How Do We Get The Word Out To The Doctors?

[4tomorrow]

I have a GI doc. appt tomorrow. She refered to the biopsy as the "gold standard" and mine was inconclusive. I printed out Dr. Fine's speech, but it's 8 pgs. Is there anything better for me to take to help her understand that I could just be gluten intolerant or not have been sick long enough?

Any info would be much appreciated.

[Judyin Philly]

Also, send a copy of this letter to your local Celiac Association branch, with an additional note asking them to please approach the insurance industry and extend an invitation to the next conference......

Karen

Gosh, Karen I'm glad your back...What a brilliant Idea and glad you put together such a great letter from the info you got from someone on the panel...

I'm going nuts here trying to pick out ideas from other postings and wanted to cut and paste the ideas on Karens page with the name beside it and can't get the job done...

There is just so many great ideas here I don't know where to start.

Ok

1. I'm making a copy of your letter and adding somewhere about the diabetes, fibromyalgia and obesity issue too.

2. Like the idea of printing the letter (however each person wants to personalize it) and taking to their support meetings and get their letters going too.

3. Someone on here said something about the drs...I know we need to get the info to them. was it Rachel who said one of her drs. said it was on the top 10 issues...I'm so mixed up now...but I'd like to send a letter to my dr and tell him the importance of early dx. I am not a WRITER so this isn't my talent..but if someone out there is...a letter on the line of Karen's would be great too.

4 Armetta had a great idea but can't remember what it was now...and can't see as I'm posting and scrolling where it ever is.

Since I'm starting a new job and have so much going on..I'll try to get this one letter out at least.

Good job everyone...These ideas are really fantastic.

Also...there's a new post by FN I think, saying GMA emailed her about putting the video up again.

Ask her to start a new thread so we can email them in mass and get it up again. then ...If it does go up.

I'm calling my dr of 25 years who never dx'd me. He was busy helping me deal with the tumors and rare bone disorder..... but was the one who finally did order the tests...I don't fit the 'skinny' profile....I'm fat but won't before ever....He's excited with my 35 # weight loss so maybe other obese folks and get them to listen...

have to get off...

Armetta...I'm so sorry about your eyes..I had the detached retina and it's a very SCAREY thing.

take care.

AGAIN...thanks so much Karen and so glad your back.

I second the motion..

Judy in Philly

ADD is rearing it's ugly head...and I'm tired

[Canadian Karen]

I just got some information on the Canadian Celiac Association National Conference in 2006. The conference will be held in Toronto at the Renaissance Airport Hotel from May 26-28 2006 (Week-end). This is the info that I have so far:

Celiacs in the City

"Come and celebrate the Toronto Chapter's 25th Anniversary at the Canadian Celaic Association National Conference on May 26-28, 2006. Award winning chef James Piggott of the Renaissance Airport Hotel welcomes the opportunity to create menus of unprecedented flavour in the world of gluten-free dining for everyone to enjoy. Every plate will be a work of art. Don't miss the feast! Hear Canadian and international reseach experts on the latest developments in Celiac Disease research, diagnosis and treatment. Meet exhibitors and sample their new and delicious gluten-free products".

More info can be found here: Open Original Shared Link

or at this # National Office 1-800-363-7296

I am planning on going and I will post more info once I get it

I plan on contacting the Toronto Chapter regarding their 25th Anniversary and the Canadian Celiac Association regarding their National Conference to ask them to extend invitations to insurance company representatives. I will also send them copies of my letter. I am hoping this Conference will be a catalyst for our plan and will start to put things in motion (from a Canadian standpoint).......

Hugs.

Karen

[Judyin Philly]

Karen,

Gosh I'd love to go to a conference.

Have you ever been to one?

This above Idea was great too.

your on a roll girl

Judy

PS I tried to print the thread...i hit the quote on the first post and usually the thread will print but now the ends of the sentences are not there...page isn't wide enought.

Any Ideas on how i can do this print.'

j

[ianm]

Karen, your fishing trip is oficially over. We're lost without you.

Pressuring the insurance companies is the best way to go. The reason that doctors won't test for or acknowledge celiac is because the INSURANCE COMPANIES are forcing them to limit patient visits to 10-15 minutes, write a prescription(s) and send them out the door. If we can convince insurance companies that celiac testing is the cheapest, easiest way for them to save biliions then they will have no choice but to listen. The drug companies will hate us but screw them.

[Canadian Karen]

Here is a draft of a letter to go out to Celiac Associations in your area:

CELIAC ASSOCIATION OF…………..

To Whom it may Concern:

My name is Karen (last name) 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……..

Hugs.

Karen

[Judyin Philly]

Here is a draft of a letter to go out to Celiac Associations in your area:

Hugs.

Karen

Fantastic Job Karen,

thanks so much

Will use with the support group too.

I can't thank u enough for taking the time and EFFORT to this for us.

Judy in Philly

[Rusla]

After re-reading the letter (told ya it's a draft!!), I think it is very important to mention diabetes as a symptom, since that is a very mainstream complication that has been getting lots of attention lately.....

Any thoughts?

Karen

I think also mentioning thryoid disease, Graves and Hashimoto's.

Saying something to the effect: Many people who are diagnosed with Graves, Hashimotos, Diabetes, Colitis,Fibromyalgia and Chronic Fatique to mention a few may also have Celiac disease.

Just a thought.

[Canadian Karen]

I think also mentioning thryoid disease, Graves and Hashimoto's.

Saying something to the effect: Many people who are diagnosed with Graves, Hashimotos, Diabetes, Colitis,Fibromyalgia and Chronic Fatique to mention a few may also have Celiac disease.

Just a thought.

Excellent thought, Rusla!

That's why I wanted this to be a brainstorming session!

Hugs.

Karen

[Rusla]

My brain is feeling very stormy lately.

[Judyin Philly]

Excellent thought, Rusla!

That's why I wanted this to be a brainstorming session!

Hugs.

Karen

Yes, Karen, totally agree..THANKS

JUDY

[Jen H]

Berneses, I think you bring up a really good point. Teachers have a certain amount of professional development that must be completed in order to be recertified. I know doctors have to pass the medical boards and that some move on to fellowships and specialties, but shouldn't they have professional development opportunites as well?

Just recently I visited my rheumatologist and she cited various studies on the relationship between arthritis and celiac disease. It was pretty clear that she found it interesting and that she had done research in the area. I thought she was a wonderful doctor because her statements were all scientifically based. I've been to several internists who have also said that "celiac disease is rare". It's pretty ironic that many people who have it have yet to be diagnosed.

By the way, Canadian Karen, I think the letter you wrote is wonderful and will definitely inform insurance companies about the amount of money that is wasted in trying to diagnose celiac disease.

[Judyin Philly]

Berneses, I think you bring up a really good point. Teachers have a certain amount of professional development that must be completed in order to be recertified. I know doctors have to pass the medical boards and that some move on to fellowships and specialties, but shouldn't they have professional development opportunites as well?

quote]

Bernese and Jen H

HI, I worked in a medical library for 15 years and part of my resp was to help get tapes, videos etc in the library for CME credits (continuning Medical Education) at least at my hosptial, this was a must. I know if they didn't complete X amount of credits, they'd lose their privilages (or maybe even to keep license valid). I was a serious item. I know when i was bringing them in..I must say i was researching IBS at the time and always looked at the videos or listened to the tapes and I didnt' think alot was a up to date as the technical info I'd get them in searches.. but did give basic info ....So answer your question..I think, in my experience the answer is yes they do have to get extra medical info to keep their license up to date and many go to the big confrences and get credits for that..how good are the in house certifications...I have my doubts on that one. I thought there was some one on the forum who was a dr and one a nurse married to a dr . (if i recall correctly) maybe they can add lite on this issue.

Judy in Philly

[Rusla]

It would be very useful if we could get some corporate sponsorship of some type. Which could get Celiac Associations to get on board with this and send out information packets to schools, companies, restaurants etc. This is also where the Oprah thing would have helped.

Celiac Disease...You or someone you love could have it.

Or something like that.

[Canadian Karen]

If we can get their attention (the insurance industry), make them see how much money is wasted by not screening for celiac disease with a blood test, the absolute clincher to hammer it home how beneficial for them it would be THE TREATMENT!!!! DIET!!! NO MEDICATIONS!!!! There isn't even a pill to take every day for them to have to worry about paying for!!!!! WHAT MORE COULD THEY WANT?????

Once it's laid out for them, they would have to have pretty thick skulls to not figure out how it would benefit them.......

Hugs.

Karen

[floridanative]

I really want to get my letter out to BC/BS next week but I realized I'm not sure where to send it in forms of correct address or dept. My ins. card has only the billing address on it. Since they routinely record phone calls I'm not sure I want to bring attn. to myself right now since I have a postive biopsy as a matter of record and my husbands company is being purchased by another company next month. We have no idea how this will affect our insurance but I can't afford to lose my coverage so I was going to send my letter anonymously. Does anyone know how to look up the major ins. companies addresses or more importantly the address where you would send such a letter? Is it public relations or quality control or what?

[Canadian Karen]

I really want to get my letter out to BC/BS next week but I realized I'm not sure where to send it in forms of correct address or dept. My ins. card has only the billing address on it. Since they routinely record phone calls I'm not sure I want to bring attn. to myself right now since I have a postive biopsy as a matter of record and my husbands company is being purchased by another company next month. We have no idea how this will affect our insurance but I can't afford to lose my coverage so I was going to send my letter anonymously. Does anyone know how to look up the major ins. companies addresses or more importantly the address where you would send such a letter? Is it public relations or quality control or what?

Don't in any way, shape or form jeopardize your own insurance, that's wayyyyy too important. Send it anonymously, or put my name on it, you can e-mail me and I will give you the info to put on the letter.

Hugs!

Karen

[Judyin Philly]

I really want to get my letter out to BC/BS next week but I realized I'm not sure where to send it in forms of correct address or dept. My ins. card has only the billing address on it. Since they routinely record phone calls I'm not sure I want to bring attn. to myself right now since I have a postive biopsy as a matter of record and my husbands company is being purchased by another company next month. We have no idea how this will affect our insurance but I can't afford to lose my coverage so I was going to send my letter anonymously. Does anyone know how to look up the major ins. companies addresses or more importantly the address where you would send such a letter? Is it public relations or quality control or what?

Hi FN

You know this is so sad...This is a real issue...it just seems we are always trying to 'protect' ourselves'

It's nice Karen offered her name. Agree, you must protect your self.

Right now I'm trying to get my CPAP to work. I'm so sleep deprived ... & foggy..to all you who think I can't spell (well even on a good day I can't spee) but that's another issure..or my messages sometimes are abrupt or words left out..... Please forgive me and don't take anything personally if it reads wrong' I'm really doing the best I can and all posts so far have been positive even if it read neg. as i saw in a old post yesterday...

Please let me know i fugured out B/C B/S= Blue cross blue shield...god it's a new day with new brain cells restoring themselves i guess.

Judy in philly

[Canadian Karen]

Hey floridanative, your PM is full...... I tried to PM you....

Hugs.

Karen

[Canadian Karen]

FRIENDLY REMINDER:

To anyone sending out the letters........

DON'T LICK THE ENVELOPES!!!!!

Hugs.

Karen

[Judyin Philly]

FRIENDLY REMINDER:

To anyone sending out the letters........

DON'T LICK THE ENVELOPES!!!!!

Hugs.

Karen

OMG Karen,

Are you kidding me..I thought that was if you were allergic to corn...

I'm getting off line...this just 'tipped me over the edge'

Judy

[Canadian Karen]

Unfortunately, sometimes there is still gluten in the glue they use on envelopes, stamps, etc. Better safe than sorry!

Hugs.

Karen

[floridanative]

Oh my gosh!! Now I have to go through my desk and find that little bottle made for wetting envelopes...ummm....okay here it is. Only my invoice envelopes are not self stick. That gluten is a trickster indeed.

Karen - thanks for telling about my folders. I have cleaned them out now.

[celiac3270]

The lightbulb went off when I was reading Timber4est's post. I think she deserves the credit!

I am looking for my Print Artist Gold that has the software to make letterhead. I am going to make some letterhead for the letter to be sent out on. I am trying to think of a catchy letterhead phrase.

Like: Celiac Disease: Discovering the Poison

or

Celiac Disease - The Undiagnosed Culprit

or

(still thinking........) lol!

Karen

Well, about a catchy letterhead phrase, Dr. Green's new book is called Celiac Disease: A Hidden Epidemic. So as long as it's not in violation of some copyright/trademark law to use that phrase, that would be a good one.

There are basically three levels for increasing awareness among physicians:

1) Doctors themselves -- pretty ineffective, but it's wonderful when you find a GI who puts celiac at the top of the list in testing (such as the one who dx'd me--didn't belong to any celiac centers, but celiac's one of the first things he tests for).

2) Insurance -- it's been discussed extensively, so I have little to add there.

3) Pharmeceutical Industry -- even though few of us would actually take a pill for celiac, there are HUGE awareness benefits if one is made and FDA approved. You would get advertisements, and the pharmeceutical industry, which contributes to a lot of medical education, would make sure doctors knew about celiac, so money could be made off of people taking expensive pills every day. This area is really out of our control, though, unless anyone wants to set up a lab and make the pill .

[Canadian Karen]

My point of view from the pharmaceutical standpoint is that they would not want to help in any way to get Celiac Disease diagnosed, nor would it be in their best interest to sink money into any type of research for a "magic pill" to deglutenize us or to allow us to eat gluten.

The money the pharmaceutical companies would make on a pill for us to take would be a drop in the bucket compared to all the money they make due to celiac complications. If we are diagnosed earlier, thereby avoiding all the complications of years of misdiagnosis (i.e. diabetes, depression, thyroid problems, meds for osteoporosis,etc. etc. etc.) the money they would lose due to lack of all these complications would outweigh the money they would make for one pill (unless they charged an exorbitant amount for it).

I think the more celiac disease is diagnosed properly and promptly, the more ticked off the pharmaceutical companies would become.......

Hugs.

Karen