans can agree upon.

As you might recall, GFNYC supported Barack Obama but noted that both of the big party presidential tickets could offer improvements for people with celiac disease. Gluten Free Blog expressed a similar position in favor of Obama.

As John McCain and Sarah Palin return to their regular jobs as senator and governor, they can still follow through on their concern for "special needs" households, including those affected by celiac disease and associated conditions, including Down Syndrome and, possibly, autism as it is currently being diagnosed.

Palin in particular should also be aware that millions of Americans may still be undiagnosed with celiac disease, as her prominent supporter Jane Swift and her outspoken advocate Elisabeth Hasselbeck are known to have the condition. So perhaps the Anchorage GIG group can do something with that.

Closer to home, Kemp Hannon retained his seat in the New York State Senate. He has recognized that early screening for celiac disease is an idea worth consideration.

As far as the national government is concerned, GFNYC notes that Representative Nita Lowey, Senator James Inhofe, and Senator Ben Nelson all remain in office. They might not agree on much, but each has advocated on behalf of people with celiac disease.

Also remaining in office is Senator Hillary Clinton, an advocate of universal health care whose husband Bill recently talked up the value of "gluten-free" cassava.

Presiding over all of these politicians will be Barack Obama, a supporter of preventive medicine and universal health care for children who recognizes that some government programs are worth additional funding even during budgetary crises. GFNYC hopes that the FDA's ability to enforce food labeling accuracy will improve under his administration.

Celiac disease might not mean much to the general population in the great scheme of things. But sensible, progressive policies regarding celiac disease should find a place on the agenda as American leaders search for ways to build unity and consensus.

Bill Clinton "Gets" the Gluten-Free Boom

Former president Bill Clinton, husband of New York Senator Hillary Clinton, noted this weekend that Rwandan cassava flour "has 'enormous potential' as an export to Western nations since it is gluten-free," according to this item from Good Morning America.

I wouldn't want to argue with that, as I'm a big fan of gluten-free high-fiber crackers made from cassava—and they've been pretty scarce around here lately. I miss them!

The Clinton Foundation helps Rwandan farmers grow cassava. So, in case you had any doubts, you can certainly count Bill Clinton along with Nita Lowey and Kemp Hannon as area politicians who are gluten-conscious.

GLUTEN-FREE CALENDAR CONUNDRUM!

I recently read some emails on the international celiac listserv that helped me to understand why there seem to be at least two celiac disease awareness months.

Let's start with a message from Beth Hillson, president of the American Celiac Disease Alliance (ACDA), about May being Celiac Disease Awareness Month:

In response to the question about May as Celiac Awareness month -- the overwhelming majority of celiac organizations and all of the Celiac Research Centers in the United States recognize May as National Celiac Disease Awareness Month.

Internationally, the Association of European Coeliac Societies (AECS) recognizes Celiac Disease in May and celiac events are held throughout the world to raise awareness.
(The association represents 26 countries of the EU - including Andorra, Austria, Belgium, Croatia, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Luxembourg, Malta, Netherlands, Norway, Portugal, Romania, Russia, Slovakia, Slovenia, Spain, Sweden, Switzerland, and UK)

The May observance in the United States was chosen to coincide with our international colleagues. It was also done in recognition of the many other medical conditions related to celiac disease that are observed in May. Celiac disease is still relatively unknown and being able to draw connections between these medical conditions and celiac disease helps to elevate its importance and enhance awareness. Some of the other May health observances include:

Digestive Diseases Awareness Month
Digestive Diseases Week
Food Allergy Awareness Month
Food Allergy Week
National Arthritis Month
National Osteoporosis Awareness and Prevention Month
Women's Health Week and Women's Health Check-up day

Organizations, Research Centers, and Companies supporting the May observance:

Celiac Disease Foundation
Gluten Intolerance Group
Westchester Celiac Sprue Support Group
American Celiac Disease Alliance
National Foundation for Celiac Awareness
University of Maryland Center for Celiac Research
University of Chicago Celiac Disease Program
Celiac Disease Center at Columbia University
Wm. K. Warren Celiac Disease Research Center UC San Diego
Bob & Ruth's Gluten-Free Dining & Travel Club
Ener-G Foods, Inc.
Enjoy Life BrandsT
Foods by George
Gluten-Free Living
GlutenFree PassportR
Glutino-USA
Kimball Genetics
Living Without
Pamela's Products
Prometheus Laboratories, Inc.
Savory Palate, Inc.

Its worth noting that October is Breast Cancer Awareness Month. It is extremely difficult for any condition, to compete for attention at that time. And since recognition and attention are key to raising awareness, May is a better fit.

Congresswoman Nita Lowey (NY) introduced legislation in 2004, 2006, and again, this year (H.Con.Res. 70) which emphasizes the designation of May as National Celiac Disease Awareness Month. That legislation now has 29 cosponsors and more are expected once Congress returns later this month.

I hope this helps clarify why May is supported and endorsed as National Celiac Disease Awareness Month.

Before considering why others consider October to be Celiac Disease Awareness Month, let's pause to recognize Celiac Disease Awareness Day—September 13, the birthday of Samuel Gee, who is widely considered to be the "discoverer" of celiac disease.

As for October being Celiac Disease Awareness Month, that is basically the province of the Celiac Sprue Association (CSA) and the Canadian Celiac Association (CCA)—which is, nevertheless, having its national conference in May!

Of course, here at GFNYC, every day is Celiac Disease Awareness Day—and every month is Celiac Disease Awareness Month!

CELIACTION: CELIAC AWARENESS MONTH...PLUS FUNDING!

Quick: Which month is Celiac Awareness Month?

Beth Hillson--president of the American Celiac Disease Alliance (ACDA) and founder of The Gluten-Free Pantry--just issued the following call to action:

On February 16, 2007, Representative Nita Lowey introduced H.Con.Res. 70, which endorses May as Celiac Awareness Month, and calls for increased federal funding for celiac research.

Rep. Lowey was one of the lead sponsors of the Food Allergen Labeling and Consumer Protection Act (FALCPA) which requires food manufacturers to list the top 8 allergens on their product labels. The law also required the FDA to set rules for using the term 'gluten-free' when labeling products.

The American Celiac Disease Alliance applauds Rep. Lowey for her continued efforts to raise awareness about celiac disease, and for her support of our community.

Ask your representative to cosponsor H.Con.Res. 70. Email them directly by going to the ACDA online advocacy site www.capwiz.com/celiac and entering your zip code under "Elected Officials." Your voice will make a difference.

Thank you!

Beth Hillson
President, American Celiac Disease Alliance