Welcome to the Big Top: Elephants on Parade - Part IV

by Donna Reagan

Before I jump into the substance of today’s topic, I thought I’d share something from my personal life. I know many of you are now on the edge of your seats, and I must warn you - you are about to be disappointed for total lack of ‘juicy-info-factor’. My apologies.

Currently, I am in the midst of training my 75-lb mixed breed (half Pitt Bull/half Boxer) dog. I am attempting to teach him how to walk on a leash and how to NOT destroy everything in sight simply because he is bored. This, so far, has proven to be quite difficult for me – especially considering that taking him for a walk is essential if I am to meet his exercise needs along with his need for companionship.

As some of you can probably guess, many times it feels like my ‘puppy’ is taking me for the walk….because he is. Although I clearly out weigh him twice over, he is much stronger than me. Sometimes during our training sessions, I also wonder who is training whom. Although I’m the one giving treats and praise if he performs in the manner I wish – I sometimes wonder if he’s thinking that HE’s training me to give him treats if he just rolls over for a moment?

This thought led me to wonder if most trained animals think of themselves as being in the dominant role. Surely the circus animals like lions, bears, and elephants – with all their strength and weight on their side must certainly see they have some advantages over the human animal. And yes, I’m not blinded to the cruel reality that many of these animals are ‘broken’ – that man has broken their spirit in order to train them, which is one reason they will perform unnatural, and potentially painful acts such as elephants sitting on their back legs, feet raised in the air.

However, pretending (because this is my column…remember lots of pretending takes place here) these animals are treated with respect, and trained in a positive manner – I wonder if they think it is they who ultimately have the power? Because of its sheer weight and size, I naturally must make comparisons between the elephants and the pharmaceutical industry – with my apologies to the elephants of course.

While it seems “Big Pharma” works to meet the needs of the public, and while it seems the elephants work to please their trainer and the audience – what if these “beasts” consider it the other way around? What if the elephants agree to not crush the human trainers to death in exchange for their kibble? Perhaps that is the case….SO WHAT? Besides, how can that possibly compare with a multi-billion dollar industry that depends upon getting their “kibble” from the general population?

What possible power does “Big Pharma” have over the human animal - mankind?

Welcome back to the Big Top! Before we proceed to further examine the Big Pharma beast – that parade of “elephants” standing prominently in the room, I would first like to make a highly-opinionated, and possibly controversial statement. Remember it’s my day to pretend that I am a columnist, so I’m allowed to do such things.

As Americans, we have been led to believe via our history books, media, etc., that it is WE, the PEOPLE, whom are running this country. We hold elections and elect the ‘best’ candidate –or often – the lesser of other evils – into legislative office in order to represent our views and take good political care for our needs as tax-paying constituents. And no – that wasn’t the highlyopinionated, possibly controversial statement.

Here it is: Some of WE, the PEOPLE, are being controlled like puppets by corporate interest. Naturally, when I say that I’m not really talking about anyone or any entity other that multi-billion dollar corporations such as the pharmaceutical industry - “Big Pharma”.

Whether you like it or not, and whether you’re even wiling to see it or admit it – Big Pharma has a large level of control in our hallowed halls of legislation. Why? Because Big Pharma has got the money; and if you remember what my momma told me, and possibly what your momma told you about emotionally incomprehensible issues: “Follow the money!”

In doing so, I hope you don’t find it objectionable for me to suggest that such beasts do not satisfy themselves by tampering with legislative matters alone, for indeed, that is not the source of their wealth. Big Pharma makes its money by peddling its wares. On any given day or night, you can see what Big Pharma has to offer as it utilizes its backpocket relationship with major media networks to bring you news stories of the latest, greatest miracle pill, and an endless array of commercials trying to convince even the healthiest of persons to “Ask your doctor…”

This brings me to that most noble of professions – the healer – the man or woman entrusted to “First do no harm” as s/he endeavors to find an answer to physical, mental, or emotional ills. This unquestioned trust in the healer is what brings me such sadness when I suggest that even our healers cannot be trusted; for, they, too – not all, but many – have formed a back-pocket relationship with the “beast”.

The beast has also, and perhaps more unfortunately, corrupted the doctors and scientists that perform medial studies and work to develop treatments for the variety of ailments that afflict us. The beast has infiltrated our institutions of learning – providing sponsorship for quasi-academic studies that will influence a variety of other “professionals” as they evaluate the need for care, and develop treatment guidelines used by the unsuspecting front-line physicians seen by the masses…the naïve masses with their wallets out, ready to pay for any remedy to their suffering.

So what does this long-winded, confusing analogy have to do with the IDSA’s new Lyme disease treatment guidelines? Perhaps nothing? Perhaps everything?

Suppose if you will that the 14 IDSA guideline writers had vested interest in particular pharmaceutical corporations. Suppose if you will, that one, two, some, or all were offered an enticement either directly or indirectly? After all, research is expensive. Salaries must be paid. IF that were the case, and far be it from me to suggest that it is, I wonder what side of a controversial medial issue they would land? Hmmm….. I suppose it would be dependent upon their conceived need for funding, and of course, their personal level of greed.

What IS this column all about today, you might ask? It is really very simple. For the patient suffering from a chronic infection of Borrelia burgdorferi, or some other form of a tick-borne disease, long-term antibiotics have been the most effective treatment utilized by those physicians who actually treat all stages of the disease. However, a select group of members of the IDSA formed a committee of doctors to update their treatment guidelines for Lyme disease.

It is my contention that one, some, or all were blinded, perhaps by their own greed, or just their need to replace all that lab equipment they secretly broke; or office supplies they accidentally confiscated from the hospital or university for which they are actively employed. Petri dishes and paper clips are expensive.

At first glance, the fact that the IDSA guidelines suggest a litany of mediations, such as most of the antibiotics and anti-malarial mediations (used for specific co-infections), as “not recommended” for the treatment of Lyme disease seemed illogical to me on so many levels.

Let’s face it - long-term antibiotic treatment should seem like a coup to Big Pharma. Therefore, shouldn’t Big Pharma rise up and attempt to denounce guidelines that would discourage the masses from obtaining and purchasing long-term medication? And yes, I realize that many folks may argue that antibiotics are cheap because generics are becoming more plentiful, but I, also being a patient, must shriek in disagreement. There is a large quantity of antibiotics that certainly cannot be classified as “cheap” - at least not by the ‘average’ consumer. There are significant quantities of antibiotics that Walmart is NOT selling for $4 per prescription. Just ask the really sick people!

Being a sick person, I’d like to comment that between my insurance company and me – we collectively shelled out $4,427.00 for oral antimicrobial therapy to treat my Lyme disease and co-infections for the fiscal year of 2006. This does not seem like chump change to me, as I would have gladly taken my portion of that sum and gone on a modest vacation. Going on the assumption that 200,000 people are diagnosed with Lyme disease each year and that I am an “average” patient (stretch your imagination if necessary) – then one year of longterm oral antibiotic therapy would give Big Pharma about $885,400,000.

However, if I, along with my 200,000 new friends had only been allowed about one month of antibiotics, as described in the new IDSA guidelines, that individual expenditure for oral antibiotics would have dropped to around a total of $368.92, assuming symptomology, blood test results, and tick history would have even satisfied the IDSA’s rigid criteria for diagnosis of Lyme disease in the first place. That would have dropped Big Pharma’s take to approximately $73,784,000 – still a lovely number, but really no comparison to nearly $900,000,000 for that same group of friends. Therefore, with that in mind, the idea that the IDSA guidelines writers could have a conflict of interest due to any connection with Big Pharma, initially, just didn’t make sense to me….until I reminded myself, that once again, it’s just not good business for anyone to peddle CURES. Treatments, yes. Cures, no.

While nearly $4,500 was spent on oral antibiotic therapy for me this year alone, my insurance company and I forked out over $20,360 on medications to ease my wide assortment of suffering. (And no wonder my insurance company doesn’t like me!) This number does not include the shelves of supplements, homeopathics, herbals, etc. that I also purchased in an attempt to rise above my illness so that one day I’d actually feel well enough to take a modest vacation….or ANY vacation at all. Yet, I digress.

First, if you would stretch your imagination again to consider that I am “average” when it comes to expenditures for symptom relief, (and honestly, I have no idea what ‘average’ would be since Lyme disease can manifest with 350 different symptoms…or more), then we could take my yearly average of $20,360 and multiply it by the 60 years that statistically should be my adult lifespan provided a representative from “the beast” does not shorten it just to shut me up… that comes out to a lifetime total of $1,221,600 just to keep me from wanting to throw my own body in front of a freight train because of all the pain and misery associated with this disease.

Why would I have to pay $20,000 a year for symptom relief, you ask? Because the IDSA’s recommendation to limit antibiotic therapy to one or two courses at the most would leave me with a raging infection because anyone that has studied the nature of spirochetes know they can morph into various forms which require a long-term approach in order to eradicate every single colony. The short-term approach is simply not adequate for a patient that has been infected with the Lyme bacteria for longer than just a handful of days.

Question: If I, a layperson, can understand the reproductive habits of spirochetes, along with the necessity of targeting all forms of the Borrelia, while also recognizing the necessity to address the co-infections that come along only to make eradication all the more difficult -- why don’t the writers of “the” treatment guidelines understand that too? After all, they have fancy letters behind their name that would indicate they have been educated.

Answer: They do understand. They certainly do, and they are just hoping the majority of Lyme patients remain ignorant and live out their days, content with the label “Post Lyme Syndrome”, or a wide array of other misdiagnoses.

Question: But they are doctors, what would motivate them to want such? Aren’t doctors supposed to cure people?

Answer: Listen to your momma. Follow the money.

For the handful of mathematicians reading this drivel, I’m sure you can surmise that $1,000,000 spent over a lifetime multiplied by the 200,000 patients diagnosed with this disease each year means an endless supply of customers and a very complicated math equation…like with exponents and stuff. (And to be fair – this does not take into consideration the thousands of patients misdiagnosed with other very costly diseases such as Multiple Sclerosis, Lupus, ALS (Lou Gherig’s Disease), Parkinson’s disease, and so many more!)

So you see – these guidelines aren’t about patient care, or who is truly correct about when a patient can be classified as positive with Lyme disease or when a patient is hereby “cured” of Lyme disease. The IDSA guidelines aren’t about patient care at all…it’s about following the money. It’s about greed; and about serving the puppet master, that well-known beast, Big Pharma.

Now – far be it from me to point a finger at any one guideline contributor and accuse them of having conflicts of interest. I just think it interesting that a preponderance of the guideline writers’ work with, or have worked with, medical schools who rely on government grants and pharmaceutical sponsorship in order to perform research and ultimately “stay in business”. In addition, some of these writers have worked in conjunction with an array of pharmaceutical companies in the name of vaccine development; they’ve worked as ‘consultants’; and also had their hands deeply invested in clinical trials.

In fact, years ago the lead guideline writer, Dr. Gary Wormser, was even sued by patients who attested that Dr. Wormser mishandled their adverse reactions to the Lymerix vaccine, a product made available by…Big Pharma. Hmmmm…..

I’m sure if you dig – it would be possible to discover a wide range of potential conflicts of interest between the IDSA guideline writers, their employers, and Big Pharma. I could probably do it myself – but it would take away from my time lounging around in my pajamas, swallowing an assortment of colorful FDA-approved drugs, wondering why and how WE, the People have given away so much of our personal “power” to multiple “beasts”, and wishing I had the energy to run away with the circus, or at the least, take a modest vacation.

In closing, I’d like to leave you with a quote from Groucho Marx. I have no idea how it applies here - I just like it:

"One morning I shot an elephant in my pajamas. How he got into my pajamas I'll never know. "