Avoiding Scammers

If you’re strugging with a medical condition, the treatment decisions you make will be based in part on the information you gather from your doctors, family, friends, books and websites. Your job is to take all that information, sort the good from the bad, the credible from the absurd, and make intelligent decisions. Make no mistake about it. Your health and your funds are at stake. Here are three true stories, patients who were taken advantage of, mislead and ultimately lost money because they failed to verify information! You cannot afford to be passive. You must be willing to ask questions, do the research, learn about treatments and be thoughtful about your medical decisions.

• Jenny had IC for a few years and was struggling with pain. A friend suggested that she visit a chiropractor who could miraculously “treat any medical condition.” She said “yes,” drove 90 miles, had an examination by someone completely inexperienced in IC that triggered terrible bladder pain. She then bought hundreds of dollars of useless herbs and vitamins that did not help her condition. IT took months before she realized that she was conned.
• Brian spent $29 buying a book online that said it would share the “cure” IC. It blamed IC on salt, offered a simple low salt diet that he could have printed, for free, from many websites. It also offered no credible proof or research studies that showed that salt caused IC or that a low salt diet could “cure” IC. Yes, salt on a wound hurts. Reducing salt makes sense. But it’s not a cure. He, like hundreds of others, was scammed.
• Nancy was told by a doctor in Colorado that the only treatment for IC was a surgical procedure. She paid thousands of dollars for a medical device to be implanted (i.e. Interstim) that was not FDA approved for IC and suffered from serious surgical complications. When she went to another urologist to discuss her complications, she learned that there were other less expensive and less traumatic treatments that she could have tried that she was not told about.

Finding GOOD Information

Your first line of defense is to gather information from reliable sources… especially when using the web. Why? In the past ten years, we’ve seen it all. Websites that claim that they can cure for your IC if you buy their books. Vitamin distributors eager for new customers who pretend to be patients sharing their success stories. Alternative practitioners sharing wildly successful patient testimonials. And, yes, even well meaning patients who are sincerely trying to help others but are unfortunately passing along poor information. You, the reader, must protect yourself by verifying that the information you have is accurate, factual and credible. Please don’t fall victim to these scammers. Be skeptical.

You must understand that much of the information you might read or hear, whether it be from companies selling you things or patients sharing their success stories, is the least reliable form of information to base your personal medical care on. Here’s a good rating system that you can use to verify the quality of the information you are reading and, more importantly, perhaps relying on to make your medical decisions. Source: Agency for Health Care Policy and Research

Score of A to A- (Most Reliable): Statements are supported by one or more randomized controlled clinical trials, ideally at multiple locations and published in a peer reviewed journal.

Score of B to B-: Statements are supported by a well-designed  and controlled research studies, ideally published in a peer reviewed journal

Score of C to C-: Statements are supported by less valid research studies, such as comparative, correlational or case studies or the opinion of a single experienced expert, such as a physician.

Score of D: An unbiased testimonial that reflects the pros AND cons of any particular approach.

Score of F (Least Reliable):Statements consist of anecdotal information, biased testimonials from patients or manufacturers, back-of-the-magazine paid stories, ads and TV infomercials. The vast majority of websites and several patient written books are “F’s.”

We think it’s important to focus on information that is supported by strong, credible research. If a company has NOT paid out the money to do a study that proves their claim, we suggest you be skeptical. If a website that proclaims a cure is not listing research supporting their claim, be incredulous. If someone says that they can cure IC, ask for proof… hard, written (usually in a medical journal), factual proof.