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Is Irritable Bowel Syndrome Worth America’s Research Dollars?

By: Scott Best

The recent past has leveled a heavy blow to hundreds of thousands of people who suffer from Irritable Bowel Syndrome. Novartis was asked to halt its sales of Zelnorm, at least in the United States. Used mostly by women for the treatment of IBS symptoms, the removal of Zelnorm leaves the pool of available treatments for irritable bowel syndrome virtually empty.

The FDA made the request after review of 29 studies that showed that 0.11% of patients taking Zelnorm experienced cardiovascular ischemic events including: myocardial infarction, stroke, and unstable angina pectoris, compared with 0.01% of patients treated with a placebo. The data, which was reviewed by independent experts, showed that events occurred in 13 out of 11,614 patients treated with Zelnorm/Zelmac (0.11%), compared to one case in 7,031 placebo-treated patients (0.01%). All patients affected had pre-existing cardiovascular disease and/or CV risk factors. Although the numbers are small the FDA deems them statistically significant.

Novartis has suspended the marketing, sales and distribution of Zelnorm in response to the FDA's request, so that public discussion and an Advisory Committee meeting can take place to determine the risks and benefits of this medicine.

So where does that leave those that suffer from IBS? Approximately 12 million Americans alone suffer from some form of Irritable Bowel Syndrome, yet there is still no push by the government at this time to mandate or back any substantial research. It seems to me that it should be more then mildly apparent to those in the research field that IBS poses more then just a minor threat to our national economy by virtue of, if nothing else, lost work days. Not to mention the impact it has on quality of life for those that are afflicted.

To put a total figure on the number of workdays lost due to work absences could run into hundreds of millions of days each year. With that many lost work days by an estimated 12 million US workers, it is bound to have a major impact on the GNP. Although exact figures are not available, it doesn’t take a genius to figure out the loss runs into billions of dollars each and every year.

Yes, it is true that IBS is a non-fatal disorder but the fact is, at least for those that suffer; the symptoms they deal with on a daily basis dramatically diminish their overall health and quality of life.

The US Government set up a website in 2000 for the listing and tracking of federally and industry funded research projects, the list also contains projects funded by foreign governments and companies as well. You can view it at http://www.centerwatch.com

Every IBS sufferer should have a look at the Center Watch website, but if you don’t have the time, I can save you the trouble. There are currently over 1000 research projects in clinical trials for different intestinal diseases and disorders. Worldwide, only 30 of these studies are for Irritable Bowel Syndrome. Of those 30 studies, only one is funded directly by the United States Federal Government and two others have some indirect sponsoring by federal funds. All the rest are sponsored by either pharmaceutical companies or by foreign governments.

Now those figures in and of themselves might seem significant, that is until you put them along side some other figures such as how many other medical research studies there are that draw federal funds. It really is amazing where the money goes.

For comparisons sake, there are 112 studies currently under way for inflammatory bowel diseases, such as Crohn’s Disease and Ulcerative Colitis. Most of these projects were funded by some form of federal money. That kind of gives you an idea where IBS stands in the overall research money picture.

Other, more obscure maladies and diseases seem to get the greatest number of funded studies. Take Intestinal Neoplasms for instance. It has 363 clinical studies, primarily government funded. So what do Intestinal Neoplasms have that Irritable Bowel Syndrome doesn’t? Intestinal Neoplasms can be or might lead to certain types of cancer that possibly could have a certain mortality rate. What is that mortality rate and how many people nationwide or even worldwide are affected?

Those figures I found to be very elusive. Most of the literature I was able to find states it as a rarely encountered clinical condition (to paraphrase information by the National Library of Medicine and the National Institutes of Health). Rare or very uncommon were words most used in the information describing it. I wasn’t able to find any actual figures as to what percentage of the population might be affected. But because it might cause a death, it becomes of great study funding importance.

The more I looked through the Centerwatch.com site, the more frustrated I became. Please don’t get me wrong, I do most whole heartedly believe that life is precious, and that preventing death is of the utmost importance. When I see over 850 studies for leukemia almost totally funded by federal funds, I feel it is money well spent, for a notable and worthy cause fighting a disease that affects humanity in such a horrible manner.

There are tens probably hundreds of thousands of medical research projects being conducted at any given time, that our government sees fit to endorse and in many cases even support. To say which studies have merit and which do not, is probably beyond the scope of any one persons ability to determine. But when I see 49 studies for something like Dermatitis of which half are either directly or indirectly funded with federal funds, it causes me pause.

For me at least it raises the question of why is it that Dermatitis gets more studies and funding then Irritable Bowel Syndrome. In my perception IBS is much more easily perceived as being of consequence by nature of its drain on our national economy not to mention its detriment to the quality of life for sufferers then is Dermatitis. It may be because Dermatitis is in many cases is outwardly visible; affecting the acuity our nation seems to have about beauty.

It amazes me that quality of life seems to be so unimportant in the research field. Three things come to mind in all of this; death, beauty and money (not necessarily in that order). Suffering seems to fall far below these factors. Yes I am biased, because I suffer with Irritable Bowel Syndrome. And it never ceases to amaze me at how something which has such undeniable impact on the lives of millions of people, can slip through the research and funding cracks so easily.

If you suffer from IBS the statistics that I have presented at the very least should concern you. Hopefully they have infuriated you enough to make your voice heard. Irritable Bowel Syndrome doesn’t have a cure; it doesn’t have any known or widely determined beneficial treatment. It doesn’t even have a well defined causation. It doesn’t have a lot of things. What it does have is a lack of support in the medical community for the implementation of studies and the acquisition of funding, even though it is currently one of the most reported medical conditions in the United States today.

Its time for IBS sufferers to stand up and be counted among those that are deserving of consideration when it comes to finding treatments and cures because the statistics on IBS overall are quite staggering. While the effects of IBS don’t kill us, and for the most part are invisible to the world around us, we tend to suffer in silence. Its time for that silence to be broken, its time for our voices to be heard in the halls of Congress, its time for Irritable Bowel Syndrome sufferers to take a stand and yell out to the world that we are worthy of consideration. We have the right to a better quality of life. We deserve to be free of the limitations that IBS places on us. It’s time to stop suffering in silence and take action.

If everyone who suffers from IBS would make one phone call, write one letter, send one email to their state representatives or to their congressman, I can all but guarantee that a resounding positive and immediate action would take place. Millions and millions of letters, emails and phone calls to the offices of our elected officials would not be ignored, could not be ignored.

If the facts presented stirred you even a little, take the time to do one of the three things mentioned; letter, email or phone call. By your voices being heard, collectively we can affect change in the way IBS is viewed in manner of importance relative to its detriment on overall quality of life. If you took the time to read this article, then it was important to you. It’s equally important to you to take action. Don’t wait.

The mission of IBS Help Site is to bring to light any new developments that may have a positive influence for those that suffer from Irritable Bowel Syndrome. If you or someone you know has IBS then it will be worth your time to spend a moment or two and view the site at http://ibshelpsite.com .

Article Source: http://www.healthandwellnesscentral.com

Scott Best is a freelance author in association with ibshelpsite.com He also suffers from IBS and is currently participating in the organization of an Irritable Bowel Syndrome Research project in the hope of bringing relief to IBS sufferers.


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