Hemochromatosis Awareness & Education Bicycle Ride 2018

Carry The Weight: Coast to Coast He11692754_10206075691186325_7464400074528600817_nmochromatosis Awareness, Education Bicycle Ride.

Fundraising Goal: $125,000

 

 

 

Programs It Will Fund

1. HH National Awareness Campaign . (videos, ads, media saturation.)

2. Advocating  For A National Standard Screening Program. Petition drive: https://www.change.org/p/demand-gov-put-iron-tests-back-on-routine-blood-panel-www-cms-gov-www-cdc-gov-patty-murray-lamar-alexander-bernie-sanders-al-franken-richard-burr-rand-paul-demand-gov-put-iron-tests-on-routine-blood-panel-prevent-deadly-and-chronic-illnesses

3. Campaign to increase # of locations where HH Blood accepted for transfusion.

A virtual/online bike race by people to a set fundraising finish line.  While, in the physical world Joe will bike across America to bring  attention to Hemochromatosis With people joining him  along the way.

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Wearing the number 52 which represents how much donatable, lifesaving HH blood per person gets thrown away annually. Millions of pounds of good blood is treated as biohazard material (costly disposal) instead of going inside veins and saving lives.

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Donors can pick rider(s) to support on the virtual ride and people are encouraged to join Joe during any part of the ride cross country.

The ride itself will bring local, regional and national media attention to increased awareness of Hereditary Hemochromatosis.

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.

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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.

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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

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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.

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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
Adenocarcinoma
Adrenocortical Insufficiency
Alzheimer’s Disease
Alzheimer Disease Type 2
Amyotrophic Lateral Sclerosis
Aplastic Anemia
Artery Disease
Arthropathy
Ataxia
Ataxia Neuropathy Spectrum
Arthritis
Atherosclerosis Breast and Colorectal Cancer
Beta Thalassemia
Breast Cancer
Cataract
Cervical Cancer
Cervicitis
Childhood Leukemia
Chronic Myeloproliferative Disease
Chronic Venous Leg Ulcers
Cluster Headache
Colon Cancer
Common Variable Immunodeficiency
Colorectal Cancer
Cystic Fibrosis
Deficiency Anemia
Dementia
Diabetes Mellitus
Diabetic Nephropathy
Dilated Cardiomyopathy
Duodenitis
Fatty Liver Disease
Fibromyalgia
Friedreich Ataxia
Gastric Cancer
Headache
Hemochromatosis Type 1
Hemochromatosis, Type 2
Hemophilic Arthropathy
Hemosiderosis
Hepatitis
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
Hiv-1
Hyperferritinemia Cataract Syndrome
Hypertriglyceridemia
Hypogonadism
Infertility
Insulin Resistance
Iron Deficiency Anemia
Iron Metabolism Disease
Kaposi’s Sarcoma
Kidney Disease
Lateral Sclerosis
Lead Poisoning
Liver Cirrhosis
Liver Disease
Leukemia
Lymphoblastic Leukemia
Malaria
Male Infertility
Microcytic Anemia
Microvascular Complications of Diabetes 7
Migraine
Mononeuritis
Multiple Sclerosis
Myeloid Leukemia
Myelodysplastic Syndromes
Myocardial Infarction
Neuroblastoma
Neuronitis
Neuropathy
Nonalcoholic Steatohepatitis
Osteoarthritis
Ovarian Cancer
Pancreatitis
Parkinson’s Disease
Pearson Syndrome
Peripheral Artery Disease
Peripheral Neuropathy
Porphyria Cutanea Tarda
Porphyria Polycystic Ovary Syndrome
Pyruvate Kinase Deficiency
Retinitis
Rheumatic Disease
Rheumatoid Arthritis
Sarcoma
Schizoaffective Disorder
Schizophrenia
Sickle Cell Disease
Siderosis
Syndromic Diarrhea
Thalassemia
Thromboembolism
Thyroiditis
Type 2 Diabetes Mellitus
Variegate Porphyria
Venous Thromboembolism
Viral Hepatitis
Wilson Disease
X-Linked Sideroblastic Anemia

 

 

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

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

Unknown

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.

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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.

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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

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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.

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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.

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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.

 

 

 

  1. FLAWED RESEARCH SET POLICY
  2. INACCURATE MEDICAL EDUCATION MARGINALIZED DISORDER’S IMPACT
  3.  ROUTINE TESTING WAS REMOVED DURING THE 1990S.
  4. WHEN DEVELOPMENT OF A SAFE, PROFITABLE DRUG TREATMENT FAILED, THE INDUSTRY FOCUSED ON PROFITABLE TREATMENTS FOR RESULTING ILLNESSES INSTEAD.

FLAWED RESEARCH

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.

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FALLOUT

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.

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INACCURATE MEDICAL EDUCATION MARGINALIZED THE DISORDER’S IMPACT

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:

Rare

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)

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ROUTINE TESTING WAS REMOVED DURING THE 1990S:

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.

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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.

PHARM INDUSTRY FAILED TO CREATE A SAFE, PROFITABLE DRUG TREATMENT

ACTIVELY MARGINALIZED HH

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 INDUSTRY FOCUSES ON PROFITABLE TREATMENTS FOR RESULTING ILLNESSES, INSTEAD OF PREVENTING UP TO 20 PERCENT BEFORE THEY TAKE HOLD… BECAUSE PREVENTION WOULD IMPACT THEIR $$$ BOTTOM LINE.

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.

 

 

February Kicks Off Our “Giving The Middle Finger To Hemochromatosis” Campaign

“Giving The Middle Finger To Hemochromatosis”

Iron Overload Disease has screwed over so many good people around the world. It’s taken lives and ruined futures and it causes so much chromic illnesses, and often without warning. 3 million with HH and 15 million carriers who can and do load iron in the USA alone. The disease poisons your organs and tissues by storing excess iron.  which can lead to liver failure, heart attacks, cirrhosis, Alzheimers, arthritis, and a host of cancers. Average diagnosis takes 10 years, 75 percent don’t feel symptoms. Early diagnosis and treatment is crucial.

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Joe Kurmaskie, the founder of ironitout.org will be joined all month by his favorite singers, actors, scientists, teachers  and more to help tell the most common deadly genetic disease in the world – orphaned, marginalized and ignored for two decades – where it can stick it! (disclaimer: these are public domain, unaltered meme style images of public figures, not to be mistaken for formal endorsements. That said, we think many of them would be hip to the cause, so if they want to get in touch… )

For anyone who might consider this  in any way offensive, just consider how offensive it is that simple blood tests to detect this disease were taken off the routine panels nationwide to save money… at the cost of countless lives!

Share these memes far and wide and sign our petition here. petition

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