A System from Hell: How Medical Crises Have Taken My Family to Financial Ruin
A version of this post was first published in this week's issue of The Nation.
It was a crisp and brilliant autumn day last October when the medical and financial crises with which my family had successfully, if barely, coped for seven years became a catastrophe.
My husband had been diagnosed with Parkinson's disease in 2002, a year after our daughter was paralyzed in a horse-riding accident. His balance had deteriorated until he fell two or three times at home last summer. In the face of his diminishing physical condition, a single fall could result in disastrous injury. We scheduled an appointment with his neurologist in Washington.
We pulled up to the main entrance of the hospital after the two-hour drive from our home near Gettysburg, Pennsylvania. My husband opened his door, grabbed the roof of the car and began to pull himself out as I walked around to help him. I was too late. In an instant -- time slowed enough for me to see the danger but raced ahead too fast for me to reach him -- he lost his grip and fell to the concrete, shattering his hip, breaking his femur and causing internal bleeding that kept him in the hospital for months.
My husband is a retired college professor, and what the teaching profession lacks in salary it often makes up for with generous benefits. His health insurance would cover most of the emergency costs related to the fall -- the surgeries, the hospitalization, the drugs. But in the astronomical sums the cost of medical care often entails, "most" is not a reassuring word. Months later, as his discharge from the hospital drew near, I sat in my living room looking at the bills piling up on the table. The co-pays, uncovered care and other costs had already reached $8,000, and we had virtually nothing left.
Seven years of caring for my husband and our daughter, who had no insurance at the time of her accident, had all but exhausted our savings. As my husband's condition deteriorated, I was caught in a trap. We needed my income, but the kind of political consulting work that was my forte was incompatible with the demands of caring for him. It was simply not possible for me to be available for him 24/7 and simultaneously to work overtime, traveling for days or weeks on the campaign trail, to bring in the income that would keep us afloat.
The fraying financial thread by which we were already hanging was now certain to snap. When I heard the awful sound of my husband's body hitting the concrete outside the hospital, I knew the modicum of independence to which he had clung for so long was gone. He was discharged into an assisted-living facility, where most of the cost was excluded from both his private long-term-care insurance and Medicare. At $9,000 a month, the bills accumulated quickly.
Recently, we decided to bring him home, although the doctors would have preferred that he stay at a facility with full-time supervision. But this was a mathematical decision, not a medical one: We do not have the money it costs to keep him there. I had already stopped working, to care for him; our savings are nearly depleted; and his pension is not nearly large enough to pay the bills.
Today he needs nearly round-the-clock professional help at home -- less than the cost of the assisted-living facility but still far more than we have. I have spent recent weeks looking for a job that can add at least enough to my husband's pension and our Social Security benefits to cover the cost of his care. It is a dilemma familiar to so many women -- finding work that can pay for care but also leave time for providing it.
The time is drawing near when, job or no job, the expenses will simply be more than we have. I am coming full circle, back to where so many women's lives begin and end -- and where my career as an activist began: jobless, unsure how to pay the next month's bills, caring for a family that depends on me for survival -- and utterly and deeply determined that something about our country must fundamentally change.
That was in 1969. My first husband had abruptly left my three young girls and me, stranding us without financial support. Our family was in crisis, and when I found out a few weeks later that I was pregnant too, I knew it was impossible to give a new baby -- whose father had already deserted it -- what it deserved while also giving my daughters what they needed. So in 1969 I made the difficult decision to have an abortion. Because state law radically restricted access to the procedure, that decision had humiliating consequences. I was forced to obtain permission both from the man who had abandoned my daughters and me and from an all-male hospital review board. The board's interrogation in a hospital conference room covered subjects like whether I was capable of dressing my children in the mornings and whether I had been satisfying my husband sexually.
That experience sparked a lifetime of activism that eventually took me to the front ranks of the pro-choice movement, where I forged deep and lasting friendships with some of the most powerful political figures of the past thirty years.
Not many Republicans were among them. But there ought to have been more -- because in a distant era fast receding in time, theirs was the party of moderation and individual rights, and also because, ironically enough, I have led precisely the life Republicans claim to value. I started as a single welfare mother, then worked my way through college en route to a successful career. My second husband and I have sustained a traditional and loving marriage for thirty-five years. He purchased quality health insurance, including long-term-care insurance, so he would not be a financial burden to others. He enjoyed a long and steady career at an institution that would pay healthcare costs and a modest pension for life. Between his salary and mine, we achieved a reasonable degree of economic comfort -- never wealthy but independent, self-sufficient, responsible.
Then came our daughter's accident.
We got the call in 2001. She was pursuing her lifelong love of horses as a trainer in upstate New York. One day in May her horse got spooked, reared up and fell over backward on top of her, crushing three of her vertebrae and paralyzing her for life.
The weeks and months that followed included multiple surgeries, a long hospitalization and extensive rehab. The bills were exorbitant, to say nothing of the fact that our daughter probably would never again be able to support herself through full-time work.
When the bills came in, it never occurred to me that walking away from them was an option. I cashed in the IRA on which we were depending for retirement and paid them myself.
My husband's diagnosis followed just as our daughter was beginning to stabilize. Eventually I had to leave work to care for him, and our financial independence deteriorated on a parallel track with his health. The story is familiar: the medical crisis that becomes a financial one. Still, we were able to hold things together, moving from one crisis to the next but finding a way to get by.
That ended in October. We quickly learned that not even the most frugal planning is enough to cope with surging healthcare costs. The long-term-care insurance barely covers a fraction of his long-term care. I will care for him at home, but a time will come when even our home might be at risk: If he needs nursing home care, Medicaid will pay for it only after we have liquidated most of our assets. Consequently, a blessing -- my husband could live like this for years to come -- is also likely to bankrupt us.
I do not tell this story because it is unique. On the contrary, the point is precisely that countless people across the country are living it. And millions more are a crisis away from joining them -- one lost job, a diagnosis, an accident. Most people do not have the luxury of being able to call, as I do, on powerful friends for help. Not even these friends, of course, can change the predicament my husband and I face. Nor will the situation change for anyone until political leaders get serious about comprehensive healthcare reform. (Read the rest of Kate's post here.)
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This story is a terrible "double whammy" for Ms. Michelman, but it would have been far more informative to learn what she and her family would have experienced in other countries, e.g. in Canada where competition against the government's health-care monopoly is forbidden, or in France where almost 9/10 of households have private insurance to supplement the fees that the state won't pay, or in Switzerland where there is mandatory private insurance and no government plan. I think realistic people would understand that this situation is unlikley to be resolved without a lot of pain and suffering in any health-care "system".
retired? people retire too early
and we dont get to retire or
play aroudn with horses
we do work and are covered
DUH!
Now try being a gay family in similar circumstances.
Our healthcare system is so broken but because of big business we will probably never get it fixed. I work in healthcare and I see the waste, the pure greed, I see and hear and right now going through being denied care, not cost effective, not Reagonomics. 15 months after dx. and I will be getting tx. and all I can do is pray that it is not too late, and oh yes I will be paying high co-pays. My heart goes out to you and your family. Dont give up.......
I'm putting here and now, a 100 dollar bet Obama will find a way to describe his health care reform as "politically not feasible" no later than say, October 2009.
That is how bad the politicians are in the tank for big money.
What a very sad story. It scares me witless. Who is going to take some initiative in this disaster and make some noise to change things. Nothing but crickets in the Senate and House.
Call it socialism or whatever you want, no other countries with national health care end up like this. And strangely, they seem happy and don't whine constantly about not being able to buy 3 houses. I know this is true, I lived in 3 other countries with healthcare and they are doing great.
Our medical care system is a broken mess like so many other messes created by greed. I have not had medical care since 1996 and will probably die without it. Oh well, there is nothing I can do about it because I do not fit any ones criteria. We in the US have potential to be what we should be but our govt. and business leadership don't have a clue. True value is human, animal and plant life not paper. Give this planet a break and start thinking "life" in every decision not money.
My uncle had terrible stomach pains for years and years. He kept it to himself. Had a series of manual labor jobs paying very little and could not afford to seek medical care. He waited until the pain was so bad he could not walk, to finally get to the hospital. There he was diagnosed with stomach cancer and died two weeks later. Age of 49. He waited until he knew he was at death's door and would never come out of the hospital alive because he did not have health insurance and had no way to pay for drs. visits, cancer treatments
We don't have any medical insurance at all and we can't ever afford it at all .
Everyday I pray we stay well and so far we have been able to but we are getting older and you know how things are as you get older things do happen.
I have been bleeding from my rectum for a while and sometimes really badly but I have no money at all to find out why so I decided to stop eating certain things and guess what it stopped.
Guess what I found out the very hard way that High Frutose Corn Syrup has a High amount of Mercury in it and I just bet a lot of people don't know that. Such things as Corn Flakes innocent things like that have High Frutose Corn Syrup in it Tomato Soup and so many more such as Ketchup, Salad dressing,
as we know Mercury can kill also some Mayonnaise has it as well.
There is something else people have to know about as well about Powered Baby Food the CDC anounced that there is a chemical used in Rocket Fuel known as perchlorate especially in Florida because of the Kennedy Space Center but it could be anywhere.
I just found this out last month but these are the kind of things that the government are hiding from us and keeping us ill.
I hope everyone who reads this passes it on so everyone will know.
Thank You!!!
For-profit insurers are a problem yes, but there's another one that no one here mentions: we are an overly litigious society. Want to know why everything at a hospital costs so much? Because THEY have to buy insurance against malpractice suits.
Medical mistakes that can kill or scar for life are tragic, but errors occur in every human system. We need meaningful reform of the system by which people dealing with grief and anger are encouraged to seek revenge (and riches).
Early in his career as a general practice doctor, my uncle delivered most of the babies in his area of rural Ohio. Around the time I was born though, he had to stop and hasn't done any deliveries since. He never made a mistake, a baby never died under his care, but the malpractice insurance became so expensive that he could no longer afford it.
Switching to a single-payer system is something that's long overdue in this country. But so is reining in costs by breaking the power of Big Pharma and introducing meaningful tort reform.
This is an old argument that has been minimized by the legal implementation of settlement caps in most states. I have no great love for lawyers but a majority of the settlements made now are based on valid cases of incompetence rather than greed.
The biggest cause of skyrocketing medical costs is Privatization and the duplication of administrative cost generated by so many subcontractors. Any one who has been in a hospital over the last five years knows about the pile of bills you receive once you get home. In addition to the hospital bill, bills are issued from contractors who do everything from washing bed sheets to providing toilet paper and bed pans. There's an administrative cost associated with each of these services and when you add these to the 18 to 20 % administrative cost charged by Insurance companies, it totals up to a hell of a lot of money.
So why are hospitals pressed to fragment these various services under one roof, you've got to look at who owns a majority of the private hospitals now, Insurance Companies. In earlier times, we would have been busting this sole ownership in one industry up under trust legislation, remember Microsoft's legal problems from a few years back. The Insurance industry started buying up all these hospitals in the 1980s when they thought their servants in Congress where going to mandate HMOs. The American people actually stood up and said no in significant numbers, where are all these people now
We will never get moving in the right direction as long as the main stream media continues to censor or outright block out any discussion of an alternative healthcare system. Last Fall, Ralph Nader correctly identified our current healthcare operation as a "Pay or Die" System. In a recent discussion held on an alternative news channel outside the main stream media, the roll of the insurance companies was properly defined as a "Toll Booth" rather than a healthcare facilitator.
As I have often posted on this site, nothing will ever change as long as the American voter continues to march to the polls and return the same people to Washington decade after decade. Why should they do anything for us when we are afraid to ask them for anything ?
You can trust nobody when it comes to our health so we have to do something on our own and that is a fact.
I just want to inform you that High Fructose Corn Syrup has high levels of Mercury and some powered baby food has a chemical called in it perchlorate used in rocket fuel.
You don't why we are ill? Do you?
I don't.
Why do you care? Llife is not important to you, it's a choice, remember?
Once people finally realize that Health Care is a business that keeps people sick(good customers) and only masks the symptoms not fix the problems, this issue will be a thing of the past. We are getting sick because we eat dead processed foods, polluted air, and the water aint that great either. Your bodies can heal themselves, but it needs you to give it the right things in order for this to happen over the long run. Faith in big pharma will not save you, you don't come off the meds, you just get more to take as time goes on. The love you get is equal to love you make. Abortion might be your right, but it is still murder. Convince yourself its not, but it was alive inside you, then the doctors killed it and took it out. Than you went on a crusade to make sure other women had the right to murder. But hey its your right, your choice, now live in the love you made.
I knew the abortion comment was coming...s
...btw, the use of the word "it" basically betrays your true feelings..
I'm sorry are you new to the saying "what goes around comes around" or "reap what you sow"?
"Convince yourself its not, but the baby was alive inside you, then the doctors killed the baby and took the dead baby out."
Your right, it sounds better that way, thanks.
What a malicious and disturbing reaction to this tragic story.
Tom Cruise, is that you?
Every time we ask you Right-to-Lifers who’s going to volunteer to pay to raise these unborn children, the room quickly clears. Hypocrisy in the religious community continues to survive and flourish !
Pro-death, well dont get mad at any murder then. That would be hypocritical.
Wishing that Right-to-lifers start preaching before the seed is planted aka birth control. I do beleive that no human being has the right to say to a woman, "you have to do this". This person has to deal withthis decision, and I am very sure for the average female this is a very hard deciion to make....on
A tumor is alive inside of you until it is cut out, too. That doesn't mean it is viable as a separate entity. Your judgementalism is just as disgusting to me as that comparison probably is to you.
By reading the comments many of us do not understand insurance. They have actualiral tables that tell them approximately how long we will live, the chances of us getting a disease or injured. They have boiled it down to a science. Yes, they want to make a profit. They have predetermined each person they insure their probable cost.
But they also meddle. Urging the use of a less expensive drug and so on. They also get sued alot so that is money that have to keep in reserve.
I am not sure what people mean when they say they want universal health care. Does that mean your state and the fed govt (or just the fed) will pick up the entire cost of our medical care. Sounds good. But we would really have to lock down our borders. If am wrong on the meaning of universal health care someone explain it tome.
Have you seen hordes of Americans migrate to Canada just because they have universal basic health care?
A registered nurse for nearly 30 years, a surgical assistant for nearly 12 years before that, I can assure you the American health care system makes me want to vomit. What a mess. A disaster, the worst "bang for the buck" in the world, misplaced priorities, FUBARed in a word. I sympathize, but you're going to need a lot more than that. A whole lot. The powers that be have the politicians in their pocket. When I hear these guys describe what they do as "public service" I want to laugh them out of town.
I totally agree. And, like you, I know the system from the inside.
Red tape and lawyers cause alot of this mess. I do not know a way for you to handle things but I hope you find way. Hopefully with help from neighbor, family, and friends. Praying will not hurt.
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