Chronic Denial - Benefits Outweigh the Risks??

Chronic Denial

I left NY ten years ago to take a position at the Cleveland Clinic’s Department of Pain Management.  The Clinic has a reputation for taking on difficult cases from around the country, and overseas.  It’s not unusual to see unusual cases there. Even so, one of the common guiding statements in medicine is that “when you hear hoof beats, think horses, not zebras” – i.e. expect to see common disorders, not rare ones.  Still, there are many patients that fall between the cracks without benefit of a common or clear, meaningful diagnosis.  The level of discomfort, frustration, and fear in these patients is high.  They represent a failure in medicine.  Failure is an affront to the ego’s need to know and be in control – for both practitioner and patient.  We want our practitioners to have the answers, and, we want to believe there are solutions and fixes in our grasp.

It took me a couple years of working at the Clinic to realize that many of my more difficult patients – patients that were not getting better despite (or perhaps, due to) trying everything under the sun - were suffering, in part, from iatrogenic conditions.  “Iatrogenic” means medical issues that are caused by prescription drugs or medical procedures.

  Somehow the topic of patients injured by Rx drugs or adverse effects from procedures was rarely talked about.  An article in The Journal of the American Medical Ass’n (JAMA) from 1998 found that over 100,000 people are killed yearly by prescription drugs taken as prescribed.  Death by prescription drugs is estimated to be the 4th or 6th leading cause of death in the US.  There are also over 700,000 emergency room visits yearly due to adverse effects of Rx drugs.  This would seem to be more of a horse, than a zebra – ie common, not rare.  Why doesn’t this topic get more attention?  Does medicine really believe that iatrogenic issues are not a problem or are they purposely not talking about them?   

Medicine is a business like any other industry.  As such, it has its own dogma that is accepted as truth.  Those who speak out against the dogma of their industry or institution find themselves marginalized or excommunicated from the mainstream of the industry.   Apparently one of the dogmas of medicine is that dangerous adverse reactions to drugs are rare, and that the benefit of using approved drugs outweighs the risks.  Which brings me to another common truism in medicine - you can’t see what you don’t know to look for. 

Down the Rabbit Hole

Five years ago I became one of those patients in one fell swoop after taking a Fluoroquinolone antibiotic.  Fluoroquinolones (FQs) are very powerful, synthetic antibiotics and include the popular drugs Cipro, Levaquin, and Avelox.  Chances are, you or a family member has taken at least one of them.  What you might not know is that there is a whole subculture of patients that have been severely injured long term to permanently by FQs.  In my own case, about ten days after taking five days of the prescription, I came down with sudden onset body-wide tendon pain and tendon injuries to both Achilles tendons.  Neuropathy, neuromuscular weakness, and more symptoms were soon to follow.  I knew immediately that I was having adverse effects from the prescription, yet the first couple of doctors & colleagues I spoke with at the Cleveland Clinic insisted that the drugs could not be responsible and that the onset of these ‘bizarre’ symptoms must have been a coincidence – not attributable to the drug.  What?!  I was dumbstruck.  How could this not be obvious to my physician colleagues?  There is plenty of peer reviewed, scientific literature linking FQs to tendon injuries, neuropathy, cartilage damage, and all sorts of damage one would not imagine an antibiotic to cause (google “fluoroquinolone toxicity”). I told one doctor that I could show him hundreds of such coincidences in five minutes on a Fluoroquinolone Toxicity Syndrome support group online. 

Dogma Trumps Reality

As I was to discover, patients have been shouting about this for 20 years and effectively ignored and denied by the Pharma dominated medical industry.  The phrase used to describe these debilitating reactions in support groups is called “being FLOXED” based on the drug names – Ciprofloxacin, Levafloxacin, etc.  In the support groups for Fluoroquinolone Toxicity Syndrome, members come from all walks of life – including floxed doctors, floxed dentists & floxed pharmacists.  None of these medical professionals had ANY idea that they could be so profoundly  injured by these drugs.  In fact, most of the medical professionals in the support groups have admitted that if a patient of theirs had told them that a Fluoroquinolone had injured them in this way, they would not have believed them.  They believe them now, of course, now that they are experiencing it firsthand themselves.  The vast majority of people injured by these drugs still are denied by medicine – despite the existence of a documentary film made about FQ Toxicity, 2 books written about Fluoroquinolone Toxicity, a PBS featured story and at least 50 news stories on local tv news stations across the United States, not to mention a Hollywood film, The East (2013) featuring a plotline involving the dangers of these drugs.  The continued denial of “floxing” in the medical profession is a testament to the power of dogma in medicine, the power of Pharma to perpetuate dogma, and a need for more effective oversight. 

The Dam Breaks?

I (and 30 of my new friends) recently spoke at an FDA hearing (November 2015) on the labeling of Fluoroquinolone Antibiotics for certain kinds of infections.  As a representative of the FDA finally acknowledged this year – these drugs don’t just have ‘side effects’ – they can cause a long term to permanent, sometimes progressive, multi-systemic, debilitating to disabling syndrome.  For the first time, after more than 20 years of patients complaining, the term “Fluoroquinolone Associated  Disability”, or FQAD was coined by an FDA representative. 

How does a situation like this go on for decades?  Doctors must believe the dogma that 1) this syndrome (FQAD) is not possible, or 2) that this reaction is so rare that they will probably never see one like it in their clinic.  As was brought to light in the public FDA hearing of November 2015, neither one of these dogmatic beliefs is accurate.  Everyone knows antibiotics save lives, and accepts that drugs have potential side effects – but who knew they could cause people to lose their jobs, their health, the ability to enjoy vigorous hobbies such as hiking, playing sports, and participating in activities that they have enjoyed for years – and your doctor likely knows nothing about it. Talk about an “inconvenient truth”.    

A Broken System

There are more Pharma lobbyists in DC than there are members of congress.  The Pharmaceutical lobby allegedly outspends every other major industry lobby in DC.  We’d be naïve to deny money talks.  The FDA is beholden to the industry it regulates for part of its own budget.  Drug safety data from clinical trials is provided by the very companies who will profit from a positive outcome of those clinical trials.  Clearly, physicians are not given an accurate portrayal of adverse drug events – or they are provided in a way that is easily overlooked.  I could go on . . . let’s just say there is science and then there is marketing dressed up to look like science.  As one aware MD colleague remarked to me, those injured by FQs are just the "tip of the iceberg".  Despite all its advances and gifts, medicine is still a minefield.   

There is no conventional medical treatment for floxed patients.  So, what is the treatment for ‘Chronic Denial’ in medicine?

Is full disclosure too much to ask?

In health,

Tim Rhudy, MS, LAc

For more on FQAD/FQ Toxicity:  Documentary: Certain Adverse Events  PBS Feature Story   Investigative Journalism from Canada   Docs in Denial by Dr. Cohen  FDA Hearing  FDA Hearing  Feature Film  Feature Film   NY Times  Wall of Pain Social Media  Book - Investigative Journalism  Book: Jay Cohen, MD