Rheumatoid arthritis, my remission,
and the business of American medicine
Their deficiencies, spawned by the system’s economic organization, might be more tolerable if doctors didn’t so often act like they had been anointed by God with special powers to save your life provided you have a deferential attitude and the right insurance.
By David P. Hamilton / The Rag Blog / December 15, 2010
Over two years ago I was diagnosed with rheumatoid arthritis (RA). According to all rheumatologists, it is an incurable and progressively degenerative disease. These alleged specialists earn an average of $224,000 a year “treating” it. They confidently assert that once you have RA, it’s permanent and dealing with it becomes the dominating feature of your remaining life.
With RA, your immune system inexplicably short-circuits and attacks your own body, particularly in the joints of the arms and legs. The onset of the disease requires a genetic predisposition and a triggering incident. Three months previous to the RA diagnosis, I had hip replacement surgery. In conformity with the apparent professional secret code to cover for colleagues, no doctor I’ve asked has been willing to speculate on the possibility of that being the trigger.
The RA diagnosis was based on several assumptions. Since I had it, it was assumed I had some triggering incident and the required gene, although I’m aware of no genetic test being done or speculation on what may have been the trigger. The hip replacement surgeon, whose specialty averages over $600,000 a year, performed his task with great technical skill, but failed to mention RA as a possible side effect.
The diagnosis of RA is not made in a casual manner. It is quite scientific and quantifiable on the basis of a blood test to determine your “rheumatoid factor”. For men, above the score of 30 is positive. At one point, I was 176. Once you’re positive, it is “standard medical practice” to never test for that factor again, based on the assumption that the disease is always chronic, so further tests would be superfluous.
When I asked for a new test after months without symptoms or medications, my rheumatologist at first resisted, but acceded to my request since she had a blood lab on site at the VA. The new “rheumatoid factor” reading was down to 27. She declined to speculate on the cause of the score dropping. A few months later, it was back to 94, but I still had no symptoms.
RA won’t kill you in a few months or even years. However, it hastens one’s general physical deterioration leading to earlier death from something else. Along the way it cripples you and makes you wish you were dead because you can’t walk or use your hands. It is also quite painful and disfiguring. Not the Last Act one would choose.
Conventional American medical wisdom is that the pace of the inevitable degeneration caused by RA can be slowed only by the use of drugs so toxic as to require frequent tests of one’s liver function, if any. Rheumatologists offer no cure and no allopathic physician ever gave me the slightest reason to hope that I would ever be well again, let alone be playing tennis and strolling the boulevards of Paris without pain.
Yet, today I have had no symptoms in well over a year, remain athletic, haven’t taken pharmaceuticals for RA for over a year and recently returned from two months in France, celebrating my remission, which included many such strolls. My last rheumatologist has dismissed me from her care “until further notice,” her way of warning me that it may return. My general practitioner calls my recovery “truly remarkable,” but has no explanation. Getting well, even if it is only temporary, while consistently rejecting medical advice was never considered a reasonable option.
Both the rheumatologists I saw recommended I take methotrexate. This drug was first developed in the late 1940’s to treat cancer. It was FDA-approved for the treatment of RA in 1988 and remains “the gold standard” of RA treatment. It was once a breakthrough in cancer treatment, but that was over a half century ago and cancer chemotherapy has come a very long way since then. According to Wikipedia, methotrexate “inhibits the synthesis of DNA, RNA, thymidylates, and proteins.” Not exactly the stuff one takes to return the body to a natural state of balance.
The first rheumatologist I saw was the local big wheel of the specialty with the big office on the central lobby of the first floor of the big private medical center of which he very likely owns a big part. First, he sent me to various of his colleagues in the facility for multiple expensive tests, sometimes of questionable necessity, thus helping enrich his co-owners who operate large and expensive pieces of medical diagnostic machinery and their collective corporate enterprise.
After this process, he prescribed the same stuff he prescribes to almost everyone, methotrexate. That’s what he does most days, over and over, for those big bucks. He looked justifiably bored. He had absolutely no advice for me besides taking that caustic pharmaceutical, only grudgingly conceding that fish oil might have some limited benefit.
When asked if walking would be a good form of exercise for me, he responded, “It won’t do much harm as long as you can tolerate the pain.” When I suggested employing a less invasive, more holistic regimen for starters, he dismissed such approaches as having “no scientific basis,” the sooner I started on the methotrexate the better, and I’d probably be on it for the rest of my life. Of course, I fired him, walking out after telling him I’d seek other opinions.
My second rheumatologist was at the local VA clinic. Since I’m a veteran and she’s a VA doctor on salary, she had to put up with me regardless of my routinely and overtly not following her advice either. Being able to talk back to your doctor without being thrown out into the street is a seldom recognized benefit of socialized medicine.
She wanted me to take methotrexate too. I again refused and requested her guidance in a more holistic approach. She willingly acknowledged having no special training in the use of “alternative therapies.” Apparently, in the official parlance, “alternative” is anything other than stuffing yourself with chemical combinations that are by definition toxic.
She did, however, loan me a book from her own library put out by the Arthritis Foundation that evaluated such alternatives. [Alternative Therapies for Arthritis by Dorothy Foltz-Gray, Arthritis Foundation.] She also gave me a stack of pamphlets describing each pharmaceutical commonly used to treat RA and asked me to decide which, if any, I would agree to take. Her attitude seemed a great leap forward, a willingness to enter into the aberrant state of patient directed medical care. Maybe she had no choice, but she was an empathetic woman, and that was progress.
I expected the book to be a smear on holistic therapies. Surprisingly, the author tried to strike a pose of tolerance, likely in deference to the widespread resort to alternative remedies by RA patients dissatisfied with conventional pharmaceutical approaches. Much of the evidence cited was inconclusive, but you could get the drift of what they thought was fraudulent and what they thought might help.
There are lots of natural anti-inflammatories, but nothing that anyone would claim cures RA. The book inspired me to buy a round of exotic supplements like borage oil and stinging nettle extract. The combination of several such concoctions did nothing noticeable about my RA but may be implicated in a subsequent attack of diarrhea. My cynicism in regards to American allopathic medicine began to spread to its alternatives.
More important, the book let slip a closely guarded secret that rheumatologists are loath to acknowledge — that some RA patients go into complete spontaneous remission, at least for long periods of time, and the medical specialists don’t know why. This is not so surprising when you realize they don’t know what starts it either.
There are various definitions of “RA remission,” one of which has the patient asymptomatic, but on the heavy drugs. These variations cloud the issue somewhat, but there are indeed a small percentage of people diagnosed with RA, perhaps as much as 10%, that experience “spontaneous remission,” meaning that they did it outside the guidelines of established medical practice. Medical journal articles on RA remission sometimes throw these cases out of their studies since they distract from their focus on what expensive new pharmaceutical might be effective.
It bothered me that until recently the most common drugs used to treat RA were originally developed to treat something else. Also troubling in my case was that RA strikes many more women than men and usually hits people before they are 50. I was a 64 year-old guy, way outside the standard pattern. My doctors offered no explanation for this anomaly. It all gave me the impression that rheumatology was less than a precise science and that its practitioners didn’t have a very solid grip on causes or effective treatments, regardless of their standard pose of all-knowingness.
The question to me was how to be among that small group that somehow got well without resort to the standard pharmaceutical regimen. There were many ideas floating about the internet, but no clear path. For example, there were numerous dietary suggestions. Many claimed their particular diet had beneficial effects on RA, but none claimed it cured it. Although some foods were suggested repeatedly (e.g., fish oil, avocados), the diets varied widely and in some cases were contradictory. There was no shortage of suggestions, often endorsed with great certitude by alternative true believers.
Over the course of a year, my body somehow healed itself despite continued positive blood tests for RA. I don’t know how. It was probably some genetic luck. I simply took good care of myself. My approach was eclectic; some of this, some of that, but not methotrexate or anything similar.
I improved what was already a very rich organic, whole grain, localavore diet, became more disciplined about my exercise routine, added some of the suggested supplements to my preexisting supplement regimen, tried to keep my stress level down and adopted a fighting spirit. Nothing revolutionary. Just enhancements to what I had already been doing, including the maintenance of our 400 square foot kitchen garden.
For almost a year I took what seemed to me to be the most benign of the recommended RA prescription drugs; an antibiotic (minocycline) and an old anti-malaria drug (hydroxychloriquine). They didn’t seem to do much except make me more susceptible to sun. I quit taking them more than a year ago, of course “against doctor’s advice.”
I also spent several hours being interviewed by a homeopathic physician (also an MD) who concocted a couple of crystals for me to ingest. His primary distinction was being the only medical professional that said he could cure me. Whether he did or not, who knows? I tossed the crystals down, added to the mix.
I have long felt that if there were such a thing as a fountain of youth, it was endorphins. I continue to firmly believe that you cannot be very healthy without a serious exercise routine, something that should take about an hour of your day, every day, and cause sweat.
With the RA diagnosis, I became a very disciplined walker, eventually evolving into a speed walker through hills, progressively adding weight to my daypack to make it harder. But like other features of my therapeutic approach, this was an augmentation of a preexisting practice, not some new feature of my lifestyle. I had been a runner and tennis player for decades.
My approach was anything but scientific. It has worked so far, but it’s impossible to know what factor was crucial or even important or that it was even anything I did at all. Perhaps I was predestined to get better regardless. But now that I have returned to an enviable state of wellness, even fitness, for someone 67, the question naturally arises: what happened? What, if anything, did I do to help cause remission? There is no way to answer that question with precision.
One factor, however, is very clear to me, and all my most trusted medical consultants agree. For me to have ever recovered not only my health, but also the ability to walk, even run, and the normal use my hands, it was essential that I rejected standard medical opinion and resisted the pharmaceutical path. That path leads to long term prescription drug dependency and a rotting liver, not back to true health.
I have come to see my wellness as exemplary of a conceptual failure of America’s allopathic medical practice. My body healing itself was simply not on their radar, because they don’t make money from healthy people who are independent of pharmaceuticals.
Doctors have no special training in the benign and natural means to promote the body’s capacity to heal itself. The intellectual monopoly of the pharmaceutical model blocks out such approaches. Conventional American medicine pays minimal attention to either prevention or enhancing natural recuperation. They’re not profitable. The focus of our medical system is instead on devising salable products that replace natural recuperative mechanisms with artificial ones, producing and distributing such products so that health care becomes a commodity and doctors are transformed into entrepreneurs.
It is an inherent and inescapable feature of the capitalist health care model that it profits from illness. The average U.S. doctor makes nearly a quarter million a year, most specialists a half a million and surgeons more. Scant few don’t become millionaires. On average, they’re the best-paid national professional group in the world. Yet, the U.S. wallows at 37th (behind Oman, Portugal, Morocco, Columbia, and Costa Rica) in the World Health Organization’s ranking of the quality of national health care systems, 74th according to the UN, and 49th in life expectancy.
Compared to the other G8 nations, the U.S. has the highest infant mortality, the most mothers who die during childbirth, the most lives lost that could have been saved, and the worst in treatment of cancer. In the American system, there are no poor doctors, but lots of sick people, bankrupt patients and 59 million miscreants without “coverage.”
Like their plan for innumerable others, my doctors wanted me to take caustic chemicals for the rest of my life while pouring my meager savings into their bank accounts for my perpetual “treatment,” a steady income source for them throughout my remaining years of worsening disability.
In the capitalist oriented American health care system, private doctors have a clear vested economic interest in patients not getting well. My chronic is their meal ticket. My wellness hurts their bottom line. How could I be so naïve as to expect them to cure me when my sickness is so much more lucrative?
The standard Western doctor operates almost exclusively on a very narrow procedural model. They order expensive diagnostic tests done by other specialists in order to determine which prescribed drug to give you. In most cases, that’s all. To a great degree, they are agents of the pharmaceutical industry in charge of customer service. Patients wait patiently to see doctors. Big Pharma reps walk right in.
It is nearly axiomatic that whenever you go to the doctor’s office, you leave with a prescription. Otherwise, most patients feel cheated. If you’re a favored patient, you’ll get some of the doctor’s stash of free samples the pharmaceutical reps have graciously left. Whatever your germ, doctors have exclusive access to the appropriate specialized germ killers. These medications, however, have high toxic potential or they wouldn’t have to be “prescribed.”
The cornerstone of American doctor’s wealth is their monopoly on the right to prescribe drugs to which the government has restricted access. If your condition further deteriorates, they “operate,” i.e., cut you open and remove or install things, a service that costs many thousands, requires the expenditure of many thousands more in ancillary products and is dangerous because the fourth leading cause of death in the U.S. is going to the hospital.
If you asked most U.S. doctors what s/he could do to improve your health besides pills, shots, and surgery, they’d be out of their element. Especially don’t ask about nutrition or exercise routines and expect an expert opinion.
Their deficiencies, spawned by the system’s economic organization, might be more tolerable if doctors didn’t so often act like they had been anointed by God with special powers to save your life provided you have a deferential attitude and the right insurance. Many an idealistic youth who set out to serve mankind by being a doctor, became seduced by the Big-Pharma orthodoxy of the training institutions. And after pre-med, med school, internships, residencies, and the related costs, developed a sense of material entitlement not matched by equally educated PhD’s.
There are, of course, legions of doctors operating in the capitalist medical system who have maintained at least some of the most humanist motives for practicing medicine. There are, without doubt, saints among them. I’m especially partial to general practitioners, pediatricians, trauma specialists, and women doctors. Many surgeons have great technical skill. Morally unimpeachable motives and competency, however, are largely irrelevant to the operating economic principals of the system.
The American medical model is systematically corrupted by its capitalist character, resulting in serious conceptual limitations. These corruptions derive from health care being a commodity instead of a right and from illness being a source of profit. A principal conceptual limitation is their failure to focus on methods to enhance the body’s natural recuperative potential, favoring instead doctor controlled pharmaceutical dependency.
The most effective and economical approaches to health care for most people involve prevention, health maintenance and recuperation. For this, important societal inputs would be nutrition education, subsides for genuinely healthy foods and lifestyles, community fitness programs, low job stress, social security, sufficient time off to pursue personally rewarding activities, and universal public health care so that people don’t neglect seeing a doctor for fear of the costs associated with getting medical care.
The problem is that in the unfettered market system, none of these components of optimal health care offer the pharmaceutical, hospital and health insurance industries opportunities for profit even close to equaling those offered by the existing model.
[David P. Hamilton has been a political activist in Austin since the late 1960s when he worked with SDS and wrote for The Rag, Austin’s underground newspaper.]
Hamilton has hit the nail on the head. The doctors believe they have been “anointed by God with special powers to save your life”. Unfortunately the left as well as everybody else tend to fall into the category of true believers, freaking out at mentions that only toxic substances can be approved by the FDA (which is why you need a script) and successful alternative (non toxic) therapies are prosecuted by the government for not being FDA approved!
Much to admire in this article by a patient who appears to have had the knowledge and determination to become an active participant in improving his own health. And there’s no doubt that American healthcare, like most industries, is informed by economic motives & factors. But I am curious where the author obtained some of his factual claims – e.g. those concerning the average income of specialists. My admittedly cursory search of the average income of US rheumatologists came up with a range of $101K to $229 K. There was a report of one rheumatologist who made $378K, but I didn’t see any “average” as high as that described by this author. And the $500K he attributes to other specialists seems to be a suspiciously “round” figure.
The figures on doctor incomes are from http://www.studentdoc.com/salaries.html
I know that if I was taught in human physiology and pharmacology during nursing school that Cholesterol medications were not effective in lower Cholesterol, only exercise was, as well as the fact that those same statin medications were deadly to the human liver; then it must have also been taught in medical schools.
Yet it is thrown at people whose levels are barely above the accepted levels.
We were taught that your own body will tell you what you need if you listen. As nurses we were trained to teach people to listen to their bodies. Instance: if you crave high iron foods, then eat them because your body is saying your anemic. If you crave sugar, then you have a glucose problem and instead of avoiding the foods, switch to slower burning, natural glucose producers.
Not to say you should not see a doctor since there could be very real and life threatening conditions. But in many cases, medications do more harm then good.
We were taught health through nutrition, drinking water, moderate exercise, allowing your body to rest the amount of time it needed, sunlight, and laughter.
So tell me why medical students are not taught the same? Or are they and only deviate for dollar signs?
While there are a few “Chronic” diseases, Mr. Hamilton is right on the money when he writes about chronic not meaning lifelong nor necessarily debilitating.
Of course, there are always those few exceptions to the rule. Such as organ failure, birth defects, etc..
But if the majority was managed with a holistic approach, one focused on prevention and cure vs treatment modalities, and taking the profit out of health care; we would be a very healthy nation.
Holding physicians accountable for the damage they inflect.
Raising the standard of care back to ‘do no harm’ and individual needs vs blanket treatment outlines for each set of symptoms. ‘throw them some pills and send them home’ or ‘cut them open’ attitudes.
A repeal of the 2002 Texas Constitutional Amendment giving power to state legislators the right to set the amounts for malpractice awards. We as patients must have a way to hold doctors accountable for their actions.
It passed by 1.1% of votes.
In my many years of health care work experience, this one act seems to have changed our health care system the most dramatically. Equal with the rise of HMO’s.
I was told by one doctor in 2004, that going to medical conventions and telling others she practiced in Texas was becoming career suicide. Our state began to be considered as the ‘safe haven’ for physicians who wanted to escape accountability. She left her pediatric practice in Texas for one in a state with higher accountability and reputation for their physicians.
The state legislation put a cap on malpractice so low that there have been no neglect nor malpractice cases filed since the amendment became effective in 2003.
I want to thank Mr. Hamilton for his honest evaluation of our health care system and those who run it.
I as many others left the health professions because we were no longer allowed to keep the oaths we were sworn to uphold.
I hope more and more ‘Mr. Hamilton’s’ start speaking out.
I apologize for my lengthy comment, but with the many soap boxes I carry in my heart this is one of the largest.
Thank you, sir, for speaking honesty in an area where dishonesty now seems to rule.
April 24, 2011
FULL CATASTROPHY LIVING – Jon Kabat Zin
My RA came on after the death of my mother and several other life stress factors, divorce, only child going to college, all around the same time. My maternal grandfather was very deformed by RA, so there was a gentic factor also. So I knew immediately when the RA came on, to test and treat.
After ten years