Supplement Safety & Consumer Awareness
Written by Jill Osborne, MA - May 2002
Very few IC patients are can easily afford the hundreds of dollars needed for physician visits, medication, and/or diagnostic tests a year. Some patients must save their pennies to travel hundreds of miles (or even cross oceans) to find physicians who can treat them. Still others are forced to choose between food and medical care. One resource for struggling patients are the “Drug Assistance” programs offered by most pharmaceutical companies. These programs n make medications available, at no cost, to low income patients and can help ease their financial burden. But, a new problem is emerging on the internet, a growing number of companies selling expensive treatments or supplements for IC that, upon closer examination, are questionable. We’ve created a list of helpful tips and resources to help you judge the advertising that you encounter
#1 – Just because a company can pay for ads doesn’t mean that the product is effective at treating IC
For a minimum fee, I could place an ad on most major search engines claiming that lemon juice can reduce the symptoms of IC. Does lemon juice treat IC? No! But it serves as a great example. Many companies are trying to get your attention. It makes sense to be on guard. Case in point is a n company currently promoting a sugar pill (D-Mannose) as a treatment for IC with a vague claim that it might control e-coli infections. Yet, we know that IC patients rarely test positive for infection. Their product is a sugar pill, much like the placebo used in some research studies. There is absolutely no clinical evidence that sugar of any type (or lemon juice for that matter) will treat IC. This is, in my opinion, an offensive advertisement.
#2 – Understand the difference between anecdotal information and research studies.
Would you buy a product where the company states that they have no clinical evidence that it works? Of course not, but if it is written cleverly, you might not understand the difference. The D-Mannose web site mentioned above says that they have no clinical evidence that their product works but tease you by saying that they have anecdotal reports that it may have helped someone. Anecdotal reports are meaningless. We don’t know who said it, if they had IC, if they were taking any other treatments, if they still have symptoms, etc. According to the Agency for Health Care Policy and Research, the least reliable information (an “F” score) is anecdotal information, biased testimonials from patients or manufacturers, back-of-the-magazine ads and TV infomercials. Remember, too, that “speculation” means that someone is guessing that it might work. Is it worth your hard earned money or health for a guess?
#3. Learn the research
When you visit any website, make sure that you review the research cited to see if it actually uses their product. Look specifically for clinical research studies that show that the product works with bladder symptoms. A truly credible study is usually published in a peer reviewed medical journal such as the Journal of Urology.
#4. Verify the source of the information and who you are talking with.
Beware of sales representatives pretending to be patients. We’ve had this happen several times in our message boards. They’ll post “I was helped by this. Come visit this web site for more information.” Their intention is to get you to buy! We caught one salesman using three different names to sell their “product.” Ads like this violate the terms of use of the ICN message boards and the spirit of our web site.
#5. Before you buy it, check for quackery.
There’s a wonderful website called Quackwatch that lists most of the health scams currently on the web. It is an informative and useful tool. So, if you have someone tell you to buy colloidal silver for IC, for example, you can find an article about this on the quackwatch web site. Colloidal silver is not believed to be helpful for IC.
It’s no secret that the ICN (and most other IC organizations) has advertisers and/or sponsors. In our case, we’ve worked with AkPharma, Farr Laboratories, Alaven Pharmaceuticals and Desert Harvest. Each one of these companies has made the commitment to conduct a variety of research studies verifying their products usefulness to IC patients. If you visit their web sites, you will find useful, credible information. We are sincerely grateful for their dedication to the IC movement and in supporting our mission.
In conclusion, if a company is trying to sell a product to you, without any research showing that their specific product works with IC, or they try to convince you by saying that they have anecdotal reports that it may have helped some patients, it makes sense to look much more closely at what they are trying to sell. Be a wary consumer. Ask for research studies. If it sounds too good to be true, it likely is too good to be true. We’ll be the first to share the news of that elusive cure for IC. May it be soon! (By Jill Osborne, ICN Founder)
