A System From Hell: My Personal Health Care Nightmare

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 prochoice 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.

By "comprehensive," I mean that piecemeal approaches will not work--not
economically, not morally. The healthcare crisis is not a series of
isolated problems. The problem is not just the uninsured. It is not only
the underinsured. It is not the young or the old. My husband had
excellent health coverage; our daughter had none. He faces chronic
illness in the twilight of life; she suffered a terrible injury just as
her adult life was beginning. Between them, they span the complete
spectrum of healthcare economics in America, but when crisis struck,
they found themselves in the same place.

Our story also illustrates the unique challenges women face in the
healthcare system, as in the economy at large. Women are paid less and
given benefits less frequently--yet they are the ones on whom the
responsibility of caretaking disproportionately falls. In addition,
women disproportionately, but hardly exclusively, understand the
perverse economic choices the healthcare system imposes. In my case, I
had to quit working to care for my husband, only to arrive at a point at
which he needs care I can afford only if I can find a job. The bills,
meanwhile, are often inexplicable, sometimes contain mistakes and are
always impossible to resolve without encountering a thicket of red tape.

Even on the other side of that thicket, the insurance companies cannot
answer the most vexing question my husband and I--and so many
others--ask: if "health insurance" does not pay for healthcare when
people need it, then what exactly do those words mean? And all this says
nothing about the fact that my husband had the foresight to purchase
long-term-care coverage. The problem is that it nominally covers
long-term care but does not cover its actual cost.

I am often told there is a shocking quality to our story--it prompts a
realization that if this could happen to someone like me, it could
happen to anyone. But of course there is little that ought to surprise
us; political connections are bound to be of little avail in the face of
a problem politics has refused to address.

If there is an upside to the country's healthcare crisis, it is that the
problem is hurtling toward a point at which it absolutely cannot be
ignored without immediate and disastrous consequences. If there is an
upside for me, it is this: returning to those difficult days of poverty
and fear in 1969 also means returning to a place where anger inspires
activism. I was a young woman then, of course, with a lifetime of
battles ahead. I am not so young now. But I have enough years left to
have one more fight in me. Healthcare is it.