Misinformation on the NET: Using Hereditary Hemochromatosis as a Model

Randy Steven Alexander
Iron Disorders Institute, Greenville, USA

The Internet offers the most unique and powerful breakthrough in communication since the creation of Morse code. Daily, new users of all ages and ethnicity log on for the first time and witness the incredible power of this remarkable resource. They trace their genealogy through family history databases, order books, computers, almost anything imaginable but more importantly they search for information about their health and this is both hopeful and disturbing. As with anything, but especially this unique tool called the Internet, the possibility to cause harm is ever present. Harm comes in the form of so-called experts, who post medically or scientifically unsubstantiated health information to the NET. Patients do not always know how to distinguish what is valid and reliable and what is junk information. This is very much the case with a little known but very common genetic disorder called hereditary hemochromatosis. For the past decade individuals, universities and advocacy organizations have been posting information about this condition to the NET. Some of what is posted is accurate, helpful and augments the patient-physician relationship.

The rest of it is doing great harm! Misinformation within the context of hemochromatosis can be devastating in the hands of an unknowing patient. This person can be driven to get inappropriately genetically tested and to have spouses and children also unnecessarily genetically tested. In the U.S. especially, these individuals can lose their jobs and insurance as a result of the genetic findings, and yet the genetic test is not even needed to find out if hemochromatosis is present. To make matters worse, some of the hemochromatosis misinformation encourages patients to circumvent their physician and seek diagnosis and treatment through non-medical and often questionable means. This is not only reckless but potentially fatal for a patient who tries to treat hemochromatosis with unconventional and inappropriate methods. To illustrate how hemochromatosis could serve as a model used to address this problem on the Internet, a brief explanation of the condition will be helpful. Hemochromatosis (HHC) is an inherited disorder of iron metabolism and a leading cause of iron overload disease.

Individuals with hemochromatosis absorb more iron from the diet than do those with normal iron metabolism. Iron has no physiological means of excretion except blood loss during menstruation or pregnancy, so over time, the excess iron builds up in vital organs causing them to fail. People with undetected iron overload can die of a heart attack or develop liver cancer; they also can experience other forms of cancer, diabetes, arthritis, depression, infertility or impotence as a result of the excess iron. Hemochromatosis is real: the gene for this disorder, named HFE was discovered in 1996. Hemochromatosis is common; homozygous frequency is an average of 1:250 Caucasians depending upon origin. Among the Scots-Irish population 1:80 has the condition. Hemochromatosis can kill: if not detected and treated, a male can die of a heart attack in his late fifties; a female can also die of a heart attack 15-20 years after her period stops. Detection of iron overload requires simple blood work: fasting serum iron, TIBC and serum ferritin. The results can determine the treatment course. The treatment for hemochromatosis, when iron overload is present, is blood removal with therapeutic phlebotomy. As red blood cells are removed, the body is stimulated to make new red blood cells. Iron is pulled from ferritin, a containment protein present in every tissue of the body. As iron is pulled out of ferritin to make the new red blood cells, the danger of iron overload decreases.

Why are these facts germane to the issue of misinformation on the NET? Because the following erroneous information about hemochromatosis is presently readily available on the NET: Hemochromatosis is a blood disease. Wrong: Hemochromatosis is a metabolic disorder People with hemochromatosis have lots of iron in their blood. Wrong: A unit of blood from an HHC patient contains no more iron than any other blood donor. The iron in HHC patients is contained in ferritin. You must get genetically tested to find out that you have hemochromatosis. Wrong: though the genetic test can tell a person whether or not they have the common mutations of the HFE gene, the genetic test tells them nothing about their iron levels, which is the real concern. If you take IP6 you don't need phlebotomies. Wrong, though a person might slow down the amount of iron being absorbed, nothing except specially formulated pharmaceuticals or blood loss can remove iron from the body.

These are only a few of the misleading statements that are currently on the Internet and patients are being hurt by this and much more information that is in many instances complex. No doubt other health conditions are being improperly represented on the NET as well. The physician patient relationship is degraded when an emotional patient insists that the physician follow some procedure or therapy found on the NET placed there by a person not qualified to counsel. Or worse, the patient disregards the advice of the physician opting for the "easy way out" promised by some unknown "expert". The Internet is a marvelous tool for learning, but management of the information that appears on the NET is uploaded in "Wild West" fashion. HONcode is a good way to identify reputable sites and being an HONcode member is a good start on helping patients and practicing physicians who are not up to date with this example must be able to identify sites with content they can trust as reliable. HONcode might consider appointing monitors among its members to evaluate sites according to accuracy and reliability (information becomes outdated) of content. Iron Disorders Institute knows the reputable sites that provide patient information about iron and would appreciate the responsibility of rating such sites.