Looking For Some Direction On Advocacy

[Robina]

Okay... having found out recently that I have celiac's... and through research and spending time on these boards... I have to say that I am disgusted with the fact that celiac's gets so little attention... I mean if it does in fact affect so many people... why on earth aren't people more aware of this... especially doctors?! Anyway... I don't want to whine... I want to do something about it... any tips on advocating for celiac awareness???

[Lisa]

Robina:

I admire you willingness to help put the word out there. Here is just a thought. I get a daily paper from Virginia (I live in North Carolina), and every day there is a health g&a from a doctor. I know that it is a national "filler piece", but that may work.

I have often considered writing, and I may do so in the near future, with a subject pertaining to "Why are so many doctors uneducated to Celiac Disease, when it seems so prevalent and under dx".

In otherwords, hit the general public and then the public will ask of the doctors.........and then they will have to stand up.

Just my thoughts, but thoughts are not action. I'm with you.

Lisa

[tiffjake]

There are also events that you could promote or do one of your own. Our local support group is putting together a 5k for Celiac Awareness (www.gotguts5k.com). You could do something like that! I am really excited about this one!

[Canadian Karen]

Awhile back, I suggested that we do a letter writing campagn to the insurance companies to force the doctors to check for it more.....

Here are the letters I made:

INSURANCE COMPANY

ATTN: DISABILITY CLAIMS DEPT.

To Whom it May Concern:

I am attempting to spearhead a campaign to raise awareness of Celiac Disease and its negative impact not only to hundreds of thousands of undiagnosed celiacs, but the financial impact this insidious disease has on your particular industry.

Celiac disease, also known as gluten intolerance, is a genetic autoimmune disease that affects 1 in 133 North Americans. Symptoms of celiac disease can range from the classic features, such as diarrhea, weight loss, depression, osteoporisis, peripheral nervous system disease and malnutrition, to latent symptoms such as isolated nutrient deficiencies, but no gastrointestinal symptoms. In fact, celiac disease can manifest itself in any one of 200 various symptoms.

The medical establishment is woefully uneducated about this disease. In fact, Celiac Disease is listed as one of the most underdiagnosed diseases in North America. The average timeframe from onset of symptoms to final proper diagnosis is 11 years. That is 11 years of endless medical tests, hospitalizations, medications, lost work hours and disability claims. It is that important fact that I truly believe is of great importance to your industry and hopefully will spur you into action to start educating doctors about this disease in an effort to have this disease properly diagnosed at the onset of symptoms. This could save your industry countless dollars in unnecessary medical costs. This disease can be diagnosed by a simple blood test. One simple test. The amount of money that will be saved by your industry in the long term would be staggering.

I urge you to send a representative to the next Celiac Association Conference in your area. The knowledge you will obtain there could drastically affect future claims and significantly reduce the cases you currently have who actually have celiac disease and still are not aware of it.

If the medical community has this disease in the forefront, not only those affected by celiac disease, but your industry, would benefit greatly. Help us to educate the doctors who are on the front line to recognize this disease in its early stages.

Thank you for your time and consideration.

Kind regards,

Signed Here……….

I also made a letter to send to celiac associations asking them to invite the insurance companies to their next conference:

CELIAC ASSOCIATION OF…………..

To Whom it may Concern:

My name is Karen and I have had celiac disease for many years although not properly diagnosed until 4 years ago. Unfortunately, my long road to proper diagnosis is all too familiar. I am part of a group of fellow celiacs who are earnestly trying to change that.

I am involved in a campaign to send out letters to insurance company representatives, requesting them to attend a Celiac Disease Conference in their area. It is our hope that once the insurance industry is properly educated about celiac disease and its financial implications of this disease not being properly diagnosed in a timely manner, they will take action to rectify this problem. We feel that if the insurance industry discovered how much money is wasted on medical tests, hospitalizations, lost work hours and disability claims, just because the medical establishment is woefully uneducated about this disease, that they will take action and start realizing that by just one simple blood test, a staggering amount of money could be saved. Not only would they benefit financially, but all those currently who have celiac disease and still have not been properly diagnosed just might have a chance to finally have the answer they have been searching many years for.

Please assist us in this endeavor by extending an invitation to insurance representatives in your area in an effort to educate them about this disease. They could become one of our most powerful advocates and if we secure their involvement in educating the medical establishment, we have gained a very powerful ally in our fight against this disease.

Attached you will find a copy of the letter that has been sent out en mass to insurance companies in an attempt to secure their involvement and assistance.

Thank you for your kind consideration.

Yours truly,

Your name……..

If you want to send these out to insurance companies in your area, that might raise their awareness abit!

It's always wonderful to have a celiac come aboard who is just as frustrated as we are about the lack of knowledge about this insidious disease and also have the strong desire to change things!

Hugs!

Karen

[debmidge]

Awhile back, I suggested that we do a letter writing campagn to the insurance companies to force the doctors to check for it more.....

Here are the letters I made:

I also made a letter to send to celiac associations asking them to invite the insurance companies to their next conference:

If you want to send these out to insurance companies in your area, that might raise their awareness abit!

It's always wonderful to have a celiac come aboard who is just as frustrated as we are about the lack of knowledge about this insidious disease and also have the strong desire to change things!

Hugs!

Karen

Karen, I like your letter a lot. What kind of responses are you getting?

Deb

[Canadian Karen]

Not as many as I would have liked, but hey, we can't expect miracles....

I am hoping that there are many more who didn't respond but have taken the advice and looked into it.....

Karen

[Gamecreature]

Personally, I think it's time for folks to write to their congressmen and get the FDA to establish some standards for "Gluten Free." I am so sick and tired of seeing the major companies using the "FDA hasn't established standards" copout for not being gluten free. By my estimate, there are 2.25 million Americans affected by this and since an uncontaminated diet is the only way to keep this in check they have a right to know that they food they eat is safe.

[Suzie-GFfamily]

Okay... having found out recently that I have celiac's... and through research and spending time on these boards... I have to say that I am disgusted with the fact that celiac's gets so little attention... I mean if it does in fact affect so many people... why on earth aren't people more aware of this... especially doctors?! Anyway... I don't want to whine... I want to do something about it... any tips on advocating for celiac awareness???

I feel exactly the same way you do. My mom was so sick last year, and has had typical symptoms for awhile, and still no one considered testing for celiac disease, not ever her GI. Once I suggested it to her, things turned around. And then it turned out that I'm celiac too and at least 2 of my 3 kids are. If only a physician had considered ordering a celiac blood test for me, instead of 16 years of thyroid tests, my bones would not be in such a sorry state.

It's really incredible that this disease is so unrecognized, if it wasn't so sad it could almost be funny. If we had a drug treatment, instead of a dietary one, the pharmaceutical companies would be educating the physicians. So we need to find an alternative way to educate the medical field.

One thing that I've considered is to focus on specific groups in a very tageted way. I am working on a presentation that could be given to health care providers in the obstetrical/gynecological field- they are in a very advantageous position to be able to pick up previously undiagnosed celiacs. For example, anemia is a common symptom of celiac disease and women are routinely screened for anemia during pregnancy. An education campaign directed at this group could mention that there are a wide range of possible signs and symptoms of celiac disease, and then could focus on some specific symptoms that are commonly assessed by these practioners. If physicians/midwives are educated about this disease they might consider testing their patients who present with any of the following symptoms for celiac disease:

- irregular menstrual periods

- late menarche

- infertility (test both partners- husband and wife)

- miscarriages

- anemia (one study found that about 7% of the women who were anemic during pregnancy had celiac disease)

- folic acid deficiency

- rapid weight loss post-partum

- constipation/diarrhea (women are often asked about their BMs post-partum)

- depression (many health care providers watch for signs of depression post-partum)

There are likely other symptoms that might come up during standard exams by a health care provider in this field. If they have some education about celiac disease, they might start picking up more of these cases instead of having them slip through the cracks.

Does anyone have any other symptoms that should be added to this specific list for ob/gyn practicioners?

Some other people on this board may be able to think of a specific way to target other fields too- endocrinologists for example.

Suzie

[Robina]

Awhile back, I suggested that we do a letter writing campagn to the insurance companies to force the doctors to check for it more.....

Here are the letters I made:

I also made a letter to send to celiac associations asking them to invite the insurance companies to their next conference:

If you want to send these out to insurance companies in your area, that might raise their awareness abit!

It's always wonderful to have a celiac come aboard who is just as frustrated as we are about the lack of knowledge about this insidious disease and also have the strong desire to change things!

Hugs!

Karen

Awesome letters!!! I don't have insurance (that's a whole nutha post.. lol) but I think these letters could be revised so that they can be sent to any organization or company... hmmm... one of my new clients is a reporter for our local paper... I think I'll ask her to do a piece on celiacs...

[Robina]

Hey Karen I doctored up one of your letters and sent it to my local newspaper's letter to the editor last night... they called me just a few minutes ago to verify I wrote the letter so that they can run it!!!

Okay so I've been thinking about organizing a charity event for celiac awareness... like one of the other poster's mentioned... anyway I'm a skier... so I'm thinking about organizing a ski competition... I'm going to call my favorite ski resort and discuss it with them... I'm sure I'll have no problem getting sponsors for the event... in my line of work I know many business owners... I'll keep you guys updated

[Canadian Karen]

Hey Karen I doctored up one of your letters and sent it to my local newspaper's letter to the editor last night... they called me just a few minutes ago to verify I wrote the letter so that they can run it!!!

Okay so I've been thinking about organizing a charity event for celiac awareness... like one of the other poster's mentioned... anyway I'm a skier... so I'm thinking about organizing a ski competition... I'm going to call my favorite ski resort and discuss it with them... I'm sure I'll have no problem getting sponsors for the event... in my line of work I know many business owners... I'll keep you guys updated

Awesome! Great work! Glad the letter helped!

Each and every effort to bring this to the forefront makes a difference!

Hugs.

Karen

[happygirl]

game creature,

although it hasn't come to fruition yet, it is in the works, as part of the 2006 FDA food labeling law. by 2008 there will be guidelines set up (I believe that is the goal). there is so much conflicting info (what makes something gluten free? how many ppms is safe? what about cross contamination? testing?) so that is why the slow process. BUT that was one of the main reasons that the labeling law went into effect-because of the celiac group pushing for it. so we ARE making progress!!!!!!!

[Corkdarrr]

Karen,

I'm thinking about stealing your letters too - very well written! I am just as frustrated as the next person on here that no one has ever heard of it. I have been working with one of my professors on outlining an independent study for next semester and I'm now intensely interested in allergens, etc.. in the hospitality industry (my major). (The current topic under discussion is food safety - y'all should be GLAD we don't eat out very much! )

I love writing letters and organizing stuff, so hopefully i can catch the initiative bug and start something down here in South Carolina.

Thanks!

Courtney

[Suzie-GFfamily]

Awesome letters!!! I don't have insurance (that's a whole nutha post.. lol) but I think these letters could be revised so that they can be sent to any organization or company... hmmm... one of my new clients is a reporter for our local paper... I think I'll ask her to do a piece on celiacs...

I like your letter Karen! Another place to send it would to politicians. The health care system could save an enormous amount of money on unnecessary tests, scans, consult fees for specialists, prescription drugs, etc. etc. if celiac disease was diagnosed earlier.

There are some good media reports about celiac disease:

Digestive disorder caused by gluten is common

By John Easton- Medical center Public Affairs

Open Original Shared Link

Illness of the intestines gets late notice in U.S.

Friday, December 09, 2005

By David P. Hamilton, The Wall Street Journal

Open Original Shared Link

The media might also be interested to know that an international conference on celiac disease is being held in North America next month- usually this conference is held in europe.

Open Original Shared Link

Plus there are some good sources online that could be given to local media for background info on celiac disease:

Celiac Disease Center at Columbia

Open Original Shared Link

National Digestive Diseases Information Clearinghouse (NDDIC)

Open Original Shared Link

University of Maryland, Center for Celiac Research

Open Original Shared Link

The University of Chicago Hospitals, Celiac Disease Program

Open Original Shared Link

Canadian Society of Intestinal Research

Open Original Shared Link

[Gamecreature]

I like your letter Karen! Another place to send it would to politicians. The health care system could save an enormous amount of money on unnecessary tests, scans, consult fees for specialists, prescription drugs, etc. etc. if celiac disease was diagnosed earlier.

There are some good media reports about celiac disease:

Digestive disorder caused by gluten is common

By John Easton- Medical center Public Affairs

Open Original Shared Link

Illness of the intestines gets late notice in U.S.

Friday, December 09, 2005

By David P. Hamilton, The Wall Street Journal

Open Original Shared Link

The media might also be interested to know that an international conference on celiac disease is being held in North America next month- usually this conference is held in europe.

Open Original Shared Link

Plus there are some good sources online that could be given to local media for background info on celiac disease:

Celiac Disease Center at Columbia

Open Original Shared Link

National Digestive Diseases Information Clearinghouse (NDDIC)

Open Original Shared Link

University of Maryland, Center for Celiac Research

Open Original Shared Link

The University of Chicago Hospitals, Celiac Disease Program

Open Original Shared Link

Canadian Society of Intestinal Research

Open Original Shared Link

Excellent resources. BTW, if anyone wants to contact their representative, you can find them here:

Open Original Shared Link

Open Original Shared Link