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Fueled by Greed, Flawed Research, Outdated Information and Misdiagnosis,      Profit Driven Medicine Left Millions With Hemochromatosis to Suffer and Die – Pocketing Billions Treating Dozens of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

 

 

2 thoughts on “Profits Over People: Deadly Impacts Of Hemochromatosis Hidden For Decades

  1. Lost both parents early; most of my siblings won’t get tested- which means their kids won’t either. One of my brothers had a doctor tell him his sister couldn’t have HH since women don’t get it! It made my liver chirrhotic. And treatment is SOOOOOO easy.

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