Dying To Be Detected

19fsvzThe world’s most common deadly treatable genetic disorder, hereditary hemochromatosis, is also the least detected, diagnosed and treated in time to prevent chronic illnesses and premature dead.

Not through lack of knowledge, but willful negligence on the part of a profit driven medical system.

Why in 2016 are people getting ill and dying without even knowing what hurt or killed them?

Why do death certificates list cancer, heart attack, cirrhosis when HH was what triggered their demise?

Why, when a simple, inexpensive iron panel could be added back on routine blood work does it remain a hit or miss, doctor’s best judgement call? sign petition here

Why, when the American Medical Association’s own study about iron panel test screening projects a 20 fold increase in detection, leading to 600,000 people annually, being monitored and treated in time to prevent 121 downstream chronic and deadly illnesses in the USA alone – at a cost savings of 500 billion dollars over the next two decades – do tests remain off routine blood work?

In a word; money.


1.There’s no profits in a proven, drug free treatment – therapeutic phlebotomy.

2. There’s a huge profit loss in preventing up to 20 percent of 121 chronic and deadly illnesses, all of which have drug treatments and medical procedures generating billions of dollars in revenues for publicly traded companies in a for profit medical system.


3. There’s no loud, insistent entity on the side of HH detection and treatment… until now. www.ironitout.org  sign petition here: sign petition here








Everyone who becomes aware of these facts understands it’s not a medical mystery, but a lack of political will to do the right thing in the face of huge profits, blood money made on the backs of sick and dying people, who have names and dreams and families …. and futures if we rise up together, right this wrong and drag this disorder out of the shadows.


Help us stop criminals in suits marking your family and friends for suffering and death just so they can maximize their stock prices.

Sign and share our petition to put iron panel tests back on routine blood work. sign petition here

Watch and share this PSA about HH and the petition project:

And here’s  list of 121 illnesses and conditions related to HFE gene mutations so you can see what we are trying to prevent:

Acanthosis Nigricans
Acute Leukemia
Acute Lymphoblastic Leukemia
Acute Myeloid Leukemia
Acute Myocardial Infarction
Adrenocortical Insufficiency
Alzheimer’s Disease
Alzheimer Disease Type 2
Amyotrophic Lateral Sclerosis
Aplastic Anemia
Artery Disease
Ataxia Neuropathy Spectrum
Atherosclerosis Breast and Colorectal Cancer
Beta Thalassemia
Breast Cancer
Cervical Cancer
Childhood Leukemia
Chronic Myeloproliferative Disease
Chronic Venous Leg Ulcers
Cluster Headache
Colon Cancer
Common Variable Immunodeficiency
Colorectal Cancer
Cystic Fibrosis
Deficiency Anemia
Diabetes Mellitus
Diabetic Nephropathy
Dilated Cardiomyopathy
Fatty Liver Disease
Friedreich Ataxia
Gastric Cancer
Hemochromatosis Type 1
Hemochromatosis, Type 2
Hemophilic Arthropathy
Hepatitis B
Hepatitis B Virus Infection
Hepatitis C
Hepatitis C Virus
Hepatocellular Carcinoma
Hereditary Hemochromatosis – juvenile
Hereditary Spherocytosis
HFE Associated Hereditary Hemochromatosis
HFE Hemochromatosis
HFE Hemochromatosis, Modifier of
Hyperferritinemia Cataract Syndrome
Insulin Resistance
Iron Deficiency Anemia
Iron Metabolism Disease
Kaposi’s Sarcoma
Kidney Disease
Lateral Sclerosis
Lead Poisoning
Liver Cirrhosis
Liver Disease
Lymphoblastic Leukemia
Male Infertility
Microcytic Anemia
Microvascular Complications of Diabetes 7
Multiple Sclerosis
Myeloid Leukemia
Myelodysplastic Syndromes
Myocardial Infarction
Nonalcoholic Steatohepatitis
Ovarian Cancer
Parkinson’s Disease
Pearson Syndrome
Peripheral Artery Disease
Peripheral Neuropathy
Porphyria Cutanea Tarda
Porphyria Polycystic Ovary Syndrome
Pyruvate Kinase Deficiency
Rheumatic Disease
Rheumatoid Arthritis
Schizoaffective Disorder
Sickle Cell Disease
Syndromic Diarrhea
Type 2 Diabetes Mellitus
Variegate Porphyria
Venous Thromboembolism
Viral Hepatitis
Wilson Disease
X-Linked Sideroblastic Anemia



Athletes And Iron Overload – A Population At Higher Risk?

Hemochromatosis is the most common deadly genetic disorder in the world.


1 in 9 are affected. Having the mutations increases one’s risk of storing excess iron in tissues and organs. Iron overload is the  trigger for a dozen cancers, chronic and deadly illnesses including heart attacks, liver disease, liver and heart failure, arthritis, diabetes. It has one of the lowest diagnosis rates in the world with less than 8 percent discovering they have it in time to treat properly, or at all.

But are athletes at greater risk of iron overload than the general population?


A number of studies have concluded YES, they are.

But Why?

1. Iron Supplements

Although numerous science based studies have determined it generally does not improve performance, iron is often used by elite athletes. This trend has been on the rise for decades, promoted by the vitamin industry.  Publicity about it’s use has influenced mid-range athletes and the larger population of citizen athletes training for charity runs, spartan races, marathons, teams of all sports and cycling clubs.

The physiologic changes induced by exercise can mimic iron deficiency and decrease hemoglobin and ferritin concentrations over the short term. Determination of serum transferrin concentrations identify true iron deficiency, but too many athletes simply take iron pills or multivitamins with large doses of iron without being tested for real deficiency, overload or genetic mutations… because they heard it was good for them and might give them an edge.


Since HH has one of the lowest diagnosis rates in the world, with less that 8 percent discovering they have it in time to treat, or at all, a large segment of athletes are playing russian roulette every time they take iron pills.

In contrast, increased iron stores in the body are a frequent finding in elite athletes who have used long-term iron supplementation. For example,  elite runners have increased intestinal blood loss, but can be compensated by enhanced absorption of dietary iron i.e eating a healthy diet of food. Taking iron pills and supplements only increases the risk of iron overload (especially in athletes with undiagnosed hereditary hemochromatosis) without improving performance.

2. More than a casual relationship between elite athletes and a higher prevalence of hereditary hemochromatosis than general population has been established. 7978390

No less than four independent scientific studies in Britain, France, Spain and Australia have reached similar conclusions – athletes test for HH at higher rates than general population, not due to supplements, but at the genetic level.  The Madrid study findings indicate a high prevalence of HFE gene mutations in highly trained professional athletes populations (49.2%) compared with sedentary controls (33.5%). In a study of French athletes across several sports the primary conclusions were that while 27% of the French population is heterozygous (carriers) for mutations in this gene, 80% of the French athletes who won international competitions in rowing, Nordic skiing, running and judo displayed mutations in one or more allele of HFE, thus demonstrating the existence of a favorable phenotype linked to this heterozygosity. Additional conclusions from these studies included:

A. The frequency of HFE mutations in elite athletes is up to twice as high as in controls. (across all the studies)

B. In the international podium group from the Fench study, 80% of athletes had mutations in the HFE gene.

C. The HFE mutations are favorable to high level performance in athletes.

D. Heterozygous HFE mutations could be associated with a favorable phenotype.

3. Athletes get tested more frequently and thoroughly for their physical condition than do the general population.  del_65461_medium1

A strong argument, backed by data from three medical system surveys, indicates one reason more athletes know they have HH than do in the general population – and get treatment – is because they schedule more physicals, or are mandated to take them by sponsoring organizations, request more tests be run and are viewed by health professionals as stronger candidates for specific panels and tests outside of routine blood work. Because they present less factors such as drinking, smoking, poor diet, lack of activity, doctors look beyond presenting symptoms for a source.

The Take Away:

  1. While more studies need to be done regarding the correlation between elite performance and prevalence of gene mutations, athletes of all stripes should NOT take iron supplements and vitamins with iron in them.
  2. Highlights the need for widespread, routine iron panel testing for all populations to catch this disorder and it’s damaging effects early and often. Sign our petition to make those tests routine again  sign petition here

Two videos of world class athletes who discovered they have HH and were in iron overload:

Only A Revolution Stops Hemochromatosis Body Count! Will You Help?

Time to get off the sidelines.   Time to put resources into this battle!


We don’t need millions spent on HH research. We already know the how, what and whys of this disorder.

We don’t need millions spent on finding a wonder drug. We have a safe, effective drug free treatment right now.

We don’t need thoughts and wishes. Only loud, sustained voices and specific actions will bring about awareness and positive change.

We don’t need bad research continuing to set current policies. HH is NOT rare. It’s the most common deadly genetic disease in the world, 1 in 3 with HH will get sick.


We need a movement that understands the forces we are up against and sounds the alarm and pushes solutions.

It’s time to get loud and mad and raise all manner of educated hell until everyone knows what HH (iron overload) is,  why  it’s so dangerous, but easy to diagnose, treat if caught in time and why it matters to everyone.


Why you should care:

HH awareness  = Cancer Prevention

HH = Heart Attack Prevention

HH= Alzheimer Prevention

HH = Cirrhosis Prevention

HH= Diabetes Prevention

HH= Arthritis Prevention

20 percent of two dozen cancers, chronic and deadly illness could be prevented at their source which is HH!

Silence = Death,

Asking Politely = Death,

Waiting And Hoping = Death


HH needs a champion, desperately – a group who will call it like it is:

March into battle.

Raise Awareness

Exact Specific Changes

Offer facts, best medical practices.

Fight those profiting by marginalizing this disorder.

Not take NO for an answer!

www.ironitout.org is that group.

A not for profit action network based in the USA but working for worldwide awareness of HH and raising funds to spend directly on 3 action projects:

  1. Screening/testing for HH through simple blood and iron panels. Demand this become routine/standard worldwide using this petition  and reaching out to media, medical groups, insurance companies AMA, CDC etc. to demand change now!
  2. Publicize disorder/increase overall awareness using series of PSA’s on radio, Network TV, Cable and Social Media. Create an Ice Bucket Type Challenge Campaign size momentum.
  3. Educate Medical Community worldwide to scope, penetration of disorder and best medical practices including the end to throwing away denotable HH blood.

* Sign here:  petition

Here’s our PSA for network, cable, radio, social media.  When we raise $100,000, media entity partners will donate an additional $400,000 worth of ad time. Help us fund PSA distribution. Donate here: www.ironitout.org/support

Thank You for taking a stand with us!

Profits Over People: Deadly Impacts Of Hemochromatosis Hidden For Decades

Book excerpt from The Heaviest Metal (Pub. Date Winter 2017) By Joe Kurmaskie, bestselling author, award winning AP journalist/editor.

Profits Over People

Fueled by Greed, Flawed Research, Outdated Information and Misdiagnosis,      Profit Driven Medicine Left Millions With Hemochromatosis to Suffer and Die – Pocketing Billions Treating Dozens of Resulting Illnesses.


Medically speaking, Hereditary Hemochromatosis is no mystery, it’s a very simple disorder to understand, diagnose and treat.

A genetic mutation causes excess iron to store in organs and tissues.

When stored iron reaches toxic levels it causes disease, cancer, organ failures, chronic illnesses, death.

HH triggers up to 20 percent of dozens of cancers and chronic illnesses.

Stored iron is removed safely/inexpensively through phlebotomies (blood donation). A drug free treatment.

Early diagnosis, monitoring and treatment offers full life expectancy.

Simple, inexpensive iron panel tests, and a genetic test have been available for decades – yet not routine.


So why is hemochromatosis, the most common, deadly genetic disorder on the planet, one of the top five undiagnosed/misdiagnosed disorders worldwide, orphaned and overlooked? A disorder with numbers on par with diabetes should not be virtually unknown. In short, a profit based system has placed maximizing financial returns ahead of best medical practices.






One small, biased and widely disputed  Scripps Research Study done from 1995-1997 set hemochromatosis policy for decades to come. It concluded that while HH is a very common disorder, people rarely get sick from it. (1 percent or less)

Problems with Study:

1. The study group drew from one specific population enrolled in a strong, preventative healthcare program rather than a large, diverse population based study.

2. It included subjects who’d already received 18-20 phlebotomy treatments. (Imagine including subjects who had gone through successful chemo to determine if they currently showed signs of cancer.)

3. Eliminated 42 diagnosed but untreated HH patients from the study.

4. A significant portion of the results were obtained through self reporting rather than clinical examinations. Self reporting creates low validity results.

5. One of the two Scripps lead researchers later distanced himself from the findings, and promoted need for increased screenings.

6. Scripps had long benefited from deals in which drug companies provide financial support for basic research in exchange for first rights to intellectual property arising from any discoveries.

Later, larger and more rigorous studies conducted by US medical Institutes and worldwide health agencies in Australia and Ireland placed the number of people who get ill at 35 percent.



Since Scripps was the first major study by a respected name, it set policy, funding allocations, medical education, for decades to come.  The inaccurate conclusion that hemochromatosis was nothing to worry about permeated medical systems. Worse, the false narrative of “rarely causes illness” morphed into “rare” disease, marginalizing it further at the expense of countless lives lost.

“ … most physicians have never personally diagnosed a case, but all will see an unrecognized case in their offices every two weeks.” -Vincent J. Felitti, MD, FACP Lead Scripps Researcher who distanced himself from findings.



Avg. time spent training medical students about hemochromatosis: 15 minutes.

Avg. Diagnosis Takes 10 Years.

2015 survey, 48 percent of medical personnel agreed with the following inaccurate HH info:


Old Man’s Disease

Few People Get Sick From It.

Women Don’t Get It.

Routine Blood Tests Catch Most Cases. (the same tests which haven’t been routine since 1996)



Follow The Money

In 2016, a minority of hemochromatosis cases are diagnosed. With 15 million carriers, 3 million with double mutations approx. 75 percent remain unaware.

But who could blame the public or doctors when medical websites and doctor portals such as up-to-date have these numbers flipped? Assuring the public with completely backwards numbers and improperly educating doctors that 75 percent of HH cases are diagnosed by the time one reaches adulthood. (false) When confronted with these inaccuracies the administrators claim to be swamped and would look into updating and revising their information – the irony can not be lost, given the name of the doctor portal in question is up-to-date.

Until 1996, ferritin testing was on the standard executive blood panel run when getting a physical or in the emergency room. A cheap, wonderful diagnostic tool. Follow up and a simple genetic test offers 100% certainty of hemochromatosis mutations.

The American Medical Association’s (AMA) own study concluded a 20 fold increase in detection of HH/iron overload if ferritin tests were again standard and routine.

Wrap yourself around those numbers. If 20,000 people are diagnosed annually, we’d see a bump to 400,000 new cases in the USA alone.

Why was it taken off the standard blood panel in the first place?

In 1996 a San Diego lab got caught billing twice, once for the standard panel and once for the iron test, to the tune of $125,000,000 annually. Instead of bringing fines and criminal penalties against the lab and individuals responsible,  the iron panel test was removed. This allowed the lab to get paid legally to run both tests.

Called unbundling, big pharm and the insurance industry promoted it as a cost savings measure. It assumed that doctors knew best when to order iron tests and since the occurrence illness was so low, it should no longer be routine. Unfortunately, the only savings was to the insurance companies, Unbundling actually increased patent costs by $300 for the same tests.  A tragic consequence is that less people get diagnosed with HH – sending them downstream in the health system, resulting in more chronic and deadly illnesses.


Illnesses it should be noted, that the pharm. industry has profitable drug treatments for.

It’s painful to think how many lives could have been saved since 1996 if those tests had remained standard and routine. We should be advancing, not going backward in medical diagnosis, early treatment and preventative care. instead we went in reverse.



Development of a chelator drug treatment was attempted in the 1990s. Too many dangerous side effects caused it to be abandoned for large production. The question must be asked; Why would a drug company pursue a commercial treatment for a disorder that causes a less than a 1 percent illness rate?

Also, Why take an active role in unbundling the diagnostic blood tests for HH from routine panels AFTER commercial drug creation failed?

Fast forward to 2015. During an interview with a drug company entering clinical trials for a new ferritin reducing drug, the first attempt in decades, the question was asked, why spend time and money developing a drug for a disorder that makes so few people ill?  The question was met with laughter. The medical officer of the company explained that early studies the entire medical system based its policies on were flawed. A more thorough assessment of worldwide studies put the rate of illness, conservatively, at 25-30 percent.


The Pharm. Industry is a multibillion dollar growth industry with 6 in 10 taking some form of daily medicine. There’s nothing anti-science or anti-medicine about questioning why more emphasis and funding isn’t placed on prevention, healthy lifestyles and  seeking root causes/triggers of chronic and deadly illnesses. To be clear, there is a vital role in medicine for developing lifesaving vaccines and drug therapies, but  turning a blind eye to the overwhelming medical information that focusing on hemochromatosis will prevent significant percentage of resulting illnesses  is criminal. It moves this beyond a medical question, to an ethical and moral one.

How you can help:

  1. Sign petition to make testing standard and routine again worldwide: petition
  2. Share This PSA
  3. Donate to specific actions projects at support
  4. Share this article.



Great Article About How Often Iron Overload Is Overlooked Within A Family


‘I unknowingly began poisoning my husband’

on Tuesday, 03 May 2016. Posted in Healthwatch Wigan, Health News, Headlines


‘I unknowingly began poisoning my husband’

Fatigue, arthritis, diabetes, cirrhosis, bronzing of the skin, abdominal pain and cardiomyopathy.

These can all be caused by undiagnosed, untreated iron overload or genetic haemochromatosis (GH). Iron builds up over time damaging vital organs and joints and causing any combination of symptoms.

Although GH is one of the most common conditions in Britain, our story is rare in the sense that Graham was diagnosed early. His only symptom at the time was extreme fatigue; I went to the pharmacy for various tonics containing iron and vitamin C.  And so I unknowingly began poisoning my husband – iron is toxic to someone with genetic haemochromatosis and in addition vitamin C increases the absorption of the iron.

It was later, whilst investigating an unrelated issue, that his iron levels were found to be high and he was diagnosed with GH.

We joined The Haemochromatosis Society and also the North West GH Support Group where we learnt so much.  Through these groups, we met far too many people that were diagnosed late – many with serious symptoms who have had to endure hip and knee replacements, liver transplants, insulin dependence, and so on.

All this made me realise how fortunate we had been that Graham had been diagnosed early, and made me determined to try to ensure that more people are diagnosed early too.  I began visiting local pharmacists, educating them on the danger of recommending these tonics without checking iron levels.

After visiting 50 Pharmacists I realised that this was not practical – I would never be able to reach every pharmacist alone.  I then approached the Local Pharmacy Committees who agreed to publish articles in their newsletters.

Meanwhile Graham was having weekly venesections (blood lettings) until his iron levels were reduced to a safe level. Also, as this is a genetic condition, Graham had to inform his close relatives so that they could be tested.

Since then our “Awareness Campaign” has snowballed.  I have joined the Committee of the North West Group and we are getting the message across to other healthcare professionals such as chiropractors and physiotherapists.  I’ve organised talks at Carers’ Centres and had articles published in health related magazines.

Graham is doing well. His venesections are now three monthly.  His siblings’ and children’s iron levels are at normal levels and they will be regularly monitored.  I hope and pray that in the future more people will have the positive outcome Graham has had.

By Suzy Makin

For more information on Hemochromatosis, please click here