Patient Beware – Navigating Online Medical Information
Many people ask, “With all the health information online, how can I tell which treatments are worth trying, and which ones aren’t?” As the author of a book about innovative medical treatments many doctors and patients don’t know about*, I want to share some tips about how to separate the wheat from the chaff—i.e., the good from the bad (or at least, the “questionable”)—when it comes to both alternative and conventional treatments.
FIRST, ALTERNATIVE TREATMENTS
Tip #1: If it sounds too good to be true, it probably is!
With alternative treatments, the first rule of thumb is, “If it sounds too good to be true, it probably is.” So, beware of all the “miracle cures,” “miracle potions,” “breakthrough cures,” “biggest discoveries,” and any treatment that “cures all ____s.” (Fill in the blanks: cancers, infections, etc.) Oh, yes, and let’s not forget about all those “one minute cures” out there! Sadly, these quotes are taken from actual websites that are hawking actual “cures.” Remember, no one treatment can cure ALL of anything.
The four treatments I feature in my book, HONEST MEDICINE: Effective, Time-Tested, Inexpensive Treatments for Life-Threatening Diseases, are all promising treatments. But not one of them works for everyone. For instance, one of the treatments, the Ketogenic Diet—a high fat, low carbohydrate, low protein diet for childhood epilepsy—has helped thousands, maybe millions of children since its inception in the 1920s at prestigious institutions such as Johns Hopkins and the Mayo Clinic. In small studies since the 1920s, it has been found to help 60-70% of children who try it. But clearly, it does not help everyone. Yet, for those patients whose seizures are stopped or lessened with this diet, it is a “miracle.” But it is not a “miracle cure,” since it does NOT work for everyone.
The same is true of the other three effective, time-tested, but not “miracle” treatments featured in my book: Low Dose Naltrexone (LDN) for autoimmune diseases; intravenous alpha lipoic acid for end-stage liver disease; and Silverlon for non-healing wounds. Like the Ketogenic Diet, these treatments help many thousands of patients who have used them, and my book contains contributions by several people who have been helped by these treatments. But still, they do NOT help everyone.
Tip #2: Avoid Treatments with Obvious Financial Ties.
Second, it is important to realize that in the US, money is closely tied to healthcare, both conventional and alternative. So, if you want to find a treatment that is worth trying, keep away from those with questionable financial ties. Be wary of a treatment if the only positive information you find has been provided by the doctors who are proponents of the treatment, or by people (doctors or laypeople) who profit from it. These are often thinly veiled testimonials, and it’s easy to spot them. You’ll be able to know which are obvious testimonials because they are too enthusiastic, too “salesy.” Instead, look for solid information provided by third parties— people who have NO “skin in the game.”
Tip #3: Look for Small Studies on the Treatment You’re Considering.
Third, if the treatment is reputable, there may well be small studies available on the government-run PubMed (http://www.ncbi.nlm.nih.gov/pubmed/). Please note that most so-called “alternative” treatments will NOT have large, expensive, class 3, double blind, placebo-controlled studies—the kind the FDA requires to give its approval—since a majority of those studies are conducted by the pharmaceutical companies that stand to profit from them. And pharmaceutical companies are not likely to want to put money into studying natural treatments, or those that are too inexpensive. In HONEST MEDICINE, David Gluck, MD contributes a fascinating chapter in which he explains the Big Pharma-FDA-Trial connection. I’d be happy to send this chapter as a PDF to anyone who writes to me at Julia@HonestMedicine.com. Please put “Dr. Gluck’s chapter” in the subject line.
But many promising, so-called “alternative” treatments do have smaller studies performed on them. For instance, a recent check on PubMed showed numerous studies conducted on the treatments profiled in my book: e.g., 95 on Low Dose Naltrexone, 13 on Silverlon, 1584 on the Ketogenic Diet, and 2017 on alpha lipoic acid.
Some people are surprised when they learn that a large number of nutritional supplements have been put through similar small studies, some conducted in foreign countries, but reputable studies nonetheless. (Try searching for studies on melatonin, magnesium, gaba, and some of the supplements you take. You may be pleasantly surprised!)
Just as there are signs to watch for in the alternative medicine world, there are also signs to watch for with conventional treatments—even in cases of treatments offered by some of our “best” medical institutions, and touted by some well known physicians. The reason for this is that some physicians and medical institutions receive financial support from pharmaceutical and medical device companies, which can lead to conflicts of interest.
So, again: “Patient, beware!”
TIP #1: Watch out for Major Medical Institutions with Financial Ties.
Chances are, if your doctor knows you will want to research your condition or treatment, he or she will most likely steer you to a website or websites that are considered by conventional medical practitioners to be “reputable.”
But often, the websites doctors recommend are also fraught with questionable ties. For example, two of the websites most respected by conventional doctors are those of the Mayo Clinic in Rochester, Minnesota, and MD Anderson Cancer Center in Houston, Texas. But, most doctors are not aware of the financial ties these institutions have to the pharmaceutical and medical device industries—ties that may well cloud the advice provided on their websites.
For instance, a 2014 article titled “Mayo Clinic doctors making millions for private consulting” reveals:
An unprecedented disclosure of payments from drug companies shows that $3.07 million for consulting was paid in 2,388 payments to Rochester-based Mayo Clinic researchers, doctors and hospitals during five months last year.
And a 2012 article titled “MD Anderson’s president DePinho can keep pharmaceutical ties” states:
The University of Texas M.D. Anderson Cancer President Ronald DePinho will be allowed to maintain financial ties with three pharmaceutical companies, the Houston Chronicle reports.
In a letter made available Oct. 23, Dr. Kenneth Shine, the UT System’s vice chancellor for health affairs, granted the waiver for Massachusetts-based companies Aveo Pharmaceuticals, Karyopharm Therapeutics and Metamark Genetics Inc. and said DePinho’s holdings in them will be placed in a blind trust, the Chronicle reports.
There are numerous similar instances of financial ties for many other major medical institutions. You just need to do your research.
TIP #2: Disease-Related Organizations Often Have Financial Ties, too.
When patients are diagnosed with cancer, oncologists are quick to point them to the American Cancer Society website for information on the best treatments.
Not so fast!
If you check the ACS’s site, you’ll see that it has received contributions of over $250,000 each from several pharmaceutical companies, including Abbott Labs, AbbVee, Pfizer, Merck, and Eli Lilly. And other “disease organizations” your doctor recommends may also have similar financial ties. For instance, the National Multiple Sclerosis Society lists as its corporate partners Allergan, Genzyme, Novartis, and Biogen Idec, to name a few. Ditto the American Diabetes Association, whose corporate sponsors include a stunning number of pharmaceutical companies, including AstraZeneca, Eli Lilly, GlaxoSmithKline, Janssen, Merck, Sanofi, and Pfizer.
With pharmaceutical contributors like these, there is a good chance the information on these websites might be influenced by the organizations’ financial ties.
TIP #3: Clinical Trials Have Financial Ties, too.
Add to this the fact that a huge percentage (some estimates range up to 90%) of Phase 3 clinical trials—the ones doctors rely on when prescribing medications—are financed by the pharmaceutical companies that manufacture the drugs they plan to sell and profit from. There is reason to question the results of these trials. See “Big Pharma’s Role in Clinical Trials.”
TIP#4: Learn About Doctors’ Financial Ties.
If you are curious as to whether a doctor you are planning to consult has questionable ties to pharmaceutical or medical device companies, you’ll want to visit one of my favorite websites, “Dollars for Docs”: https://projects.propublica.org/docdollars/ . Even I, who consider myself to be a savvy researcher and patient advocate, was recently helped by this site. A friend recommended that I consult a particular orthopedic physician for a problem I was having. Imagine my surprise when I discovered—thanks to “Dollars for Docs”—that, from August 2013, to December 2014, this enterprising physician had earned $887,819 from a total of 116 companies. And—get this!—“Dollars for Docs” ranked him #5 out of 721 physicians in his specialty in Illinois in the amount of money he earned from these companies. In other words, he got more money from pharmaceutical and medical device companies than 716 other orthopedic physicians in Illinois. This, most probably, is in addition to his “real” salary! And this, apparently, is not of concern to the top medical institution where he practices.
Make no mistake about it. There is an abundance of great health information online. As a matter of fact, most of the contributors to my book found the treatments that saved their lives on the Internet. But there is also information about treatments—both alternative and conventional—that are “too good to be true,” and/or have questionable financial ties. I hope the information I have provided here will help you separate the wheat from the chaff, and in so doing, will help you find treatments that will assist you in your quest for optimum health!
Julia Schopick is a health writer, lecturer, patient advocate and coach, and the author of the award-winning *HONEST MEDICINE: Effective, Time-Tested, Inexpensive Treatments for Life-Threatening Diseases. Through her writings and her blog, HonestMedicine.com, Julia empowers patients to make the best health choices for themselves and their loved ones by teaching them about little-known but promising treatments their doctors may not know about. Julia’s writings on health and medical topics have been featured in American Medical News (AMA), Alternative & Complementary Therapies, the British Medical Journal and the Chicago Sun-Times. Learn more at www.HonestMedicine.com. Write to her at Julia@HonestMedicine.com