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How Do We Get The Word Out To The Doctors?
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Being the one who started the 'Let's get on Oprah' thread, I'm all about getting the word out about Celiac disease. I planned to continue the Oprah (or other media) campaign regardless of my test results since I do not think what so many of you had to go through is acceptable in any way.

However, I think we face a larger dilema here. I did hear about Celiac from my first GI but the hemo doc and second GI I went too treated me like a hypochondriac...and the first doc told me how extremely rare Celiac was. So even if we get the word out and discussed in the mainstream media more often, what good will it do unless the doctors are also better informed? I for one don't think even if we got the story on Oprah and Dateline that most doctors will listen to the people who go in with questions about Celiac and they will be subject to the horror stories you have experienced all over again. Ideas anyone? I'm perplexed regarding this one for sure.

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You have a good point. The key to getting more people diagnosed earlier has to start with the medical professionals being better informed. The mere fact that we have a disease that affects 1 in 133 Americans that takes, on average, 11 years to be diagnosed says volumes.

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I think that physician education is the answer. I know from experience that physicians don't want to be told ANYTHING, but if the information is proposed in the form of a question, then they think it's their idea. (very passive-aggressive, but works a lot of the time). I take in the information that I have gathered, I make sure that it is from a reliable source, is appropriate, and often highlight just the two sentences that they want to see. Then I ask if they would consider . . . . . it often works. A couple of times, it has sparked conversation with regard to the same illness/ disease process, and then they are even more receptive. I know that most of the time physicians don't like educated patients because they don't want to appear less knowledgeable than them, but in the right scenario, educating physicians is sometimes even easy.

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I've been working to educate my daughter's doctors (she has many since she is a heart patient). I find info that is backefd up in med journals so that it carries more weight. One good one I found is at http://www.celiaccenter.org/Articles/celiacgastro.pdf

It's doctor speak for what we talk about here. I have approached it from the perspective of trying to help others not have to fight so hard to learn what I finally did. So far they've been receptive. I think we just have to tell them. I'm going to offer to put together a packet for the cardiology team at Vanderbilt when Meg goes back for her next sugery. We'll see how that goes over.......but I've got to try!

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Below is quote from Timber4est:

If you share with them a way they can save a few bucks, they jump right on it, that is just how they are. They want to keep costs down on their end and true, they raise the rates to us while they lower the rates to doctors and hospitals as far as what they are willing to pay. However, if you show them just how much you can save them in the long run, they will do it AND raise the rates to earn more money.

Lucky for me, I have had the same insurance company for over 15 years. After I was diagnosed with Celiac, one of the first things I did was to request an accounting history on just me. When it arrived, I was shocked as they themselves have paid out just over $250,000 in the past six years alone. This does not include what I have paid out of my pocket. With the exception of one surgery due to a rock climbing injury, $28,000, the rest is all in mis-diagnoses of Celiac. Treating all my symptoms, not the cause.

After I have learned more about Celiac and ask the doctor who found it if he would be willing to speak with my insurance company (yes, he is an owned doctor of theirs), I fully intend on speaking with the board of directors, or at least trying to. They could have saved a minimum of $200,000 on me alone in the past 6 years if the diagnoses had been correct in the beginning.

Seems to me there's your answer right there. Who has more power, money and resources to get the message out to the doctors than the insurance companies?

If we could open up their eyes (insurance companies) to the vast amount of money wasted due to years of misdiagnosis, and that it all could have been avoided by some knowledge by doctors and a simple blood test, I think they would be our greatest advocate.

Instead of vilifying the insurance industry, let's use them, work with them. The people who arrange these Celiac Conferences, invite some insurance representatives. Maybe get a group of 10 people together, have them ALL ask for their total tally before diagnosis happened, add it all up and present it to these insurance representatives, saying: "This amount ($__________), could have all been avoided if doctors were made more aware of celiac disease and had administered a simple blood test." Turn those years of pain, suffering and anger into something positive.

JMHO.

Have a wonderful day, everyone. Gone back to fishin'.

Karen

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Karen is absolutely right! I myself don't have the energy to even call BS/BS and be on hold for thirty minutes to see who I should write. I feel good, just overwhelmed trying to change my whole life on a dime. I'm not shirking my responsibilites here, just saying that even though I started this thread (mostly to help you who had it so much worse than me), I don't even have time to visit the board much right now. That said, when I feel like I can think about doing something besides learning a million things about living gluten free, I'm going to at least start with my own insurance company. They are the cheapest s.o.b.'s on earth so I think they'll jump at the chance to save a freakin' penny!

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It would be interesting to approach the insurance companies about this. Money speaks volumes to companies and the health in this country is just getting worse and worse.

I wonder though- after becoming a doctor, are doctors REQUIRED to continue attending professional development? I know as a teacher I had to do at least 60 hours a year. So, granted, their conferences may be more of a vacaction than teacher conferences, but I wonder if it's worth lobbying for continued education of doctors.

I'm thinking of the second GI I went to. He wouldn't even test me for Celiac's because it was "really rare." I also have acid reflux and to check my esophagus he did the upper GI series (with barium). When I got to GI #3 who at least believed that Celiac's was not rare, he was horrified at how outdated GI #2's practice was. He said that most GI's hadn't used the upper GI with barium for at least ten years- they were all doing endoscopies to check on the status of patients with esophageal problems. GI #2 is about 15-20 years older than GI #3. So my question is, where's the continuing education and professional development for doctors? That might be one way to get them edu-macated.

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I wonder what would happen if we all collectively sent the below to not only our own insurance companies, but any others in our area also.

This is just a draft of what I have in mind:

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……….

It could be done. If we really want to make a difference, why don't we take advantage of the insurance industry's vast resources. If we can open their eyes and make them realize how advantageous it would be for them, that would be our easiest avenue to take to reach the doctors.

JMHO.

Karen

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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

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However, insurance companies would rather no one have any problems or know about this, that way they don't have to put out the bucks, just sit back and rake in the cash.

It is hard to educate doctors when many in their minds think such things as Celiac, hypoglycemia and other medical issues don't exist and are bunk. First one has to get the doctors to listen that, in itself is a chore.

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Great letter Karen! That was excellent. I plan to plagiarize and send it out. Glad to have you back, woman! Beverly

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I think it is a great idea and if only one insurance company listens, maybe others would start to also.

Another thing that might be tried is that a Celiac Disease association should send out a pamphlet to every doctor who is registered in the US and to every medical collage. It should be short and to the point with .coms that they could go to for more information.

I am sorry if I have mispelled things but my eyes are all blurry from heavy dialation for an emergency eye exam. This morning my eyesight went so blurry that it was almost nothing in one eye. They were worried that I had a detached retina (went through that years ago) and thus the emergency. It was only my dry eyes getting much worse from the Scleroderma - isn't a LATE diagnosis of Celiac wonderful :ph34r:

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I am just not sure insurance companies are our best bet. Aren't the people that work in them making ALOT of money and most are clueless about the actual care of the patient. I could be wrong and if it work it is a great idea.

I think it would be great though to have the doctors more educated. THe problem is older doctors that don't know how common celiac is now. If there was even some way to send out mass pamphlets to doctors about the changes in celiac. Medical students are learning SO much, but this reallly needs to be focused on three or four groups, OB/GYNS, Family medicine, pediatric medicine, internal medicine, dermatology, and Gastroenterology. They need to know to test any one with IBS symptoms, Anemia, diarhea, constipation, depression, recurrent miscarriages, excessive gas and bloating, weight loss, even recurrent candida, diabetes, etc.(I know many more I am sure I missed).

THe doctors need to know and I am not sure who is in charge of this. I will have to ask my husband, but there has to be something sent out. They do need to have continuing education. Sad part is though, is it required for all docs or do just the one's that WANT to stay educated go to them.

Mandatory testing would really be the ultimate progress.

Monica

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Great letter Karen! That was excellent. I plan to plagiarize and send it out. Glad to have you back, woman! Beverly

You are free to plagiarize away!

p.s. I'm still in my fishing hut......... ;) but this thread was just too important to ignore.......

Hugs.

Karen

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Karen - you are wonderful! I will copy your letter myself too if you don't mind. I have put this on my to do list for next Monday. And for example to those who think insurance companies won't care, try and mention any personal experiences you had with the docs that you can show costs them more money already. I had two Celiac panels run and didn't even know it b/c 1st GI didn't bother to send a copy to my pcp. So when I called to ask if they had run such a panel, nurse rachet told me I didn't need any more blood tests, just to set up the endoscopy and she hung up on me! So I went to a hemo doc and he ran the panel again which in my opinion was a total waste of money for the ins. company. Trust me - if we can give examples (most of you have way more to exploit than I do) of how much money is being wasted because docs don't know about Celiac, well they'll start listening real quick. Remember insurance companies don't care about people - they care about money and that's what we have to appeal to.

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I think these are all great ideas but I think its more of a problem with doctors having too much on their plates. The doctors ARE aware of Celiac....they're just not testing for it. My doctor was aware of it....he told me it was on their top 10 list. Top 10 diseases that they are misdiagnosing. Even with that knowledge he never mentioned it to me once. People with Celiac usually have multiple symptoms and they are not always GI symptoms. The doctors simply dont have time to figure it out. They run some tests and when they cant come up with anything they just treat the symptoms. Thats the way it works. They are under too much pressure and are nearly always behind schedule. My OBGYN told me the physicians often get depression and take antidepressants because they have too much stress from having to fit a certain amount of patients into one workday. How can they truelly help anyone in the amount of time they're given with each patient? I think something should be done about that. If the doctors werent under so much stress they might be capable of actually helping people because they would have the time to *listen*.

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But if the doctors are "owned" by the insurance companies, and the insurance companies order them to start testing for this more, then they would have no choice..... I really think the insurance company angle is the best way to tackle this. If we can get them to understand how much of their money is "flushed down the toilet" (pardon the pun) due to this blood test not being done, they would crack down on "their" doctors and start getting this disease diagnosed alot sooner.

Logically, insurance companies make their money by charging the premiums that they do. They lose money by all the medical payouts they have to make. I would think they would jump at the change to reduce the latter.

For further incentive on our part: Insurance company involvement = doctors testing more for celiac = more celiacs being diagnosed = more gluten free food in demand = better selection and cheaper prices.

Karen

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For further incentive on our part: Insurance company involvement = doctors testing more for celiac = more celiacs being diagnosed = more gluten free food in demand = better selection and cheaper prices.

I'm all for it!

Will write a letter....this would be more beneficial than getting on Oprah. Its not gonna do any good for a bunch of people to identify with Celiac if the doctors arent going to do their part in recognizing symptoms and ordering the proper tests.

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I plan on sending this letter out to as many insurance companies and Canadian Celiac Disease Association brances as possible......

Even if it is just a little, tiny, nudge towards better diagnosis, it's better than doing nothing......

Karen

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I agree with Karen. I DO remember when insurance companies did not pay for routine mamagrams. That denial could have save the companies billions of money in post dig. for breast cancer and where that may lead to.

Slamming the Health Insurance Association with information from us would/could lead to alot of change. They are the ones that lobby Congress and that is where things will change. (Karen, don't know how Canada deals with this) We all need to be lobbiest. I am sure that the Celiac Sprue Accociation is doing a good job. We can contact them and see where we can help with this issue. We DO have our own lobby group. I have joined the CSA and would suggest that others do and see where we can help. Contacting our local Congressional Legislature would also be helpful. I do think you need to go to the top. Hey, we as citizens have given rights to be represented and our concern heard.

Lisa

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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

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I'm all for it!

Will write a letter....this would be more beneficial than getting on Oprah. Its not gonna do any good for a bunch of people to identify with Celiac if the doctors arent going to do their part in recognizing symptoms and ordering the proper tests.

Eactly Rachel! That's why I started this post. Like I said before, if everyone who could have Celiac went in to ask to get tested and the docs were the same as mine and more importantly like the rest of your docs...well then all the publicity in the world wouldn't benefit anyone. My GI told me flat out I couldn't have it and well...he was very wrong in the end.

I'd like to nominate Karen for 'smartest Celiac of the week' for her brilliant idea/letter to the insurance companies. Can I get someone to second that??!

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Karen,

Your fishing trip is OVER!!!!!!!!! :D:D:D

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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

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I defer to Canadian Karen....I change my nomination to Timber4est as the 'smartest Celiac of the week'. I did not catch that first line above the guote Karen. I like your idea to put a name on the letterhead. I'm going to put that text really obnoxiously bold on the top and bottom of the page so whoever reads it

won't forget it.

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