Sunday, July 20, 2014

Field Notes From a Lagging Indicator

By William Neil



Introduction:

Anyone with a social conscience or who has just followed the news since 2010 knows that the struggle for decent health care is not an issue that can stand isolated from other intimately intertwined factors, although our medical and political system tries to keep it that way. My tale  is not unique….it has been already lived by millions if not tens of millions of others, and the pattern by now has become a familiar horror story, if not a drill: a medical crisis leads to an income crisis which leads to a housing crisis…which can in turn create a further medical crisis.  My situation is not the worst, but it is mine and it seems bad enough, so I thought I would share it with Sardonicky readers because living it out in silence does no one any good, and indeed, seems to me to be a form of acquiescence if not complicity with the status quo.  

What follows began as a dialogue triggered by an essay recently sent out by William Greider on the failures of the Democratic Party…I shared my response with those on the Email list and it turned into a dialogue with one of the recipients on the efficacy, or not, of our new health care system, the ACA. From my email sent out earlier this month:

“Thanks for getting back to me.  Just for the greater public interest and your own education, my private life and struggles are now going public, and I've increasingly been working that perspective into my last four essays, over the past three years.  So here are my facts, and I won't take them any further than the Affordable Care Act’s reality for me.  I hope the President's plan has been able to help millions.  

I receive early SS retirement, reduced amount, out of economic necessity, well under $1500; I receive a small NJ pension under $500 and work part time at Target for $8.97 per hour.  As my second year evaluation rolled around in April, I received a 22 cent per hour raise bringing me to that figure.  I got a good evaluation.  My 2013 gross income was just under $34,000.  I am single, divorced.  I applied for the OCA (That should be ACA but I guess the “O” for Obama, does just as well) on Dec. 17, 2013 plugged in all the numbers on the Maryland Exchange and was told quickly and bluntly that I did not qualify for a) Medicaid (income cut-off 14,000) and b) any subsidy. 

Now I live in one of the most expensive counties in the country, Montgomery County, MD but none of these calculations take that into account, only the income.  The County Council's own numbers show that the minimum wage required to be out of poverty is $17.50 per hour.  I finish most months with only $100-$200 to spare, sometimes less, and have been living on the edge that way for two years now.   I haven't missed a credit card payment yet, but my two bills for the cards are $140 each and bound to rise as the $20,000 in medical bills, or more, is, as slowly as I can manage, added to them.  My rent is 1,450 per month and I have to pay all utilities.  I still owe my landlord for several months’ rent when my savings ran out three years ago and before the Social Security arrived and I had to go back to work.  I live at his forbearance on a month-to-month lease and have, most months, paid him what I can spare as “back rent” owed.  

For further economic clarification, and in preparation for testimony before a Republican ethics committee on debtors and personal character, I have not purchased a single appliance or capital good for the past ten years; two pots and pans and a computer (replacing an eight year old one, and a necessity in modern life) in 2011, which went, along with car repairs, auto insurance and vet bills for my beloved Josie, a Belgian Malinois now deceased, on the credit cards out of necessity.  My last vacation was 2006 and I didn't pay for it.  My car is 14 years old - a VW beetle from much happier times.

So when my heart crisis arose out of the blue (I've never smoked and don't drink) with no prior history...here I am.  Over the past week I've spent hours on the phone to utilize the "life event” (I guess they don’t like to use the word crisis, which is surely what it is) clause of OCA in MD, and the drop in income at Target of 50% means I can get a subsidy of $333 per month on the premium and 73% on the co-pays and deductibles...but the only plan I can make is still $165 for the premium plus 900 deductibles and 5200 out of pocket (reduce them by 73%) plus whatever the plan is on drugs (I’ll pay 20-30%).  So very helpful, but still an additional expense with my reduced income and other fixed costs. Ah, I forgot to add an important detail: failing to qualify for ACA/OCA in December, I was planning on picking up Target’s medical coverage for part time workers, at a pretty affordable rate. Unfortunately, they dropped it entirely in the early winter of 2014.

I spent most of today on the phone with our Montgomery County's housing assistance programs.  We are one of the most progressive and sophisticated county governments in the nation.  There is no additional money, long waiting lists (years in some cases) and/or lottery luck for any/all of the housing problems.  Summary: no help on the horizon and none likely to arrive.  If I get an eviction notice, I can get emergency help for one month rent and security deposit...but there are no available public housing places...go read the private want ads was the advice. The system, as one neighbor told me, gets you a little more help when you are homeless, surrounded by your belongings, sitting  in the middle of the street – destitute, in other words.  In preventing that destitution, there is almost no help, and women with dependent children will, rightly so, be first in line.   I told the social worker that I would kill myself before entering the group shelter system.  He seemed to take that easily in stride.  I don’t know if that is courage or cowardice on my part, and I won’t know until if and when I stare that situation in the face.  And I guess it will depend on your  point of view.  I’m trying now not to have that staring match.

I live in the smallest one story house type in the entire county built in 1953: about 1100 sq. feet.  I don't know if I can survive, if I can find, a small one bedroom apt. near me - they all seem to be 1200-1400 dollars....no help.

So that's the story.  With a great deal of luck I can make the August rent, no way September.   I have no criminal record, great driving record (although my eyesight is now going downhill) and have 1400 pages - or more than four large books - in essays written over seven years ...you've seen two brief unpolished samples...Such is the state of my state, and our social service "net" for someone in my circumstances at age 64.  If the heart troubles (two bouts of angioplasty) don't kill me, the stress of just facing this reality probably will.  When I was discharged last week from the hospital after my first operation, I saw the listing of psychological factors contributing to heart disease centered on various types of stress.  I scored an A+ on each of them…the basic facts of my life over the past nine years.

And I apologize now for using the term medical "Gulag," that is not the best description.  

My mounting waiting room experience though, the beaten, bent people who are being shepherded through a very impersonal system with high technological capabilities and very low humanity treatment ones,  leaves me still with the sense that I am in a vast "refugee" flow...that's what it feels like...my appointments aside from the one hospital procedure and one due next week led me to this vision: rather than a "Gulag,"…the complexes where I get diagnosed, blood and credit drawn out of me...are in sprawling one and two story office complexes that go on for square mile after square mile around Shady Grove hospital...like the old industrial towns of Newark, Philadelphia,  Camden and Detroit in their glory days,  there is a vast subdivision of labor and practice which fragments the experience and ups the demands on patients.  It is industrial medicine and I had no idea of the tremendous and confusing physical network which surrounds the hospital. 

 My last trip to the blood lab, yesterday, went like this:  I saw my cardiologist Tues...he said you need this blood work, and  have to fast ten hours; I went to the Quest firm, right next door; they don't have a receptionist or an office manager it seems, they all multitask, but I couldn't verbally set up an appointment, face-to-face at their office,  I had to call and go through an automated system.  When I finally set it up, two days later, and when I went in after fasting at 9:30 for a 10:00 appointment…they said they had no record of it...but took me anyhow after a 35-40 minute wait.  The person who drew the blood had a credit card machine right in the examination drawing room; I told her I only wanted to put $50 down, but the system would take only the full swipe for $306.  We made each other laugh with the absurdity; but that afternoon I left critical comments about the low morale, lack of receptionist and no office manager to keep it going – and praised the humanity of the worker, caught, along with me, in this vast system of extraction.  And reminding them of the outrageousness of the credit card machine in an examination room....

That's all for now, thanks for asking, I needed to get this word out.  My "samizdat."  I really don't know if I will make it and only the  glimmer of the hope that I can tell the story, almost as it happens in real time,  to change what others might have to face,  keeps me going. “

Best,
Bill Neil
Rockville, MD
 
PS  I have emerged alive from my second round of angioplasty, or cardiac catheterization, in technical terms.  I tried my best to keep a sense of humanity alive in all my interactions with so many people caught up in this vast system, and I had some wonderfully frank exchanges with nurses, aides and cleaning people.  In some ways, I was working to keep their spirits up, besides my own, knowing a bit about “life on the job.”  But I failed on the last day, after my overnight stay, waiting and wading through the prolonged “discharge process.” It was the knowledge, beyond my own health and the medical aspects of the hospital, that upon my walking out of that recovery room, I would be heading down to visit the “charity” application office for help in dealing with the vast bills I had accumulated without any medical “coverage.”  I knew better, the full risks of not having insurance at my age, of skipping check-ups and all the tests that ought to be run after one turns 50-55, much less 60.  And I had lived with and been married to an emergency room doctor myself, a wonderful woman…but the bleak, on the edge finances of the last five years of my life overruled all, seem now like a vast, blind driving fate I could not overcome.  And the last part of my body that I thought would let me down, my heart, had done so.   So I was angry and yelled at the nurse’s station that after their good medical care I was going to face the grim financial reaper, that was the other side of it and I could not suppress the anger.  My discharge nurse then gave me a pep talk about keeping a “positive attitude.”  She was very, very good, in retrospect, but that wasn’t her best moment – nor mine either. 

***

(Ed. note -- I'd also like to direct readers to this recent essay by activist and writer Bill Neil.)

14 comments:

James F Traynor said...

Damn.

Pearl said...

Dear Bill: Having gone through heart surgery myself I can sympathise with all your problems. I had mine done in the U.S. as we had a winter home there and being U.S. citizens I was able to get complete coverage with Medicare when it was necessary to go ahead rapidly. (that was l6 years ago)and medicare no longer covers everything.

My main work with Karen and gang involves reporting the facts about the miserable excuse for health care for average citizens in the U.S. as opposed to our basic system here in Canada. Although it is not perfect it works exceedingly well for anyone living here as a citizen or a permanent resident which I and my family are the fortunate recipients of.
I have studied the two systems during university courses some years ago and have kept up with all the details involved and it pains me enormously to have to read what you have been subjected to in the country of my birth.
Knowing you are not alone only makes it more inexcusable.
Thank you for sending us your experiences and I know everyone at Sardonicky will be as supportive as possible. You inspire me to continue on with my work and besides being able to work with some wonderful human beings here, it makes me feel that there are indeed fine people in this world such as Karen and company that make it easier for us to not lose our hope for a better world.
Please keep in touch with us on how you are coping and managing and if you can, spread your medical experiences far and wide.
If you wish to contact me personally Karen can give you my e-mail address. You have all my sympathy and admiration, Bill.Take good care of yourself.

Denis Neville said...

Thank you for sharing this, Bill. Your story is all too familiar to me, professionally and personally. Every American is just one major illness away from bankruptcy.

The health insurance system in the United States works great, as long as one stays healthy. It's only people who need medical care who have problems.

The Obots say that the 30 million people who got thrown under the bus should be happy and grateful because 26 million got covered. “Hope and change” converted to “I’ve got mine!”

The infliction of cruelty with a good conscience is a delight to moralists. The hospital chain I worked for turned over unpaid medical accounts to third party bill collectors. It didn’t care if someone had few financial resources, if they were chronically ill and unable to work anymore, and so on. It wanted their money. Over half of all collection accounts on credit reports are related to medical bills.

People can drown in a bathtub just as efficiently as they drown in an ocean. Ten thousand dollars of medical debt can break someone just as easily as 100 thousand dollars can.

Those with money can pay. Those without the means just die. It is a travesty of social justice. No truly developed nation would tolerate such an injustice, regardless of the cost. Health care, being a basic human right, should not be a business. It should be a public service.

Obamacare forced people to buy junk insurance or get in trouble with the IRS. That junk insurance won’t get the care that many need because the business model of our health insurance industry is to profit by denying care. Pay nothing and not get care, or pay a quarter of one’s income and still not get the care one needs? Jeez!!!!

Bill Neil said...

Thanks everyone for your kind thoughts and support. It's experiences like this that teach us the limitations of "individualism" and the price we pay for lack of community and lack of a better "social contract."

I spent yesterday toting up my medical bills in preparation for my "charity" care appeal and the bill from the hospital, which they said was not a "bil" but had clear itemization amounts without dollar signs (we don't want to appear too monetary ,do we?)...came to $18.000 for the procedure, and a one night stay. I had a second one last week,so add in another $14,000 or so...

That'll do it just fine. Then there' ongoing follow up treatment, drugs galore for heart patients...My ACA coverage if it kicks in, won't start until Aug. 1, so I don't think it will reach any of these expenses. I'd like to say that its all a learning experience, but at 64, school's been out for a while now. We can all take inspiration from Pearl's experience though, puts me to shame.

Best to everyone, I'll try to keep you posted. And thanks Karen for getting the word out...

James F Traynor said...

This is Mafiosa stuff - the way they operate - or used to. The 1% I mean. I learned a lot in the Bronx, mainly from observation and the experience of others. It's helped me navigate over the years - a chart to navigate the shoals. But I'd be a fool not to think that luck counts one hell of a lot.
And it's funny how people forget

James F Traynor said...

Just dropped my wife off to get a couple units of blood. From experience this will cost a tad over $1500 but we have good insurance. Her chemo is costing a small fortune, but again, good insurance. I'd guess you'd say, continuing to use the metaphor, she's run aground, but I'm able, being in good health, to help her and there is, above all, the insurance.

I can relate to Bill Neill, we were in pretty much the same racket; I was an ecologist and wildlife biologist, married to an RN. I could have easily been in his position, but I had the 'good luck' of not getting prostate cancer until I was 67. I licked it, but without insurance it would have killed us financially.
Bill, your story scares the shit out of me and makes me very, very angry. And I've the feeling there are many, many more like you.

Jay–Ottawa said...

Bill, your account about the detailed workings of Big Insurance in your particular case sets my –– and apparently many others’ –– teeth on edge. You are not alone. Lord knows, posters at Sardonicky have been damning the system for years. I myself am a tad exhausted –– I blame old age and a sleepy thyroid for my impatience –– in decrying yet again the malign absurdities of US policy, whether in dealing with the ultimate catastrophe in the making –– climate change, our busy little wars that bring violent ends to thousands interminably, and the millions of individuals here at home who get caught in the for-profit health insurance system, which is both a maze and a lethal scam. Yes, lethal. Soft-handed administrators shuffling papers at their desks can be killers too.

“… the pattern by now has become a familiar horror story, if not a drill: a medical crisis leads to an income crisis which leads to a housing crisis…which can in turn create a further medical crisis.”

Once upon a time I worked full time in a regional burn unit. I remember one patient in his twenties, a 60% full-thickness burn victim. For several weeks we kept him intubated, unconscious, healing. The surgeons took him to the OR countless times for debriding and grafts, more debriding and more grafts. We tubbed and scraped him every day in between visits to the OR. Thankfully, his face was not touched by fire. After three months with us he would eventually walk out of the hospital and to a rehab facility for another three months. Eventually, he would go home and resume a more or less active life with all limbs flexing. He would, however, never serve again as a volunteer fireman.

His parents came by every day to sit by the bed. About a month into his stay in the burn unit, both parents both began to cry. I though it was over his suffering, but they told me it was over the bills they had begun to receive in the mail. Now it was time for the family to be burned.

I was doing a master’s degree on the side at the time. I became motivated to look into the money picture of health care. Lots of heavy duty journals and all that. An A paper for the filing cabinet. I came away solidly in favor of single payer and a cheerleader for Physicians for a National Health Program. Some of their leaders were on the News Hour from time to time. This was in the early 1990s. If logic ever ruled, it looked like the country was about to radically change the healthcare funding system.

Then along came Bill Clinton and Hillary. Their solution was to throw the whole business back into the laps of Big Insurance, whose profiteers were the major problem. For a variety of reasons the Clintons failed, the old patchwork prevailed and reform was put on hold for another twenty years.

As we know, Obama and compromised legislators dug up the buried Clinton Frankenstein and put the sparks to it under the name of the ACA. Essentially, the ACA took the old broken system and doubled down on it. Big Insurance now rules over the whole population, all of us forced to bow down in its direction. As Denis pointed out, a hefty percentage of US bankruptcies come about as a result of overwhelming medical bills. (I should spell out ACA for a dark laugh, right?: the Affordable Care Act.)

Obama, the prematurely retired president (h/t Annenigma) is now a lame duck. No more change coming from his direction. Next up as the decider, so they say, is Hillary.

Bill Neil said...

Jay and James F:

I had no sooner just finished reading your fine comments when the mailbox made a familiar sound and I got up and brought in the mail which included a bill from my "Cardiac Associates." Some of the charges are the older ones I already knew about, but what caught my interest was the physician charges for the two bouts of angioplasty and what looks like "parts"...The bill total was $9,000 or so...and what is fascinating is that all the surgery and related figures are different than the ones on the initial hospital bill for the same procedures...so add $9.0000 to the $16,000, hire lawyers, accountants (and doctors and nurses?) who can help me sort out duplicate and overlapping charges...I will be developing a whole new range of "expertise" to go with my obsolete land-use, takings and fifth amendment environmental skills...but the process pushes all this out of the realm of the merely human and into something else...a marketplace fantasy of shopping, sorting, comparing coding haggling...ah, the true meaning of life on earth...and sure to speed the ill on to their booming recovery. I know where Republicans and the Right will tell me I went wrong...but rather the question is...where did we go wrong?

Jay–Ottawa said...

@All

Also in the mail today, an article by Chris Hedges on the same topic.

http://www.truthdig.com/report/item/the_actor_and_the_minister_20140720

Denis Neville said...

The future is grim for many working women and men. Resources they once believed would carry them through retirement are disappearing.

There is a very scary number representing the gap between where retirement savings should be and how much Americans actually have. There is an almost seven trillion dollar gap between what people need to maintain their current standard of living and what they've actually saved for retirement.

The above assumes that people will work, save, and accumulate additional pension and Social Security benefits until they retire at age 65. It also assumes that retirees will spend down all their wealth in retirement, including home equity. The retirement income deficit is thus in many respects a conservative number. The measure also assumes no cuts in Social Security.

Social Security and Medicare are perhaps the only factors in the retirement income deficit calculation that the elderly can still rely upon. Without Social Security, almost half over 65 will be living in poverty. Dependence on Social Security has increased dramatically thanks to the great recession, collapsed housing market, decades of stagnating wages, and the disintegration of the social safety net. Social Security only replaces 37% of the average worker’s pre-retirement income at 65. Ninety five percent get less than $2,000 a month. Women receive less than $12,000 a year compared to $14,000 for retirees overall. Seventy five percent of the elderly living in poverty are women.

The biggest threat to Social Security isn't the Republicans. It’s Obama and the neo-liberal centrists and there obsession with austerity. Cutting Social Security is still on the table. It is something Obama has always wanted to do, adopting the chained-CPI for Social Security benefits, to reduce the deficit.

Karen’s comment, “If the debt crisis is such a crock, why are we still saddled with austerity?” was the top readers’ pick on today’s Krugman’s “An Imaginary Budget and Debt Crisis.”

Austerity makes absolutely no sense for the looming retirement crisis.

“The lifespan of any civilization can be measured by the respect and care that is given to its elderly citizens, and those societies which treat their elderly with contempt have the seeds of their own destruction within them.” - Arnold J. Toynbee

Bill Neil said...

Denis:

Thanks so much, that's really helpful. Having once parsed deceptively worded legislation for a living, I do have some of the right mindset here, but need to learn the new jargon. The number you just shared with us is frightening in the abstract and must have been worse in the envelope reality.

Zee said...

@Bill Neil--

Allow me to add my expression of sympathy to those that have already been extended to you by others in this forum. In many ways, your story could have been mine; your health situation—but for “The Grace of God” or “The Simple Luck of the Draw,” take your pick—could be mine.

In 1996, after 16 years with the organization from which I [eventually] was able to retire, I was threatened with being laid off. With a then-total of 26 years of experience in a highly specialized field for which there was little “market” at the time—or even now—had the layoff become a reality and I had lost my health-care insurance, as I say, your story could also have been mine had I fallen seriously ill. So I deeply empathize.

Denis has already recommended a number of medical consumer advocates who may be able to help you work through the maze of bills and negotiate your stated costs down. I know that these approaches can work, having been married to a health care professional for 40 years (As of yesterday!).

As I recollect, one of the periodic participants in this forum, The Black Swan—from whom I hope we will be hearing soon—also had significant emergency health care expenses in the past for which he had to apply for “charity assistance,” and I believe he was successful in both negotiating his hospital “costs” down and in obtaining charity financial help. He may be able to offer additional advice.

Bill, I will keep you in my thoughts and prayers.

Bill Neil said...

Zee:

Thanks very much Zee. I sent out this piece plus a link back to Karen's site to my Email readership of 600+ today... where my essays usually go...a collection of economists, journalists, elected officials, party officials, some overseas especially in England. I've had an interesting reaction so far, liking the idea of putting the problem front and center, in a journalistic way. But pretty much dead silence from those in power positions...I did have one offer of an apartment in Costa Rico for 500 a month...no mention of paying for moving expenses...maybe it was just bring one suitcase...

Bill

Bill Neil said...

In thinking about everyone's response and comments, and my own situation this morning, this thought jumped into my mind, probably subconsciously triggered by the old memories of the Cold War, Orwell and "Fahrenheit451" that I have just finished reading (from 1951-1953.)

Isn't what I am going through, and so many commentators have even been through it or too close to it happening for comfort, this fear, of falling into the terrible cycle triggered by illness, the downdraft of the American Dream, its flip side...but worse...fear of falling down the social order...oh sure,there's a safety net somewhere, but we all know its terms and provisions are so minimal, so impoverished and so degrading as to forever stamp its recipients with stigmas...it's designed to be that way, the Red letter, no? And isn't this dark feel of falling in the economic order like, very much like in its emotional tones, the dreaded knock on the door late at night by the KGB, dressed in leather and jackboots...to drag you off to the Gulag...in America, if you don't respond submissively or have succumbed to criminal impulses, you will go to a literal Gulag, our prison system...and the key will be forever thrown away on you...

Most of this fear is psychological and social, not the fear of being beaten by authorities, that is formal now part of the actual prison system, but rather broken psychologically by our hyper-competitive society where the underlying dynamic to "falling," to situations like my own present, is the great lurking question behind the Protestant Ethic, capitalism and the American "Dream": when things go wrong, who do you blame, the individual or the system? I worked this up in a long and difficult essay - "Sinners in the Hands of an Angry Market" with guidance from James Morone's "Hellfire Nation," but the essay straddles the fault lines of the cultural wars on all sides; too secular for religious folks,too religious for seculars...

But there you have it...the great fears lurking beneath everyday life, much closer to the surface now because of where we are in the curve of the past 30 years...one of my immigrant neighbors (and a nurse just recently) when they can step back from that all embracing American Dream so powerful and so straightjacket like for immigrants especially, shared her great fear in American that if and when she faltered or fell, there wouldn't be anyone there to catch her...you will fall and their will be no community in place to stop the descent...that is our "Darkness at Noon" and its never cast such deep shadows over our land...