Monday, September 3, 2012

Our System for Treating the Sick Is Sick Itself; No Cure In Sight

Hippocrates: a conventionalized image in a Rom...
Hippocrates: a conventionalized image in a Roman "portrait" bust (19th century engraving) (Photo credit: Wikipedia)
I’ve recently come across a spate of news pieces that illustrate just how far our health care system has gone astray. Most of the folks reading this blog are themselves chronically ill, or have a personal connection to the chronically ill. As such, Wheelchair Kamikaze readers are unfortunately more familiar than the average Jane or Joe with the inner workings of the world of modern medicine.

For the healthy, from the outside looking in, modern medicine can often appear to be a sleek and technically sophisticated miracle machine, using high-tech wizardry and groundbreaking research to treat and tame diseases that have been the scourge of mankind for millennia. This image is carefully cultivated, through public relations, advertising, and a news media that loves a good story about astonishing advances made in the battle against disease. Those of us who are forced to enter the belly of the beast, though, often find something quite different: a confusing, frustrating, and often dysfunctional world in which reliable answers are heartbreakingly few and where patients are too often seen as consumers rather than sick human beings. Though individual healthcare practitioners themselves are, for the most part, good men and women, the system within which they operate has evolved to put profit before patient, and the subtle and not-so-subtle pressures this framework exerts can warp even the best intentioned souls among them.

Here, then, is a smattering of examples that each serve as windows into the often enigmatic environment in which patients are forced to tread. Think of the following snippets as flashbulb lit snapshots taken in a pitch black room, briefly illuminating nooks and crannies that can only hint at the whole of a much larger setting. Each example is in itself maddening, but strung together they portray a system of treating the sick (and healthy) that has drastically gone off the rails.

♦ HCA, the largest for-profit hospital chain in the United States, is revealed in this article (click here) to have played host to a disturbingly high number of cardiac procedures (mostly angioplasties) that were found to be medically unnecessary, and apparently performed to drive profit and increase both the company’s and the treating physicians’ financial bottom lines. At Lawnwood Regional Medical Center, in Fort Pierce, Florida, a confidential review revealed that about half of the diagnostic cardiac catheterizations done at the facility were performed on patients without significant heart disease. A review of HCA internal documents indicated that “rather than asking whether patients had been harmed or whether regulators needed to be contacted, hospital officials asked for information on how the physicians’ activities affected the hospitals’ bottom line.”

Driven by the need to show steadily increasing profits in the face of the company’s impending Initial Public Offering, it seems that HCA turned to cardiac care to provide a reliable pipeline of revenue. A 2003 review of procedures done at Regional Medical Center Bayonet Point, in Hudson, Florida, revealed that a disturbing 43% of 355 angioplasty cases “were outside reasonable and expected medical practice”, and that treating physicians routinely overstated the degree of coronary blockage found in the treated patients. As a result of this internal review, Bayonet Point suspended the privileges of nine physicians. These cardiac procedures were a financial boon to the company, as Medicare reimburses hospitals about $10,000 for each stent used in angioplasties, and $3000 for diagnostic catheterizations.

One would hope that instances of such rampant malfeasance are extremely rare, but although this report concentrated on one large hospital chain, the unnecessary procedures were performed in a number of different facilities, and by a shockingly high number of physicians. As is evidenced by this account, the institutional and personal pursuit of profit within the healthcare system would appear to be a potent inducement for some of those who took the Hippocratic oath to turn their backs on that solemn text.

♦ The headline of this article shouts that “Diabetes May Be Reversed by Long Used Vaccine for TB” (click here). Great news, right? Well, not so fast. In a small study the 90-year-old vaccine, called BCG, was shown to induce the completely nonfunctioning pancreases of some type I diabetics to once again start producing insulin. “These patients have been told their pancreases were dead… We can take those people, give them a very low dose twice and see their pancreases kick in and start to make small amounts of insulin.”

So, what’s the problem? Sounds like widespread research should be undertaken posthaste. The vaccine already exists, and has been in use for almost a century to treat not only tuberculosis but also bladder cancer. But therein lays the problem. A 90-year-old vaccine cannot be patented, and is readily available as a cheap generic. Therefore, huge heaps of cash cannot be generated by finding new uses for it. Soon after the lead researchers made their initial discoveries using mice, “they tried to interest every major drugmaker in developing the vaccine as a possible cure for diabetes. All told her there wasn’t enough money to be made in a cure that used an inexpensive, generically available vaccine.” The researchers are currently undertaking fundraising from private donors, and thus far have $11 million of the $25 million needed to proceed to the next stage of research.

As disturbing as the story is, with its seemingly blatant disregard for the well-being of millions of people worldwide suffering from type I diabetes, the hard truth is that the major pharmaceutical companies were actually fulfilling their legal mandate in turning down research that had very little, if any, profit potential. All of the major pharmaceutical companies are public companies, their stock traded openly on world markets. Publicly traded companies are mandated by law to be beholden to their shareholders, not to the customers who eventually consume their products. The job of pharmaceutical company CEOs is not to produce the most beneficent concoctions their researchers can come up with, but rather the most profitable ones. In declining to fund further research into the BCG vaccine’s role in potentially eradicating type I diabetes, drug company executives were not only fulfilling the responsibilities of their office – doing their jobs, so to speak – but also following the letter of the law. Not to go all gutter on you, but how fucked up is that?

♦ As patients afflicted with a horrible disease that has no cure, we often vent our frustrations about those who are the face of this medical universe we have unwillingly been sucked into, the physicians who regularly treat us. A quick sampling of the online conversations being held on Internet MS forums soon reveals that many patients openly revile their neurologists, some of whom I’m sure deserve all the reviling they can get. I count myself as one of the extremely lucky ones, as I feel an actual affection for my neuro, despite his inability to stop the relentless progression of my disease. He’s simply an empathetic man, and his frustrations with trying to treat this repugnant illness are evidenced by his obsession with trying to unravel its mysteries. We don’t always agree on treatment options, but I know in my heart that my neurologist has my best interests in mind. I say this not only because of my own personal sense of the man, but also for some far more tangible reasons: he doesn’t accept insurance, and doesn’t allow pharma sales reps to enter his clinic.

This commentary (click here) provides some insight into the phenomenon of physician burnout, a condition brought on by the restrictions and edicts of a system that would seem to sometimes be as frustrating for the doctors trying to operate within it as it is for patients seeking reliable and compassionate treatment. A recent survey of 7000 doctors “found that almost half complained of being emotionally exhausted, feeling detached from their patients and work or suffering from a low sense of accomplishment.” Doctors suffering from such burnout are obviously more prone to make mistakes, have an inability to establish any kind of real relationship with their patients, and generally perform below the expectations of the sick people who are so reliant on them.

The cause of this physician malaise is often invisible to those of us under a doctor’s care, who may only see an insensitive and mechanical being who exhibits little or no empathy towards our plight. Indeed, that’s the way I viewed my first MS neuro, and why I sought out the services of the man who is now my doctor.

According to the commentary, “The study casts a grim light on what it is like to practice medicine in the current health care system. A significant proportion of doctors feel trapped, thwarted by the limited time they are allowed to spend with patients, stymied by the ever-changing rules set by insurers and other payers on what they can prescribe or offer as treatment and frustrated by the fact that any gains in efficiency offered by electronic medical records are so soon offset by numerous, newly devised administrative tasks that must also be completed on the computer.

In this setting, “doctors are losing their inspiration… and that is a very frightening thing.”

While this certainly does not excuse all of the bad behavior by physicians recounted by patients in conversation after conversation, it certainly makes some strides towards explaining it. Indeed, many doctors feel so frustrated by the factory like approach dictated by insurance companies, with daily quotas to see X number of patients and restrictions placed on the treatments they can offer, that they are leaving the practice of medicine entirely.

This of course does not excuse the behavior of physicians who blatantly order unneeded tests and perform unnecessary procedures simply to run up bloated billing, or who view their patients as vehicles for their own financial advancement. Such doctors do exist, and in unacceptable numbers, but can we expect more from a healthcare system that has evolved into a moneymaking Goliath, under the direction of huge corporations that routinely squeeze the humanity out of the medical equation? A system increasingly dominated by publicly traded companies whose calculations are based more on stock price than on patient care? From research labs to clinic examination rooms, the well-being of patients, and sometimes of the doctors who treat them, is being sacrificed at the altar of the Almighty dollar.

Is it any wonder that diseases seem never to be cured, but instead turned into lifelong “manageable” conditions, those suffering from them forced into a state of perpetual reliance on obscenely expensive pharmaceutical products to maintain some semblance of wellness, and sometimes even to just maintain life?

If only there was some evil cabal to blame, some sadistic brethren of money grabbers to be tarred and feathered and run out of town. But no, what we are faced with is a systemic dysfunction, a misguided medical colossus that requires only decent people doing their jobs to maintain it, even as its course runs further and further astray. It is an engine with a wicked momentum, dragging all of those in its tow to a place where everyone, eventually, will be unwitting passengers. Very few make it through this life without finally suffering serious illness, and this universal fate is what ultimately fuels the system, driving it ever forward.

Do no harm, indeed…
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  1. A Zen like grievance to this glutinous engine is unattainable.
    What are we ailing minions going to do about this charade? I for one, do not, anymore, use there services in protest. I realize this is a little Harsh, but I believe that it is time to play hardball with the powers that be.
    I will be sure to update on my endeavor to turn the system on its head.
    Sincerely, WTF

    1. What to do about this infuriating situation is indeed the question. I applaud your singular efforts, but it would take mass action on a national and even international level to start to effect change. The problem is that the dysfunction is built into the system, and is a functioning part of it.

      In the last several decades, medicine has become huge business. Before that, it was more a cottage industry, and although profitable, didn't generate the kinds of megabucks that we see today. Hyper expensive high-tech devices and blockbuster pharmaceutical products have fundamentally changed the practice of medicine, and have skewed the priorities of many involved. Even the best intentioned within the system must work within the boundaries that have been set up, and may be able to change their little sliver of the medical world, but the system as a whole remains robust.

      Unfortunately, capitalism and medicine are a poor match. I've nothing against capitalism, it's a great engine for generating wealth, but not so much in generating health…

  2. Everyone with no health problems think life is a House or Grey's Anatomy episode where problems get solved before Prime Time is over and doctors really are fuzzy and caring and not haunted be malpractice nightmares and have time for their patient....


    1. Although I enjoy shows like House, in a way I also find them incredibly frustrating in that they do give a completely false image of what's going on in the world of medicine. We'd all love to have a team of experts working on our cases, but the reality is that most of us are lucky to get 20 minutes of our neurologists time, every six months or so.

      Reminds me of the saying, "when you get there, there is no there there…"

    2. House is a comedy show. A crazy bunch headed by an comic. Hilarious when they diagnose MS, Laurie shouts that a high dose of interferon is what the patient, who probably first coughed blood, needs. The latter can then go home as if nothing happened..

    3. No wonder I never get cured. I never spew blood. My husband just met a nurse during his job, like for 20 minutes. She told him there were so many drugs and research and answers for MS now-a-days (Guess she read it in the papers). She gently suggested to him (Like someone else he knows that I get a better doctor). In an attempt to shut her up, he told her mine was an MS specialist at Johns Hopkins. My old doctor from University of Maryland Medical no runs the MS Clinic at JH. My husband pinned his hopes to trying NIH. Me, I try not to cry.


  3. ...HCA, the largest for-profit hospital chain in the United States, is revealed to have played host to a disturbingly high number of cardiac procedures (mostly angioplasties) that were found to be medically unnecessary, and apparently performed to drive profit and increase both the company’s and the treating physicians’ financial bottom lines...

    Do you think Mark that it could be the same situation for clinics offering venoplasty for CCSVI? We are still waiting for scientific proof of CCSVI in MS but there have been more than 30 000 venoplasties performed in the world by a majority of doctors who don't publish any results on this...

    1. Unfortunately, I do think that there is now enough money being made in treating CCSVI that it may skew the message. Certainly, the marketing has gotten ahead of the science where CCSVI is concerned, as the CCSVI treatment procedure has not been standardized, and in fact differs from practitioner to practitioner.

      On the other hand, if there was no money to be made via CCSVI treatment, it would never get studied at all. I guess it's a damned if you do, damned if you don't situation…

  4. I am so disillusioned and tired. I think that's the point chronically ill patients get to in order to come to terms with a disease that's progressing. I've done everything the neuro has told be to do from weekly injections, to monthly infusions to chemotherapy. I take medication for depression, bladder urgency, spasticity, vitamin D deficiency and for walking. I own five canes, one rollator, one arm crutch, two AFOs, and numerous "foot-up" devices along with two scooters. I exercise, stretch, and go to occupational and physical therapy. All of this in a seven year span. 100s of thousands of dollars rolling through the system for one MS patient.Is it any wonder they're not in a big hurry to find a cure? I'm ready to put a stop to it all of this medical nonsense, light up a joint, and see where life takes me.

    1. Great post, by the way.:)

    2. Hey, lighting up a joint tend seeing where life takes you can't be the worst idea in the world…

      It is maddening, though, to see so much money being made treating but not curing this disease. Especially since all of the treatments thus far have been aimed at tinkering with the immune system, and it's abundantly clear that a dysfunctional immune system is more a symptom than a cause of the disease.

      What to do, what to do?…

      Here's smoke in your eye…

  5. Don't leave out lawyers and politicians (but I repeat myself). I suppose at this point I feel fortunate to have no expectation of help from the medical community in the near future. They can't repair my damaged nerves, if something comes up, I'm sure I'll hear about it. I generally just focus on squeezing out the last few months or years of being able to work.

    1. I want to continue working, too. This year I hired a driver of all things to help me transport my scooter, my briefcase, and my little old self to and from work. It ate up my raise this year, but that's okay by me.