Spirituality & Adversity with a Healthcare Emphasis: II
Stigma Health Care
The movie Sicko’s made the headlines; I’ve lived the life. With presidential campaigning underway and health care a subject on people’s minds, what follows is a real-life illustration of the sort of thing that can go badly. It’s one of many personal illustrations that I could draw upon from my past thirteen-plus years of progressive illness/progressive disillusionment with our health care system.
But this is much more than personal. I had what anyone would regard as an excellent group plan from a major insurance corporation. And the policy language that was used to block my access to care is standard, boilerplate insurance contract language.
Early in the course of my disease, I appeared to be slowly recovering from something that years later it would turn out I didn’t have. At the time, however, my case presented as a widespread or “diffuse” case of Myofascial Pain Syndrome – a rare condition affecting the muscles.
That’s when my insurance – let’s call them “Stigma Health Care” – permanently terminated coverage for the one treatment that appeared to be contributing toward my recovery. The doctor attempting to prescribe treatment was one of the world’s leading authorities on MPS . Stigma’s own preferred provider in my local area had also written to Stigma with increasing outrage over their denial of benefits.
More Clause, Less Santa
In the end, after a year and a half of struggle, all efforts proved futile. It turned out that my insurance policy contained the clause quoted below. Later, when I got new insurance, I found that my new policy contained almost the same language word for word. I’d say the health insurance industry has a pretty effective lobby in Washington:
"The fact that a physician may prescribe, order, recommend, or approve a service or treatment is not sufficient for such service or treatment to be considered medically necessary by the Medical Director."
A bureaucrat who had never set eyes on me decided that my further treatment was not “medically necessary” – the form letters simply kept deploying that phrase again and again without so much as pretending to engage with the reasoning of my doctors. I received the final letter permanently terminating my benefit on Christmas Eve or Christmas day; I no longer recall which, but distinctly remember the sense of holiday surprise that came to me and my family that year. The clause allowed Stigma to legally overrule the combined efforts of their own local physician specializing in musculoskeletal disease; the major health care advocacy reform organization in my state; efforts at mediation by the NEA; and the orders of a doctor to whom people from literally around the world travel to be treated for MPS.
Stigma didn’t negotiate because Stigma didn’t need to.
Next Up: Initial effects of my “Stigmatization”: “Partially Unglued…”
The movie Sicko’s made the headlines; I’ve lived the life. With presidential campaigning underway and health care a subject on people’s minds, what follows is a real-life illustration of the sort of thing that can go badly. It’s one of many personal illustrations that I could draw upon from my past thirteen-plus years of progressive illness/progressive disillusionment with our health care system.
But this is much more than personal. I had what anyone would regard as an excellent group plan from a major insurance corporation. And the policy language that was used to block my access to care is standard, boilerplate insurance contract language.
Early in the course of my disease, I appeared to be slowly recovering from something that years later it would turn out I didn’t have. At the time, however, my case presented as a widespread or “diffuse” case of Myofascial Pain Syndrome – a rare condition affecting the muscles.
That’s when my insurance – let’s call them “Stigma Health Care” – permanently terminated coverage for the one treatment that appeared to be contributing toward my recovery. The doctor attempting to prescribe treatment was one of the world’s leading authorities on MPS . Stigma’s own preferred provider in my local area had also written to Stigma with increasing outrage over their denial of benefits.
More Clause, Less Santa
In the end, after a year and a half of struggle, all efforts proved futile. It turned out that my insurance policy contained the clause quoted below. Later, when I got new insurance, I found that my new policy contained almost the same language word for word. I’d say the health insurance industry has a pretty effective lobby in Washington:
"The fact that a physician may prescribe, order, recommend, or approve a service or treatment is not sufficient for such service or treatment to be considered medically necessary by the Medical Director."
A bureaucrat who had never set eyes on me decided that my further treatment was not “medically necessary” – the form letters simply kept deploying that phrase again and again without so much as pretending to engage with the reasoning of my doctors. I received the final letter permanently terminating my benefit on Christmas Eve or Christmas day; I no longer recall which, but distinctly remember the sense of holiday surprise that came to me and my family that year. The clause allowed Stigma to legally overrule the combined efforts of their own local physician specializing in musculoskeletal disease; the major health care advocacy reform organization in my state; efforts at mediation by the NEA; and the orders of a doctor to whom people from literally around the world travel to be treated for MPS.
Stigma didn’t negotiate because Stigma didn’t need to.
Next Up: Initial effects of my “Stigmatization”: “Partially Unglued…”
Posted by Paul at 10:37 PM Permalink
23 Comments:
This is one reason why I think the government should handle health care and make it universal - right now it's a business with profits as the only goal.
What has been your experience with not having a firm dx in regards to the insurance companies?
Unrelated rant....Many people think that the uninsured/underinsured are perhaps unemployed hobos or something, I think. They don't understand that there are many groups of people who make their livelihood at professions that are nearly impossible to get reliable coverage. Anyone who is self-employed knows this. Anyone who is an artist, musician, writer, actor, dancer, performer, film or theater professional or in any sort of creative field is taking a roll of the dice that they won't become ill during the formative years of their career. When my extremely talented nephew decided to go off to art school...I begged him not to. I'm not sure that we realize that we actually lose people and talent because we don't take care of artisans and craftsmen. Or more likely...people don't care.
And after saying that, I feel change is in the air...
The state contracted with a physician from the area in which the office was located to go over these cases which involved the possible need for medical treatment etc. to screen out any medical treatments that in his professional opinion he thought were not needed. We knew the doctor who was contracted to work with my husband's office. He was a family doctor.
What I am saying is that even the government is going to question whether medical treatments or procedures are truly needed and will do some good. They will do this to eliminate fraud, poor medical decisions, questionable treatments and so on. They don't want to waste money either. I don't think there is any way to get around that sort of accountability whether in the private sector or with government programs. But I am truly sorry for the bad experiences you have had with the system Paul.
Seems obvious to me too that whether we go with a single payer system or continue with more or less privatization, the role of government needs to be more than rubber stamping the self-serving rules that the industry itself lobbies for.
ROSIE: I spared people the details (there’s more under my “HMO Horror Story” at hmoappeals.com), but you’re bringing up one of them: nothing in my contract excluded the benefit in question by condition. Everyone who looked at my policy – lawyers, mediators, physicians – said that nothing in the language relating to the benefit allowed them to terminate it.
But it would take at least a post to discuss why trying to legally remedy something like this is rarely feasible – again, more detail at my other site.
To me your “rant” actually points squarely to a central problem: tying insurance coverage to employment. Increasing numbers of people are working from home, working as temps, changing employers and careers – in fact it’s pretty unusual for someone today to work for decades at one place and then retire. So the tie-in with employment can only become increasingly problematic.
On your question: because I had a health problem, I signed up for the best plans my employers had to offer. And I did have a firm (mis)diagnosis for several years and was never excluded based on the condition. Even after doctors reached the point of saying they couldn’t clearly identify the underlying condition, my severe osteo, neuropathy, spasm/taut bands throughout my musculature, wasting away of connective tissue, weight loss and skin lesions were apparently plenty enough to prevent outright denial of care. (The adequacy of that care has been a whole other matter and again reflects what I guess you'd call "best practices" in today's insurance climate.)
HISTORICAL WIT: My take on your statement is that people shouldn’t be penalized for getting sick – for example, by companies devising clever ways to deny claims or charge the sick higher premiums.
I think we should all be paying into whatever the system is, hope we don’t get sick, but know that if we do, we’re covered - because, like everyone else, we’ve been paying into the system all along.
I’m not convinced that profit has to be removed from our system – I’m sure that it won’t be – but surely, in any case, the system needs to be planned and regulated in such a manner that profit comes from conducting business in a socially responsible manner that does not include profiteering at the expense of the sick.
MARK: I can't argue with any one of your points.
LUCY: I don’t know what outcome could have been worse for me than having coverage for treatment that was ordered by a world class physician and seconded by my insurance’s own preferred provider permanently terminated by a doctor/bureaucrat who thereby in effect practiced medicine without ever seeing me. Strictly as a matter of medicine it should be illegal to practice medicine this way and in fact it is – unless the doctor happens to be employed by an insurance company.
CRYSTAL: Less and less, but at least theoretically, you’re clearly correct that it's government that is supposed to be responsible to we the people. In contrast, our for-profit health insurance and pharmaceuticals industries are necessarily responsible first and foremost to shareholders.
SUSIEQ: Genuine accountability is exactly what’s needed. Just as you say - to eliminate fraud, poor medical decisions, questionable treatments and so on. If you look at the arrangements behind the decision-making that I’ve described in this post – they’re more simply delineated in my reply to Lucy above – that’s exactly the opposite of what I experienced and what millions of Americans experience with the fox guarding the hen house.
Caveat: A person is NOT allowed to see a medical professional unless they can prove that they (or their legal guardian) have paid in to the system.
Keshi.
This is the claim, the truth is not compassionate conservatism but rather cruel and uncaring, survival of the fittest treatment and actions and outcomes.
Insurance is founded in this nature, vicious, cruel, ugly, and unthinking on the human level, all just mechanical robotic angelic behaviours and systems. So is every other capital endeavour.
I hope you have some remedy somehow, I know it ain't easy.
Thanks for the visit Paul, I will return and read some more as time goes on. Thanks and G-d bless you and yours, may better be with you.
There will still be "in" diagnoses and "out" diagnoses. Yet, even then there should be a safety net that minimizes patient suffering. Of course "suffering" is another loaded word open for interpretation.
For all I know, this would just dig the whole deeper. But, I agree with others...change is needed.
I’d like to think so - but I’m skeptical that it will actually take place because of the large political influence of the insurance lobby. My best guess is we’ll be lucky to end up with a few marginal improvements in certain areas where the insurance industry is willing to make some minor concessions because of increased public awareness – for example, having millions of uninsured children hits a raw nerve with lots of people, so maybe we'll end up providing some increased coverage there.
So basically I’m inclined to think that what we’ll get is plugging a few leaks and applying a little duct tape here and there instead of a rational look at how and why the boat as a whole is taking on water and how this could best be addressed systemically. Hope I’m wrong.
KESHI: I see what you mean – it must look odd from non-US perspectives that a nation with such power and wealth can’t manage health care access any better than this.
JIM: That’s what I think too – that as big business has heavily financed and lobbied government to get around constraints, our politicians, instead of acting pragmatically, tout capitalism as an ideology in much the same way that communists once propounded their ideology. Imo, either way is dangerous – whether you’ve got government stifling business so that people lose their incentives or big business influencing government so heavily that nobody’s paying attention to the public interest. And either way, pure ideologues just happen to end up serving themselves – obtaining an increasingly disproportionate share of the nation’s wealth.
N2: I didn’t run into any problems when I was under the misdiagnosis of MPS that related to that diagnosis per se. However, you raise a good point.
In extensively researching MPS, my sister and I ran into one or two papers by physicians who didn’t “believe in it” – which ran contrary to the great preponderance of research, probably because, for doctors trained in muscle palpation and how to perform trigger point injections, objective evidence is there to be found.
However, people with other poorly understood conditions, for example Fibromyalgia and Chronic Fatigue Syndrome, have it worse because of the lack of objective findings and because the misinformation distributed by the insurance industry and those physicians on their payroll includes great exaggeration in the public mind of the extent of hypochondria and malingering – as if significant numbers of folks in the prime of life suddenly develop an urge to spend their disposable income on medical expenses and use up their free time reading People magazine in waiting rooms. Let me tell you, it’s a thrill and all well worth it just to get those seven minutes of intermittent “attention” from an overbooked doctor with a jangling cell phone because his HMO pays him based on the number of patients he sees in a week.
Govt is least bothered about health.
Thank you for visiting my blog and the comments. Your words have made my day - your words have made OUR day (I am talking in a name of all Art therapy club Modus Vivendi now)
You are absolutely right – the faith and love help us to survive even in the impossible situations. Plus. The spiritual giants are the daily guests in the world of the people with disabilities- the magnificent Spirit is used to indwell the temples of the week, and therefore those who look week at a moment become the winners because of their readiness to listen to the eternities and the gratitude that is shared by the temporally dependant giants
I just received a “time sensitive” task, as they say, and will be delayed responding to comments and emails until I’m guessing Mon or Tues next week.
New post will go up as usual late Sun or early Mon; it’s already been written.
Thanks!
My husband recently had to have gall bladder surgery. We are on an HMO and we had to use the doctors that are in their system. Most of the doctors were great, but the one that actually did the surgery was one that I never would have picked, if I had had a choice. I know that in a government run system we will have less choices than we already have and I don't like that at all. I just know that I don't want the government being my "director"....
Lets hope that we can finally vote in universal health care. It isn't going to be easy, but we HAVE to do it - the current system is insane.
Just returned from Sweden, the subject came up several times - they can't understand why we put up with it - even the best medical care in the US is no longer *world class.* We're something like 27th ....
I live in America 5 years.
Last week I watched Oprah's show with Oscar-winner Michael Moore- "Sicko".
I couldn't understand everything but I think that it will be better maybe very soon ( or maybe I'm so naive, as I said I live here only 5 y.)
In countries such as Canada, France and the United Kingdom, patients do not have to pay medical fees out-of-pocket—healthcare is a government service - he said.
( in my country people do not have to pay too).
The healthcare crisis has become a hot-button issue in American politics. As bills pile up, the cost of medical care is the number one cause of bankruptcy in the United States. On average, treatment for a brain tumor costs $200,000. A stroke—$140,000. Leukemia can cost up to $600,000.
(from show)
Would you be covered?
I cannot imagine -
My grandson is suffering from Leukemia (this cost will be about $300.000). I not say that my son will be pay, but I can say that it is impossible for him to pay it.
I'll be back read more from you.
Very interesting post and comments.
Take care!
As far as overruling the decisions of patients' doctors goes, it seems to me that this should never be done lightly or arbitrarily. No insufficiently trained bureaucrat or one with a conflict of interest ought to be making such decisions, whether the theoretical government bureaucrat you mention or the real-life bureaucrats employed by insurance companies today who frequently make the sort of irresponsible medical decisions I’ve described due to their conflict of interest.
MISTIPURPLE, good to see you. As far as praying for good health goes, I don’t know as there’s much indication that God manages care! A lot of people do pray for health; I’ve done it myself at some points.
But sooner or later everybody gets really sick and dies. And I’m not aware of any unbiased scientific studies showing that any particular religious group lives longer healthier lives because they pray for heath and have the right connection with God.
Come to think of, except I guess with Christian scientists, the first thing just about anybody does is try to address health problems medically and not with prayer. If the problem is small and obviously resolvable, you don’t even think about praying – for example, please make this dental filling take, lol. It’s just when things get dicey that we think about God taking a personal interest in the treatment of our bodies.
Plus, if God does answer prayers for health, he clearly doesn’t answer them all. Religious/prayerful people can lose their health too. So instead of asking God to pay attention to my health problems, I’d find it more responsible to ask God to answer the prayers of, say, some little kid who has his or her whole life in front of them. If we have to pray to get God’s attention, I’d rather add to the little kid’s attempt to get some medical attention from God.
HAYDEN: Exactly. I don’t understand how anyone can be in favor of just preserving the status quo. There’s no good rationale for the most prosperous nation on earth having a second rate health care system that fails to serve and underserves many millions of its citizens.
KRYSTYNA: Five years, it’s true, may not be enough to see how things really work around here. Basically, in the run up to presidential elections, there’s always all kinds of talk about solving all kinds of serious problems – campaign financing, the environment, health care etc. After the election, nothing or very little happens. So I’m frankly doubtful about the possibility of substantial health care reform. The insurance corporations have all our politicians by the wallet – that would be the campaign financing and lobbying problems – including the politicians who make the nicest speeches. The way big money finances our political campaigns has made US government highly responsive to the wealthy and increasingly unresponsive to average citizens.
“The cost of medical care is the number one cause of bankruptcy in the United States.” I sure can believe that. Now in my fourteenth year of progressive illness, I’ve never tallied the total financial cost to me – it would just be depressing. It’s had a tremendous continuing negative impact on my finances. Basically it’s left me with no “disposable income.” If hadn’t become extremely frugal I’d have gotten into massive debt many years ago.
GAUTAMI: But we do need to compare apples to apples. If I’m using the terminology correctly, there’s the “developed, developing, and… underdeveloped? (very poor economies)” worlds. While US medical care has some obvious plusses, like first rate medical technology and medical schools, in terms of access to care by citizens, it compares very badly with the rest of the developed world and even with many developing nations.
TOMAS K: Thanks for stopping by and glad you all liked the comment. The rest of your comment here puts me in mind of a topic that could be a post in itself. Also, if you’re someone who’s sent me an email lately, sorry I’m so slow responding. Hard keeping up with my email because of being semi bedridden – more bedridden than not.
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