By 
Thank you to The Health Care Blog for this opportunity to share my patient’s
perspective on health care and how it has helped shape my new book, Original Faith: What Your Life Is Trying to Tell You. I should mention at the outset that the book speaks to human experiences and actions, not doctrine. It argues neither for nor against any form of religious belief.
My progressive illness began with the sudden onset of what was misdiagnosed for several years as Myofascial Pain Syndrome. Despite eleven years of research and medical travel, no diagnosis was ever reached. For the past several years I’ve been housebound, increasingly bedridden and essentially without access to medical care related to my condition, which includes severe peripheral neuropathy and osteoporosis, connective tissue degeneration, and special adaptive needs. My situation may be a good starting point for considering the cracks – or crevasses – in the system.
In an under-regulated health care environment where the only bottom line is the bottom line of increasing profit margins, those with long-term illnesses that are difficult to diagnosis or treat are literally not worth the extra time and effort. Here’s one example from my own experience; I could give many more.
When it was still thought that I had MPS, my insurer permanently terminated coverage for physical therapy, a mainstay of treatment. The doctor prescribing PT was one of the world’s foremost authorities on MPS. My insurer’s preferred-provider musculoskeletal specialist strongly and repeatedly objected to the termination in writing. Long story short: I had to leave my job for a new one to regain PT coverage under a different insurer.
The fundamental problem is that under-regulated, profit-driven health care has every incentive to make money at the expense of the health of the American public. It does so through a range of practices many of which now seem normative, given that we’ve had to live with them for decades. These include denying coverage for the sick – people with “pre-existing conditions” – charging them higher premiums, continually raising everyone’s premiums, and insurance policies whose fine print abounds in exclusions and grounds for denial of coverage that average citizens rarely notice until they become ill.
The obvious solution to this inequitable situation, in which Americans who happen to develop health problems are penalized in much the way that bad drivers are penalized for getting into car accidents, is a single-payer system where everyone pays premiums into the same pool and receives equal coverage. This won’t happen in the foreseeable future; the health care lobby’s influence on Washington is far too powerful. However, if you want health care to become even more profit driven than it is now, vote John McCain. Now for how my book relates to these matters…
“I have one major concern about the capacity of human life to fulfill its purpose on this planet: a certain self-selection process seems to come into play with regard to obtaining wealth and power. People with a large interest in these things are often attracted to them not for any wider good they hope to achieve, but because they have not developed any real interests beyond expanding the dimensions of their egos.”
This excerpt from the closing chapter of Original Faith highlights why I wrote the book. Our health care situation is part of a broader scenario of contemporary short-sightedness and self-absorption that’s become pervasive enough in American politics and business to have a negative impact on the well being of the nation and the world. It has begun to erode the possibilities that will be available to the children of us all.
That said, the passage I’ve quoted isn’t typical. Original Faith’s message is an overwhelmingly positive one that tries to help readers gain awareness of their own most powerful motivations by way of a writing style that is more often evocative and even literary than expository. The book is completely nonsectarian – it does not so much as assume or propound belief in God – and it contains no oversimplifications or false promises because I have no plans to run for president.
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Right – because findings of severe osteo, peripheral neuropathy, skin lesions consistent with Sarcoidosis although I don’t have Sarcoid, connective tissue degeneration including loss of padding on the soles of my feet, and gradual weight loss – none of these findings are consistent with MPS. In fact, there are no medical test results with MPS, and the only clinical finding is palpable taut bands associated with pain. I have these in abundance, and because for years there were no other findings or symptoms, I was misdiagnosed for several years with an unusually widespread MPS.
Paul,
Thank you (hope you are still reading this).
If there is no good overarching diagnosis, how can one rule out MPS? Because there is a diagnosis of neuropathy based on EMG or skin biopsy?
Best wishes!
Vivian, makes sense to me, and that’s true – my situation as sick/severely disabled is a subtext to the book that’s subtle and very much in the background, though integral to the rest.
Berry, I know what you mean. At one point, several years into my illness, I realized that if I recovered I was absolutely going to want to become involved with the sick, the old or the dying. And keeping a sense of humor is, from what I’ve seen, indispensable. The harder things are, the more critical it becomes.
well, Paul. From everything you’ve told me, this is a one way ticket. My small mission in life seems to be to find what light I can and bring it to folks who, sometimes, are on that same ride with you.
Catherine Miller, a 92 year old self professed ‘wild woman’ absolutely captured my heart, and I would go to her ‘home’ place and do the best I could to make her laugh.
Another case would be Lee Mehrlich, a sixty year old sufferer of Cerebral Palsy. Being dilexic doesn’t help his situation much, either. He can’t read or use a standard alphabet, and instead utilizes something called BLISSYMBOLICS, which were put together by a fellow many years back trying to create a language for international use.
In any case, again, I make it my mission to make this guy laugh.
My God, his earliest doctors had tried their best to convince his mother into creating a situation for him to die….claiming he probably wouldn’t live past four, anyway.
I told him that on his sixtieth birthday (last July) we should look up where his doctor is buried and go laugh at his gravestone.
(is there a question, here?)
How far can a walkie (that’s what we call ourselves, I’m a walkie and he’s a wheelie) how far can a walkie go with a person who is in some way or other a wheelie?
You, for example.
Or Catherine.
She said I made her laugh so hard….and she loved it.
I think Lee likes it.
But, basically, how far can I go?
Catherine, by the way, passed away three years ago, and I tried to get Mildred Kuhns, a 95 year old to lean over the casket while folks were ‘seeing’ the body, to lean over and say, “…and she was such a young thing, too.”
Mildred laughed.
I do medical care for inner-city patients in the Bronx, NYC–most of them have Medicaid, which is single payer. I dread it when a privately insured patient comes in my door–$20 or $30 patient up-front out-of-pocket charges for each office visit or prescription, different paperwork forms for each insurance company, restricted medication and provider choices that make no sense, and no-one even has the medication formulary, provider list or the forms. Those patients are people who are working at minimum wage six or seven days a week, and therefore disqualified for Medicaid. They are still better covered than those with no health care at all. Those patients I don’t see because they can’t even afford the fee to get in the door. (Or if they do, they can’t afford any lab testing or, god forbid, surgery!)
I want to stay forever in the golden land of single payer health care, where I can order testing, medication, specialist referrals, surgical procedures, strictly on the basis of medical need…
By the way, Paul’s book is a must-read for anyone who finds the “real world” is getting you down–I pick it up when I need a re-charge! (It’s not about illness, it’s about how to find the faith to really LIVE…and he’s a very “up” person, in case you were wondering!)
Thanks for all these observations – and interesting to get some international perspective…
Rob,you write “When I became ill some years ago, worrying that I’d be denied coverage, I approached my employer’s HR department, wishing to see our HMO’s contract and its provisions. That was considered confidential information.”
That’s one I hadn’t heard of, though it doesn’t surprise me. Seems like it, like so many other practices that are allowed in this area, ought to be illegal.
“Mr. Martin – I feel very bad for the horrible circumstances that you’re facing. I hope things turn around and you find a better quality of life. I don’t agree with the single-payer solution, but that’s a matter I wouldn’t be comfortable debating with you because you’ve been through a lot and you have good reason to demand solutions.”
Deron, I think the present health “system” has about made Mr. Martin pretty much immune to getting his feelings hurt. Maybe he would appreciate how, within the present system and not with single-pay, you would fix his problem? Why don’t you be blunt with us, we can take it.
Hi Rbar, thank you – the link’s OK now.
No dx was ever arrived at.
One small additional observation: When I became ill some years ago, worrying that I’d be denied coverage, I approached my employer’s HR department, wishing to see our HMO’s contract and its provisions. That was considered confidential information.
So not only are people not aware, at least in this case, I wasn’t ALLOWED to be aware of what holes there were in coverage. And this was in the mid 90s. Goodness knows what it’s like now.
I just assume now that whatever happens to me, though I work for a hospital system, and I pay for “insurance,” it won’t pay for anything. It’s just for show, far as I can tell, so they can attract employees.
This is sad, and those who argue that I should make healthy decisions and blah blah blah never answer the question “what if I got hit by a drunk driver, or got cancer? Is that my fault too? Should I be punished for being unlucky, too?”
No, that’s too hard. It’s not a Puritan, moral, black and white ease into condemnation and punishment. Money grinds bones because we let it. It can’t do it without our help and collusion. When will we stop asking “how can I make this cheaper” and start asking “how can we excel?”
Stop it. Please.
Mr. Martin – I feel very bad for the horrible circumstances that you’re facing. I hope things turn around and you find a better quality of life. I don’t agree with the single-payer solution, but that’s a matter I wouldn’t be comfortable debating with you because you’ve been through a lot and you have good reason to demand solutions.
However, I would like to add to one of your comments. You mention the prevalence of short-sightedness and self-absorption in politics and business. That is an incomplete assessment, as those are qualities of our society as a whole. They just happen to more publicly manifest themselves in those arenas. If we want to change that, we need to start with ourselves.
Thank you, interesting post.
As a side note, you certainly raised my curiosity what progressive illness you have been diagnosed with (I see quite a few patients with chronic pain). By the way, the link does not seem to work.
It seems outrageous to me that peoples healthcare should be based on insurance which is selective as you describe. Here in the UK a system was recently brought in for community rehabilitation that people who have a long term condition and need to use the service frequently, would have automatic open access, This was very welcome as an improvement prioritising those people with the greatest need. What you are describing sounds like the opposite of this.
Although there always room for improvement and where resources are limited there are difficult decisions to be made but I think on the whole we have an excellent sytem here. Surely resources should be allocated where they will have the greatest overall benefit and by that I mean quality of life for people rather than economic benefit. There can be no other questions asked or judgements made. I am only speaking from my own experience of working within the NHS but from this viewpoint it seems to have worked very well here so far.
Enough to make you sick! The health system in Australia is slowly moving toward the US system and I don’t consider it progress. There are some things that a government should run – health and finances to name two – otherwise why have a government at all? I’m looking forward to reading your book when it arrives. Run for president, I’ll vote for you. Well, no, I don’t get a vote I guess but I would harass those I know who do to vote for you, which is almost as good.