Demand Change, Work For Change, Or People Will Keep Dying!
As an action network, ironitout.org wants everyone to know about hemochromatosis and learn where the USA stands right now on early diagnosis, treatment and awareness of this deadly but very treatable genetic disease.
Plain and simple, we’re stuck in first gear while people keep suffering and dying. Funding is less than it was 15 years ago, Simple, inexpensive screening exists, but since it is not routine, diagnosis remains largely a catch as catch can proposition. While iron overload has seen some increased awareness thanks to the Iron Disorders Institute and medical education, a recent scientific poll of 1000 adults, commissioned through a data polling firm found that 8 out of 10 people still don’t know what hemochromatosis is. We’re failing to become a household name., We’re failing to drag this disease into the light and see early diagnosis become routine.
To highlight this, we’ve taken a 15 yr old article by the Wallstreet Journal, and added in red sections by our research team to demonstrate what has and has not been accomplished in the years since. How and why we’ve made some little progress. When you read the statistics and research in red you’ll see that there’s a lot left undone. We are not throwing stones, but no one is calling it like it is… the truth is we are losing this battle and it’s time to take a new, action based, aggressive grass roots approach!
WSJ -Iron Overload
By CAROL GENTRY
Updated March 19, 2001 12:01 a.m. Note the date, this article is nearly 15 yrs old.
Feeling tired and achy? Don’t shrug it off as age or stress. Above all, don’t start taking iron. That could make it worse. As of Oct. 2015, there are no warning labels on vitamins and supplements regarding the damage iron can cause to people with hemochromatosis. This needs to change. There’s no widespread campaign to educate pharmacists and the medical community to the risk iron supplements pose to undiagnosed iron overload patients and many diagnosed ones.
Medical researchers are learning that many adults have a genetic mutation that causes their bodies to absorb too much iron. The substance silently builds up in organs and joints until midlife, when the damage begins to reveal itself. Iron can begin loading at any age, the mutation is present at birth, making the need for widespread screening in childhood crucial offer monitoring, head off damage and mitigate treatment costs.
The disease, hereditary hemochromatosis, afflicts more than one million Americans, Closer to 3 million in 2015 with 1.7 million undiagnosed and 1 million diagnosed too late making it the most common genetic disease in North America. It can be detected with an inexpensive blood test, and the damage is preventable, yet most cases are never properly diagnosed. Because we still lack a proper screening program 15 years later!
“Many diseases attributed to middle and old age are actually symptoms of hemochromatosis,” says Sandra Thomas of Daytona Beach, Fla., president of the American Hemochromatosis Society, a support group. “People in their golden years could have a better qualify of life if they were diagnosed and treated.”
Even though hereditary hemochromatosis is common, most doctors never diagnose a single case because they aren’t looking for it, says Vincent J. Felitti, director of the Department of Preventive Medicine for the Kaiser Permanente health plan in San Diego. Since Kaiser-San Diego began screening adults for iron overload three years ago, it has found 500 cases; Dr. Felitti expects to find an additional 1,400 or so among the 500,000 Kaiser Permanente patients in San Diego. Dr. Felitti’s words and recommendations quoted in this article, and his praise of the diagnosis results of the only large population screening program in the country, refute a 2001 Scripps Research Institute Report which was controversial and caused heated debate within the medical community. He was one of four researchers on that flawed study – which recommended against universal screening. Using self-reported questionnaires from patients – known to have low confidence/validity in terms of usable data – and a test group in which many members had already been through phlebotomy treatment, they concluded that while a large number have HH, equal to that of diabetes, it only causes damage in 1 percent or less. In more current large population based studies worldwide, 50 percent of those with the mutation load iron, with 2/3’s developing disease. This places damage/real world health risks at 35 – 45 percent, NOT 1 percent. Unfortunately. The Scripps study has been used for 15 years, and guides many doctor’s actions on diagnosis and treatment even today. It is listed on many physician recommendation websites still. The study discounts the need for screening and falsely broadcast that HH was nothing to worry about, even while the American Medical Association and Academy of Pathology stated that having serum iron and ferritin blood tests back on the routine panel would increase diagnosis 20 fold. Reality Check: A pharmaceutical company is currently trying to develop a pill form treatment for iron overload, clear indication that a large number of the population are at risk. They do not spend time and money developing pills for a disease with a 1 percent illness penetration. The pharmaceutical company quotes at least a 25 percent penetration of illness.
“The fact is, every practitioner in the country sees a case every two or three weeks, only they’re not recognized because they come in disguised as something else, or symptoms haven’t developed yet” Dr. Felitti says. It’s every 9 days in 2015.
Patients come in complaining of chronic fatigue, stomachaches, joint pain, heart palpitations, impotence or depression. After the usual medical workups lead nowhere, puzzled doctors often send the patient home with a prescription for Viagra or Prozac. But the iron, undetected, keeps building up in the organs and joints, leading to arthritis, diabetes, heart arrhythmias, cirrhosis of the liver and certain cancers. Iron tests put back on the CBC panel and education in the medical community/low evidence threshold for suspecting iron overload would clear up this “mystery” and save lives through early diagnosis.
The irony is that both testing and treatment for iron overload are simple. A “transferrin saturation” test that shows whether excess iron is being absorbed adds only a few dollars to the cost of a routine blood test, Dr. Felitti says. A genetic test that identifies 85% of hereditary hemochromatosis patients is available, and though it isn’t necessary for diagnosis or treatment, it’s useful in helping relatives learn they have the disease before they develop symptoms. The 1998 decision to unbundle serum iron and ferritin from the routine CBC panel closed a window for early detection/ diagnosis. Putting these tests back makes medical sense and would not only increase detection of iron overload, but Wilson’s disease, anemia, cirrhosis, diabetes and Rheumatoid arthritis. Far from a cost savings the move increased healthcare costs. Before unbundling a blood chemistry panel that included iron tests and a complete blood count cost $100. After unbundling, the same set of tests done separately cost patients $400. The cost savings argument for unbundling is moot. Doctor awareness has been on the rise since 2001. If overworked doctors had ferritin tests back on the initial blood test screening it would cue them to test for HH.
Treatment is simple: regular blood draws. When serious iron overload cases are first caught, experts say, the patient may need to give up one or two units of blood a week. Once the iron level drops to normal, blood is drawn about once every three months. In May of 2015, ironitout.org with other advocates were successful in getting the FDA to lift all waivers and variances/restrictions on HH blood donations for transfusion. Now it is up to us to get hospitals, blood banks and the Red Cross to begin taking the blood rather than throwing it away.
Hemochromatosis can be the result of environmental factors — it often occurs in Africa from cooking in iron pots — but the hereditary form of the disease is more common in Europe and the U.S., with a prevalence of about four cases per 1,000. Fully 12% of the population are carriers of one, but not both copies, of the defective gene necessary to develop the disease. Carriers can and do load iron, so the population at risk is 30 million. They should be tested for iron overload/ferritin count annually. Currently, many doctors tell carriers “there’s nothing to worry about and take no additional steps.”
The disease isn’t caused by eating iron-rich foods, but by over-absorbing the iron in a normal diet. Iron overload occurs because the defective gene interferes with the normal function of the intestinal lining and allows too much iron to pass through to the bloodstream, where it is carried to certain organs that are sensitive to it, especially the liver. The iron causes inflammation, which damages the organs.
Many patients go for years thinking their symptoms are due to stress. Harry Kieffer of Cordele, Ga., got that medical assessment when he saw his doctor due to fatigue, joint pain, irregular heartbeat and migraines. It was easy to believe; as production manager for a new building-products plant, he was working 60 to 80 hours a week. “During this whole time, we took stress-formula vitamins with iron,” says Mr. Kieffer’s wife, Chris. “We thought we were being good to ourselves, but were compounding the problem.”
The American Academy of Pathology in 1996 called for doctors and hospitals to run iron-status tests on all new patients, but there has been little movement in that direction. Officials at the Centers for Disease Control and Prevention say there must be better safeguards in place to prevent discrimination by insurance companies before widespread screening can begin. Safeguards are in place. Since 2001 countless deaths and chronic illnesses could have been prevented. Hospitals ran those very tests prior to 1998 with no issues. The tests were removed for questionable financial and political reasons, not medical ones. It’s criminal and barbaric that these tests are not standard. We need a full, grass roots campaign directed at cms.gov and medicare, to get the tests back on the CBC panel.
ironitout.org is leading that campaign.
But they say anyone who shows symptoms, or has a relative with the disease, should ask for a test. 75 percent of people with HH don’t show symptoms and of those with symptoms, 80 percent are misdiagnosed. You can’t ask the patient to be the doctor… This is why iron overload remains a silent killer today. Only standard screening with ferriten tests and a massive awareness campaign coupled with doctors pushing for early diagnosis will work.
ironitout.org action projects include:
- Grassroots campaign to get ferritin tests back on CBC panel – including petition, congressional pressure, email campaign to panel gatekeepers, media PSA’s and public out cry.
- Campaign to get hospitals, blood banks and red Cross taking every pint of HH blood donated for transfusion. In the vein not down the drain.
Here’s how you can support the projects: