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ms_sillyak_screwed

Doctors Vs. Pharmaceutical Companies

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I was just wondering are there any writers in the house? Professional or otherwise?

On St. Patties Day when I was on my local talk radio station taking about green beer and celiac disease. The talk show host brought to my attention something we have all talked about in some form or another here. That is -- getting to the drug manufactures and bringing awareness to the doctors about celiac disease.

The idea is this – How about we find a list of all the drug manufactures or pharmaceutical companies’ names and addresses all around the USA. It’s not that hard to find. Post them all on a thread here. And with it for those of us that aren’t the writer types, the writers in the house will create a letter that will get the point across and make a strong impact. We can post a few versions of a form letter that we can each copy and paste into our word processing programs on our own computers. Each of us fill in the blanks with our stories about or desire to find a cure and what our ailments are and etc... And we then print out a copy to each company, mail them to the research and development department and maybe even CC to the CEO’s in hopes of a cure.

We can pass them around to all our friend and families and ask them to do the same for us. Tell them if they want to stop listening to us complain, or watch us sick, they do something also and can help in our efforts too. They can tell their stories of how sick we get. Also we can make copies and pass them out at our local celiac disease support groups too.

The worst that can happen is we all spend maybe $25.00 on postage stamps stationary and envelopes, and a few hours in front of our computers. It’s a small price to pay. And as a group we can say we really tried… I found a good thread of good brainstorming ideas but nothing was said about the RX companies. We are all a big family here that loves and cares about each other. If we unite in this effort we might help and make a difference.

Remember there are 3 million of us that are DX and millions more that aren’t, YET! If it is true as reported there are 1 out of every 200 people with celiac disease the numbers are a lot greater then we think.

All of us talking to a doctor that has 7 minutes max with each patient isn’t going to listen to us cry to them “WE NEED A CURE!” They aren’t going to take it upon themselves to help. They want us coming back so they make $$$ on us being sick; they don't have an insentive for a cure. Never forget that. But if the drug reps that calls on these docs talks to them about the drugs they are developing and a new treatment or new drugs we will get what we need. And we end up winners! Perhaps we need to come in the back door of the doctors offices and not as we are doing being as the call us 'patients'. We can no longer be patient!

What do you think?

I welcome your thoughts and ideas…

So any writers in the house? Up for the challange? I believe we can find a cure!

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All of us talking to a doctor that has 7 minutes max with each patient isn’t going to listen to us cry to them “WE NEED A CURE!” They aren’t going to take it upon themselves to help. They want us coming back so they make $$$ on us being sick; they don't have an insentive for a cure. Never forget that. But if the drug reps that calls on these docs talks to them about the drugs they are developing and a new treatment or new drugs we will get what we need. And we end up winners! Perhaps we need to come in the back door of the doctors offices and not as we are doing being as the call us 'patients'. We can no longer be patient!

I think in many respects this is a good idea. I do have a comment on two aspects of this though.

First the 'WE NEED A CURE' aspect of this. For one thing there is a 'cure', it is keeping this toxin out of everyones food! Let the people who want to continue eating this poison do so in the form or their baked goods but stop putting it in everything that is made.

The second is that the drug companies are the last place I would look for any help with this. You think doctors stand to loose money, that's nothing compared to what the drug companies stand to loose if we are all diagnosed. I had 5 seperate diagnoses before celiac was finally discovered. For each of those diagnoses I had a minimum of 1 prescription I was taking. By my celiac diagnosis alone the drug companies lost well over $750.00 a month. Most of us prediagnosis are on everything from anti-spasmotics, antidiarreals, anticonstipation, migraine, ADD, psychotropics, antidepressive, pain, sleep, antiacids, steroids the list goes on and on. The drug companies have a lot of $$$$ to loose if we are diagnosed.

The word needs to get out and I think contacting doctors, insurance companies and the government (people like H. Clinton, The head of the FDA, our senators and congressmen and yes even the White House), could help. We need to be vocal and demand that our society stop inadvertantly poisoning large numbers of our people and it will be the money saved in health care that might get some success. So do write and stress the concrete individual saving in pain and money and try to get them to understand the real costs of 'grain dependence' in the United States, the ramifications of not doing so are much more costly in the long run than the 'oil dependance' we hear so much about..

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Oh, Ms. Sillyak, I think it's a brilliant idea--but there are some problems inherent in the medical/pharmaceutical industry that may keep your idea from working.

First of all, THE PHARMACEUTICAL INDUSTRY DOES NOT CARE. Many of us have already been through this with them with autism. They won't admit any link between vaccines and autism, they do their best to alter studies so that they "prove" that there's no link (they took all the kids who were diagnosed with autism out of one study, and then only counted those that were left and said, "See? Vaccines don't cause autism!").

All they want to do is make $$. Instead of admitting that ADD and ADHD (which are considered to be on the autism spectrum) might have something to do with pharmaceuticals, they try to pretend they can correct the problem by selling MORE drugs (ritalin, etc.). Now, I'm sure there are many people who are truly helped by ritalin--but hey, what if this inability to concentrate (think brain fog here) has something to do with--gluten?

Anybody remember hearing talk on the news about a smallpox vaccine (this was right after 9/11)? The pharmaceutical industry managed to push a bill through Congress that gave them a free ticket out of liability for any adverse reactions--ostensibly for the smallpox vaccine, but IT GAVE THEM BLANKET PROTECTION. So when it is finally proved that vaccines had something to do with autism, the pharm industry cannot be sued. Weren't they clever?

And the doctors--well, they have been taught in medical school by the pharmaceutical industry, plus they have a big financial interest in the pharmaceutical industry.

I wish I could come up with a solution, or even an idea half as good as yours, Ms. Sillyak.

Here's a thought: what if it's not just us celiacs? What if everybody, eventually develops this as a result of, I don't know, gluten overload for everybody on a typical Western diet? I wonder about this, because we are seeing more and more celiac symptoms (with or without the diagnosis) in people who are NOT of Scandinavian/English/Irish/Scots/Welsh origin, like my husband, who is of Japanese ancestry, but is a bread-and-cereal addict, and my mom who is Russian-Jewish, but has had many different celiac-type symptoms for her whole life, but not one doctor has EVER said, "celiac" to her or even looked for it. (I plan to talk with her about it tongiht, BTW--wish me luck!)

Think of all the antacids and pepto-bismal that are sold--there's a huge $$ industry right there.

What we need is somebody who knows how to market our message as well as the pharmaceutical industry markets all their products. How many ads do we see on TV and magazines for drugs for very complicated problems (cholesterol, diabetes, even chemo) that should be decided on by someone with intensive medical training (in a perfect system), or at least, someone who has taken organic chemistry! They expect us to rush to the doctor's office begging for the newest drug on the market. Look, they've convinced MILLIONS of people that they NEED cold medicine. Go into any super market or drug store, and you see multiple shelves of cold medications, none of which, by the way, can cure a cold, and none of the ones I ever tried (in my younger, stupider days) EVER made me feel any better. But people not only buy them, they think they need them.

That's effective marketing.

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Yes, I'm afraid I agree wholeheartedly about the big pharmaceuticals having no interest whatsoever in celiac disease research. They are highly motivated to keep the general populace ignorant of the symptoms and dietary treatment of this disease, because they want to keep people believing that they've got IBS, or clinical depression, or fibromyalgia (the list goes on and on) and keep right on buying the treatment drugs. Some docs take kickbacks from the prescriptions they fill out, so they're motivated to refrain from diagnosing celiac.

The guys to go after are in the insurance industry, no question. And we could also let the rice industry in on all this...they'd be happy to inform the world about the dangers of gluten!

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With something like potentially 30% of the population being suspectible to food intolerances to wheat... I'm thinking maybe the human race took a wrong turn a few thousand years ago when it got addicted to gluey grains. In my fantasy I'd like to see it acknowledged that eating wheat is unhealthy and see the human race change its collective diet back to pre-wheat times, rather than try to affect a cure for something we shouldn't be eating. It's like finding a cure for arsenic poisoning... prevention is the best cure!

Then perhaps it would be possible to walk into any restaurant or go to any friend's house and not have to worry if they're serving any arsenic. :P

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First, I am a writer of primarily fiction but I do write other things.

Now, the pharmaceutical companies will want nothing to do with Celiac Disease unless they can make a pill to push on people. I also believe there should be absolutely no wheat incorporated into foods that are not baked goods. MSG is another bad and dangerous additive that is not necessary. The use of wheat as a preservative and a filler will be the death of everyone. Over exposure to many things such as drugs, additives etc., can cause severe adverse effects on people such as life threatening allergies and other problems.

I believe we are the lucky ones, we know what we have to avoid while those who don't know are still being poisoned and suffering.

We need the medical profession to quit sticking their heads up their butts and to think outside the pillbox. Doctors need better training and unfortunately many are now in it for the money. In some countries doctors and lawyers are considered low income because they don’t get the hefty sums of North American doctors. I believe they are probably better doctors because they are not in it for the money. There needs to be a major overhaul of the medical profession.

Another source of problems in Canada we have the Canada Food Guide. This lists things like wheat and dairy that, you should have every day and is supposed to be good for you. Humans are the only animals that drink milk after adulthood. The purpose of dairy is to turn a 300-pound calf into a 1000-pound cow in a year. Obviously it is doing the same to many humans. These food guides should say that wheat and dairy is not good for all people. Many people believe these food guides and think they would not steer them wrong. People don’t realize that these food guides need serious overhauling and to do that we need to wake up the government.

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So, so true. But the battle to get the truth out is truly uphill, because as we've mentioned, the pharmaceutical giants are going to stay quiet about the poisonous properties of gluten, as are many doctors, either due to ignorance or due to financial motivation--big bucks from prescribed meds. But it's not only them who are keeping all of this quiet...I'm convinced that, at least here in Canada, our biggest export money-maker--the wheat industry--is somehow involved in this unrelenting ignorance. Can you imagine the hit this industry would take if all of those ill people realized what's REALLY making them depressed, exhausted, arthritic, infertile, etc., etc.? Is Sifto giving kickbacks to doctors for refraining from diagnosing celiac? Certainly worth exploring......

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The government has tried to prohibit many natural herbal cures and the main reason is because they don't get any kickbacks. Our governments sustain large monetary kickbacks from pharmaceutical companies, they get no financial support for herbal substitutes. It is the same greedy motivation that allows them to keep tobacco companies on the market. It is also the reason they don't present alternative fuels to the public and the price of fuel is so high.

We are fighting greedy giants that rape and pillage the land, at the cost of human lives and suffering. They don't care as long as their fat pockets are filled. That is also why they don't care about homeless people, poor people or anyone not in their greedy circle.

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Here's a thought: what if it's not just us celiacs? What if everybody, eventually develops this as a result of, I don't know, gluten overload for everybody on a typical Western diet? I wonder about this, because we are seeing more and more celiac symptoms (with or without the diagnosis) in people who are NOT of Scandinavian/English/Irish/Scots/Welsh origin, like my husband, who is of Japanese ancestry, but is a bread-and-cereal addict, and my mom who is Russian-Jewish, but has had many different celiac-type symptoms for her whole life, but not one doctor has EVER said, "celiac" to her or even looked for it. (I plan to talk with her about it tongiht, BTW--wish me luck!)

What we need is somebody who knows how to market our message as well as the pharmaceutical industry markets all their products. How many ads do we see on TV and magazines for drugs for very complicated problems (cholesterol, diabetes, even chemo) that should be decided on by someone with intensive medical training (in a perfect system), or at least, someone who has taken organic chemistry! They expect us to rush to the doctor's office begging for the newest drug on the market. Look, they've convinced MILLIONS of people that they NEED cold medicine. Go into any super market or drug store, and you see multiple shelves of cold medications, none of which, by the way, can cure a cold, and none of the ones I ever tried (in my younger, stupider days) EVER made me feel any better. But people not only buy them, they think they need them.

That's effective marketing.

I think your comments are dead-on right when it comes to this. There is absolutely no motivation for the pharmaceuticals to do anything to further our cause...except to come up with a new vaccine or a pill to counteract the effects of gluten. The pill is already invented and about to hit the markets. Personally, I won't be jumping on that bandwagon. If a food substance can be that toxic in its effects, why the heck would I take a pill or get a shot to counteract it? Seems that the goal would be to avoid it completely and work on the food industry to stop putting it in every random product imaginable!

As for raising awareness....in my opinion, this is crucial. But we do need more people to start demanding changes. So what I have been doing is this.....for every friend and acquaintance who complains to me about a chronic illness which I know could be gluten-related, I mention the diet and how it helped my dd and could be related to their problem. Then I offer to help them if they should ever want to try it to see if it helps. I tell them to only commit to four or five days to see if there's a difference. Here is what I've found:

Advanced Psoriatic Arthritis (prognosis: relegated to a wheelchair within 1-3 years. NO hope for reversal of this disease). - Four days on a gluten-free AND allergen-free diet and the person was without any more pain. More than willing to continue the diet. In four weeks, she was off of TEN medications and continues to do well. The diet is now down to being gluten/corn/potato-free and also limited in dairy. This person is now talking to her church group about our diet and how it has saved her life. Her mother is also now on the diet with positive results for her arthritis. Two more people spreading the word.

Type II Diabetes/Thyroid problems - 3 days on the gluten-free diet and vision has improved as well as general sense of well-being. Type I Diabetes runs in her extended family so she will be talking to them about the diet along with putting her family on a version of it.

I am also seeing much success amongst children with failure to thrive, ADD/ADHD and food allergies. Our diet also seems to be helping with a Lupus patient and definitely helps cancer patients as well. I ALWAYS refer people to a nutritionist as well as an MD whom I respect and trust and who is very aware of the prevalence of food related allergies/intolerances. I make it clear that I am not a doctor, but am more than willing to be a part of their support in determining if this can help them.

The point being, we are already doing the diet, why not offer help to individuals who are potentially suffering from gluten overload? I've only been working at this for 6 months and yet there are over a dozen people that I have helped that are now gluten-free and are sticking with it. If there are enough people who experience lasting benefits from going gluten-free then demand for gluten-free options will skyrocket and awareness will surge to the foreground.

There are a lot of people out there who are suffering from the effects of gluten in their diets and just don't know it. And I'm sure that all of us know someone with arthritis, diabetes, thyroid dysfunction, etc.. While it is an awesome ideal to create national awareness and to get big pharma, the food industry, insurance agencies, etc. to pay attention to us celiacs.....at the same time it is in our best interest to reach out to those closer to home and help them too to discover what gluten is doing to them. The word will get out and next thing you know, gluten-free diets will hit the mainstream. And I know that the same people I have been helping are now going out and getting the word out to their family and friends. And to me....there is nothing more satisfying than working with someone to make a positive difference in their life. The excited phone calls or e-mails that I get when the diet is working for them are priceless to me. Many of these people had been incapacitated for up to 10 years with their health issues. And they are always willing to share new info, tips and best of all.....RECIPES. lol!! I'm finding that many of them have multiple food allergies as does my dd and I so recipes are always welcome.

The downside is....these people do have a period of time where they come to grips with their anger at their doctors and the medical community for not having the knowlege to offer this to them as a solution. A few of them were on so many medications and had so many side effects that their lives had become unrecognizable. But, the cost of the diet doesn't phase them at all. At this point, most of them consider it a bargain as they no longer are spending their paychecks on their prescriptions.

Anyway....sorry for rambling. I just wanted to encourage all of you to consider reaching out to those around you who may be suffering from gluten-related problems. If they've been struggling for a while, chances are they'll be receptive to some new ideas. So far, only two people that I have met have not implemented the full diet. Both maintain being partially gluten-free (one is my husband.....lol!! So I know he's being honest about it. He only occasionally slips up now when he's away from home.)

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Great solutions. This absolutely MUST be a grass-roots revolution. We can't fight the drug and medical behemoths unless we are huge in number, and it's gotta start just the way you have done, shayesmom. Something else I am doing is sending a long letter to our three local newspapers, talking about the lack of knowledge about celiac, why the ignorance is likely there, and a rundown of the symptoms. I will next send it to the news director at our local TV station, then the radio hosts of our talk-radio station. Everyone, in all your respective cities, please do the same!

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Well, I'll admit, I'm lazy and I haven't read all of the posts above. I think it's worthwhile to do petitions or something to pharm companies to let them know how many people there are who would love a pill. If they know it will sell they might raise the priority on it. I personally think it is more likely that a university would find something like this because of the $$ factor. If they could find something that helps celiacs but also helps the general public with gastro upset, there is a big market there, however.

Novartis seems more interested in the gastro stuff than others, in my extremely little knowledge on ths subject. They manufacture Zelnorm for IBS and sponsored the IBS study that I participated in and thus was tested for celiac.

They might have better chances finding something to fight all autoimmune diseases - something to help the immune system decide what's really bad and good. That would be great.

I don't think many pharm reps really could do much - they are basically sales people. They would have to be pretty motivated to get exec attn. Would be better off mailing something and mailing something frequently.

Just remember, it's easy to think they should act like nonprofit organizations because they are making things that help people. Many of them give a lot of money and medicine away for that reason. They are for profit though, and just like any other business, they are not necessarily bad guys for wanting to make money and make products for the masses. We'd have to focus on the "this is how many people would spend this much on this product."

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The drug companies have a lot of $$$$ to loose if we are diagnosed.

There's the problem in a nutshell. When you think about all the people out there taking antacids, arthritis pain meds, GI meds....well the list goes on and on so drug companies have no reason to spread the word about Celiac disease. Insurance companies are in my opinion a much better target and Karen already wrote great letters for us to send them.

That said, if the drug companies can figure out a way to market a pill to millions of us, then they'll be all for that. Just like they did with the anti-depressants.

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As shayesmom pointed out, there already is a pill out there, ready for FDA approval, that supposedly calms the lower intestine down (hard to imagine, really) when celiacs consume gluten. But do we really want to do this? I'm with Shayesmom...let's work on attacking the CAUSE of this illness, not the SYMPTOMS. The cause is gluten, and we need enough voices to put heavy pressure on the food industry to stop putting it in virtually all prepared foods. Educate, educate, educate! Shout it from the rooftops, get in touch with the media...The REAL deal on wheat, barley rye and oats....

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Thank you all for taking the time to write and help in putting our heads together on this. I think we might have something here.

Tonight over dinner with my daddyO we went over all of your postings one by one. Earlier today I printed out this thread and this afternoon he read all of it.

First I want to give you a little background on my darling 85-year old daddyO. He is a retired VP from (a billion dollar) major wholesale food company. He is very active and acts 45 not 85, and a type 2 diabetic only since his knee replacement a few years ago. His sister is/was my sweet darling Auntie (the one I fought the doctor and nursing homes that were pumping her filled with gluten and dairy) that died we believe with celiac disease on a feeding tube. My great great grandfather was a southern plantation owner (farmer) lawyer and writer and was a famous man in southern history. And spoke before the agriculture dept in the 1800's. I can't believe I'm going to admit this... On his plantation he grew WHEAT... I can't prove it but believe in my heart the true reason for my bad genetic gene of celiac disease. My other set of grandparents were Italian and both died of cancer, for grandpapa it was colon.

Second you are all right. Each one of you made valid points that have plenty of truths. And some how we, each and every one of us, can make a difference causing a chain reaction of change. Will it happen tomorrow? NO! Will it happen soon, maybe… Maybe not?! But it has taken us hundreds of years to get into this mess. I have not read the book “Dangerous Grains” yet, I think that’s what it is called. I've ordered it and I'm sure it's all true. Grains and soy are killing us as humans (and our domestic pets) weren't ill like the modern man we have become.

There is and argument for every idea and more so the solution we have all raised.

Rusla

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Guest cassidy

It is great that you are trying to get my information out about celiac. Publicity is a great thing and hopefully will help.

Unfortunately, I agree with some of the other posters that pharmaceutical companies aren't the way to go. I work for a pharmaceutical company. They have pipelines of drugs they are interested in exploring for the next 50 years. Some companies specialize in different types of illnesses and wouldn't be interested in branching out. They have huge research departments that are trying to find anything that may be a good drug.

I wonder if there are any brochures that give information to patients about what symptoms to look for. I'm in 10-15 doctors offices every day. If there was literature in the waiting rooms, maybe more patients would ask to be tested. If more patients started asking about it then the doctors may become more educated. I don't know how to find/develop a brochure, but I would think that would be helpful.

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Okay - now you're talking my language - a march on Washington DC is exactly what we need. There is another thread to put together a gluten-free convention and I mentioned having it in Chicago but now I think we could do it in DC and combine it with our protest. Like if we had a three day convention, two days would be seeing speakers and having our gluten-free iron chef competition and the other day would be our march on the mall. This will take a while to plan but getting the rice and pot. growers on board can hopefully speed things up. What do you guys think? DC also has the most free things to do for those that want to make their vacation longer than a weekend.

We need to unite, organize and get the word out about Celiac and gluten intolerance. We also need several thousand people to attend the protest/conference in order to make the national news.

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Ms Sillyak Screwed, (love the name!)

Wow.

I have a lot to digest after your terrific, comprehensive post. I am in Ottawa, Canada, but it doesn't matter much...we can target the same groups everywhere in the world. Our government, in fact, may be much more willing to get to the bottom of this misdiagnosis-and-therefore-unnecessary-drugs-prescribed syndrome, as we have universal health care here and all of our medical testing and most of our related therapies for illnesses are completely covered by the feds. And, most provinces pay for all citizens' prescriptions once they hit 60. Quite a lot of money to be saved there, if a gluten-free diet was the first thing these depressed, infertile, fibromyalgic people tried before accepting the $300.00 prescription. Fellow Canadians, let's chat about who we can address on this one. We've got a new party in power, so the new health minister may be the one. Anyone out there a fed with some knowledge on this? On the other hand, Canadian celiacs face an ENORMOUS wheat industry, perhaps the biggest industry we have...in the States you may not have such a huge powerhouse working against you.

I am currently writing up a letter to send to my insurance company. Maybe there are people who know about the various agricultural industries we want to address (the rice and potato guys). I know we have huge potato exporters on our east coast. We need contact names. Anyone?

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Just wanted to say I ordered the book DANGEROUS GRAINS by James Braly, M.D. and Ron Hoggan, M.A. This evening I began reading and can't put it down. A must read for all. His idea of giving the book to our doctors is a great one. I would like to finish the book to be better educated for our mission.

I'm also thinking of a way to oraganize our campaign. We have some incredibly great idea to begin.

Enough is enough of the 'big guys' controling our lives! Now we will begin to fight for our lives. We need to get started developing our strategy, tactics, and how we can better organize together. The only obstacle (we can over come) I see is that we are all spread out all over the USA and Canada. It on the other hand isn't really and obstacle it's a major plus we can cover more ground in essence. However, I'm not sure we want to do it on this forum for the 'big guys' to loom, stalk and watch our every move and attempt to de-rail us. Any thoughts or ideas how?

You can take control of what will happen not only to your life but our future. Feel free to jump in... to become activsts in action...

I'm going back to read this great book I'm sure you all have read, if not you must...

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I really want to keep this thread and our GOAL alive. I wanted to arm myself with more knowlege and have finished several really good books about celiac disease.

I am creating a web site for us to put our plan into play without the 'big guys' watching our every move. It will be a site that doesn't cost anyone anything, just out of the public view. If you would like to join in our mission for change please send me a message and I will send you the web site address and we can all communicate there. Or post your interest to help here and I'll email you the URL.

If any of you have a different or better idea please share it with us and we will give that a try.

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I'm still here! I've been writing the local papers and news stations with info on celiac, begging someone to do a big investigative feature. So far, I haven't heard back from anyone. I know we've talked about targeting Oprah, but how about some other big American names, especially those in the medical industry...perhaps Dr. Phil? (He may be very interested once he's made aware of all the psychological effects gluten can have on the intolerant--he's a shrink). How about the guys at 60 Minutes? I'm up here in Canada, so it would be a lot easier for you Americans to tap into your own huge media machine. C'mon, guys!!!

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This is a fascinating thread, many interesting ideas and comments.

I think the person to person approach is very effective, especially if it is coming from someone who is well and happy.

I talk to everyone about gluten intolerance now and I can see the connections being made by many people, I know at least three people's diets have changed since talking with me and for me, that is the most effective manifestation of "grass roots" action. It has been my observation that when "grass roots" gets too organized it ceases to be "grass roots". One example is organic food, when we had our organic garden farm there was a great push on for organic farmers to participate in setting up "standards" but once those standards were set up and organics entered the main stream market as a real player then large corporations worked to change those "standards". Now we have "certified" organic produce being sprayed with Auxigro (spelling) which has MSG in it. :angry:

I am not looking for a cure for this, I don't care if they ever come up with a pill and in fact if they did I would probably not take it. I don't trust them to do anything except profit from my suffering.

I would like to see more public awareness. I think the idea for the Oprah show was great but sadly she seems to avoid controversy. Are there any radical talk shows out there?

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