One September morning two years ago, a courier delivered a box the
size of a small television set to the door of the house in suburban
New Jersey where I lived at the time. I brought it inside, slit the
seal, and began emptying the contents onto a sunlit table. First
out was a month’s supply of a smoke-green pill called Cytovene.
Then came CellCept of the blue-and-orange capsule, pink Procardia
and Xantax, puckish Prednisone, milky Mycostatin, Bactrim, and
lastly, carton after carton of shark-gray, beer-scented
Cyclosporine. Though I was familiar with them, the drugs’ names and
uses were still as strange to me as creatures from a remote galaxy.
I stacked the cartons, bottles, and vials to form a small citadel.
And in the half-lit room, with shadows and sunlight rippling over
it, my citadel became an emblematic tableau, a personal milestone
marking the divide between my former life and the one to
come.
‘For the rest of your natural life’ ran the words of my physician
and countless pharmacopoeias. For the rest of my natural life, I
would not leave this medicinal fortress. For the rest of my life, I
would be joined at the hip to the pharmaceutical industry, whose
discoveries were and are in large part responsible for this, my
life’s encore. For the rest of my life, I would be living with a
kidney that in cellular terms belonged to my aunt – a kidney that
was in me, but not of me.
Stunned with gratitude and helplessness, I looked once more into
the box. Within lay a stuffed penguin, the company’s mascot, on top
of a staggering itemized bill: $3,047.38 for a two-month supply of
medicine. For the rest of my life, I would have an expensive drug
habit if I wanted to keep my kidney.
Despite this nation’s unprecedented prosperity, 45 million
Americans have no health insurance, a number that has increased by
about one million a year since 1994, according to a recent Kaiser
Foundation report. While 85 percent of the uninsured work, or live
in a family where someone does, most are the medically indigent:
too poor to afford the high premiums of private insurance, yet too
‘wealthy’ to be eligible for Medicaid. And millions more Americans
– not just the elderly, whom presidential candidates like to woo –
lack adequate prescription drug coverage. As one of them, my
struggle to get the drugs I need every day reaches beyond the
problems of someone with an organ transplant. It illuminates the
troubles of all Americans, both healthy and ill.
Buying private insurance for a transplantee is either impossible or
prohibitively expensive. And Medicare covers only those who are
over 65 or disabled, and then for only 44 months after their
transplant. For more than a year now, I have been living without
insurance of any kind, depending for my drugs on physicians’
generosity, the beneficence of friends who live in countries where,
unlike here, prescription drug prices are controlled, and on a
charitable indigent pharmaceutical program, which provides me with
one — but only one – of the vital medications I need. I have spent
much time trying to understand how, without providing basic
sustenance to our citizens, we can brag about our wealth and power;
why we are still hearing echoes of the promising rhetoric of
September 19, 1945, when Harry S. Truman declared that ‘the time
has arrived’ to help the millions of Americans living without ‘a
full measure of opportunity to achieve and enjoy good health…[and
without] protection ‘against the economic effects of sickness’; why
politicians such as Bernie Sanders of Vermont and Brian Schweitzer
of Montana have to take busloads of seniors to Canada to purchase
the cheaper, mostly American-made, medications there; and why I, an
American, have flirted with the idea of packing my bags for good to
live in a land where the sick don’t suffer a punitive relationship
with their government. For the medications I need keep me alive.
They are the rent I pay to stay in my body. In theory, even one
missed dose can translate into a rejected kidney. The choices I
have had to make (go to the doctor or pay the rent) are so common
that they have become acceptable to a nation that prides itself on
justice for all.
The box I received that September day has since gone by other
names, but at the time I called it the ‘enchanted box.’ Others
dubbed it the ‘life support system,’ the ‘supply,’ or, in Germany,
where my priceless stash came in a bag, a nurse called it my
Wundertute, my ‘bag of wonders.’ To describe the contents of that
box as wondrous is not hyperbolic, at least not to someone who has
just had an organ transplant. In varying dosages and combinations,
the medicines I received that August day constitute the essential
postoperative therapy of the 21,692 Americans who receive organ
transplants every year. Over time, some drugs are lessened, others
discontinued, but the core cocktail of immunosuppressants — those
medicines that modulate the immune system so that it protects the
body from serious infection, while not rejecting the new organ as
foreign tissue — are the only way for transplant recipients to
live with the hearts, lungs, kidneys, pancreases, and now even
hands that they obtain from someone else.
That these drugs are essential to the survival of a graft is
indisputable (As my understated social worker at New York’s
Columbia-Presbyterian Medical Center says, ‘They’re not acne
cream.’) They’re as priceless as life. But they’re also expensive.
It costs, for instance, as much as $10,000 to $14,000 a year to buy
the drugs that protect a new kidney from the recipient’s immune
system. Before my surgery two years ago, I didn’t think about
insurance or the medicinal supply upon which my life would depend.
I was slowly dying and just wanted the kidney, regardless of what
would come after. But as I have learned, surgery is the easy part;
funding the organ’s drug habit is the challenge, especially if you
are without medical coverage. At various times I have called my
kidney, which I should love as my own, a dictator, a landlord, a
loan shark. Given that an inability to pay for immunosuppressive
therapy is a major cause of transplant rejection, I have been
finding different ways — some fair, some foul — to obtain my
medications.
This is why I call transplantation a miracle with a catch. My
nephrologist, Dr. David Cohen, in an article he co-authored for the
Journal of the American Medical Association, describes the current
practice of transplanting without ensuring drug coverage as
offering the dream while withholding the reality. Almost 50 years
ago, the roughly 71,000 Americans currently on the waiting list for
cadaveric organs would have had nothing to wait for. Recycling
organs was the stuff of myth, bringing to mind Mary Shelley’s Dr.
Frankenstein or Cosmas and Damian, the patron saints of medicine
who, the story goes, removed a devotee’s gangrenous leg and
replaced it with a Moor’s healthy one.
Today, with one person joining the list of transplantees every 14
minutes, this rebirth is, like birth itself, a routine miracle.
Indeed, transplantation is now so removed from gothic fantasy that
Hollywood gets mileage out of it. In 2002, New Line Cinema plans to
release John Q., in which Denzel Washington holds an emergency room
hostage because the hospital won’t help his uninsured son, who
needs a heart transplant. Far from being fantasy, the film is based
on two commonplaces in American society: transplantation and lack
of adequate medical care for all.
Three years ago, I wasn’t an activist. I was in Madrid, living the
sybaritic, unbearably light existence of an English teacher. Since
my students at J.P. Morgan Bank were defiantly proud of speaking
only Spanish, I had constant employment, teaching them sex
vocabulary and variations of the same grammatical lesson over and
over, which they duly forgot. I’d been doing this for three years,
as had my expatriate friends, and all of us lived in a drowsy
limbo, immune to time passing, our happiness mortgaged to a
hedonistic ideal. I think all of us were looking for a way out, an
escape from the ferment. My deus ex machina came from within me,
plucking me away from that existence swiftly and absolutely.
That said, I wasn’t prepared for the news I got from Dr. Edward
Cole when I returned to Toronto, where my family lived, for one of
my sporadic visits. I had intended to stay two weeks, but never
returned to Madrid to live again. Born with one damaged kidney, I
had always known I needed to worry about it. But I had convinced
myself, in the manner of the young, that I would make it through
life with my original parts. I vividly remember, as transplantees
do, the conversation that would split my life into before and
after.
‘We have always known your kidney might one day fail you,’ began
Dr. Cole, getting down to business.
We have?
‘According to your blood values, it’s working at 15 percent of
normal. At 10 percent, we start to consider dialysis. If you don’t
get proper treatment and your potassium went significantly higher,
you might face cardiac arrest.’ He leaned back in his chair, hands
clasped behind his head, with that 12-yard stare some physicians
get when they gaze at a brighter landscape their patients cannot
see. ‘I think it’s time we started thinking about a transplant for
you.’ ‘But what about Spain?’ ‘If you choose to go back and ignore
your medical problem – I can’t stop you – you could die.’
‘But my life – everything – is over there. What am I going to do
with my cat?’ I pleaded.
‘It’s your choice,’ he said. Rising from his chair, he added, ‘I
know you’ve got a lot on your plate. But we have people here to
help you thrash things out.’
With that, he gave me a curt pat on the shoulder and said he’d be
seeing me soon. I slipped from his office to the elevator to the
street. An ashen snow was falling. Spain was very far away.
Anyone who learns his kidneys are kaput – some 90,000 Americans a
year – develops a special relationship to the organ. Urine becomes
a magical fluid. Our brains become flypaper for urine trivia: We
note that Roman emperor Vespasian had it collected from urinals to
use as fertilizer, and that the Germans and the Swiss once
sprinkled it on cheese for flavoring. But apart from getting hopped
up about pee-pee, we also know a lot about the organs themselves.
They are our silent, six-ounce chemists, cleansing the blood supply
and maintaining cellular-fluid balance around the clock. From
within their maroon capsules they send out hormones that regulate
blood pressure, help with the production of red blood cells, and
absorb calcium from the intestines.
Without them, there is no balance of fluids, electrolytes, or
minerals. As kidney disease progresses, blood values become
‘deranged,’ and the organ’s crisis becomes a systemic one,
radiating outward, causing your legs to twitch uncontrollably at
night, your mood to pitch and list on shifting chemical
currents.
After receiving the news in Toronto, I wanted to crisscross the
continent to get second, third – hundreds of other opinions. An
unfortunately dire pamphlet a nurse had given me described a
transplantee as a potentially hirsute creature with a fat belly and
emaciated limbs who might tremble and suffer night sweats as he
slowly went bald. Therapies that I’d scoffed at – acupuncture,
herbal cures – didn’t seem so quackish anymore. Moreover, the
kidney would be transplanted not in its original place – out of
sight, behind the ribs – but next to the bladder, above the thigh,
creating a new and substantial lump up front, in my groin.
There were only two other options besides death, and both were too
depressing to consider for long. One was living with a tube sunk
through my peritoneum – the tough membrane covering the intestines
– that would be hooked up to a bag four times a day to flush the
toxins from my blood. The other was four-hour dialysis sessions
three times a week. And today, having experienced dialysis once
immediately before my transplant, I find it even more difficult to
imagine living for years that way, as many patients with kidney
failure must. For four hours, unable to read or sleep, I watched as
one tube drew my body’s blood away from me, pushed it through a
dialyzer that 0separated the good from the bad, and as another tube
brought it back to me, more purified than before. Across the room,
a shadowless reticulation of sluicing blood, a sleeping man groaned
awake now and then to deliver himself of fluid that had collected
in his lungs. An elderly woman in a neighboring bed blinked at me,
her mouth a rictus of mute exasperation. It was my birthday, and as
I munched on the stale cupcake the nurses had given me, I wondered
whether survival was worth this. After it was over, I returned home
and, as most of those to whom I have spoken about their first
dialysis session do, wept.
After six months of vacillation, I made a decision that seemed
insane to Dr. Cole, but made perfect sense to me: I would return to
New York, where I’d grown up, earn a degree from the school of
journalism at Columbia University, and deal with my failing kidney
along the way. I was defying, not denying, the disease. It all came
down to where I wanted to put the accent on my life: Was I the
vessel of a failing organ, or a man with a life to live? This
thought and the Canadian winter helped me to make my decision.
Anyone who has suffered through that interminable season will
understand the urge to flee south.
I was and am grateful to the Canadians, whose ‘socialized’
medicine, along with Great Britain’s, comes in for a routine
drubbing by the press in this country. Their respective systems
have problems, but they are fundamentally egalitarian and, at the
level of basic care, very efficient. Moreover, according to the
World health Organization’s most recent report, Canada’s overall
system – in terms of responsiveness to the sick, fair financial
contributions, and achieving good health – ranks seventh in the
world, with the U.S. at fifteenth out of 191 countries. In terms of
life expectancy, Canada is twelfth, America twenty-fourth. Though I
wasn’t even a Canadian citizen, I had a battery of nephrologists
and urologists working tirelessly to improve my health. There was
no humiliating means test to prove I was poor enough to deserve
medical care, no peering into my bankbook to learn whether I could
afford the next blood test. Before I left for New York a generous
friend named John Calvin (his real name) handed me an American
Express Gold Card as a gift, joking that I should return to
‘civilization’ if I couldn’t get coverage south of the border. But
no coverage was no joke. I would eventually use that card not to
return to Canada, but to purchase medicines and pay for blood tests
in America.
Studying at Columbia University provided a necessary distraction,
as I’d hoped. At the journalism school, students are permitted to
select a topic of their choice, research it to the hilt, and write
about it. That year there really was no other beat for me but the
kidney beat. Even when I was reporting on bilingual education in
Brooklyn or on Santeria in Queens, I was thinking about blood
values and what was happening to my body. I found myself in the
curious position of writing about a disease and treatment that I
was experiencing and anticipating. As I learned how kidney-born
erythropoietin helps produce red blood cells, I became anemic, pale
as a hungry vampire. As I read how kidneys produce active vitamin
D, my X-rays showed porcelain bones limned in shadow, my body
siphoning necessary calcium from them. And by the time I discovered
that uremia, a term that describes the accumulation of metabolic
waste in the blood, means ‘urine in blood,’ my saliva had a foul
taste, my fingers tingled, my appetite dwindled, and my heart
pounded as it compensated for its failing constituent.
One of the reasons I survived as long as I did without dialysis was
the arsenal of medications I used to combat my symptoms. Just
before my transplant, my kidney was working at three percent of its
full function, but I was ingesting and injecting drugs that kept me
afloat as they replaced hormones and displaced potentially
heart-stopping potassium while my kidney sank. And for the initial
five months I was at Columbia, I got my first taste of the
pharmaceutical hustle so many ill Americans need to learn to
survive under the current system.
First, my student insurance quickly collapsed. I exceeded the
laughable $750 annual cap on prescription drugs in a little over a
month. My other option was Medicaid, the national program for the
poor or disabled. Medicaid asks not, ‘Are you sick enough to
qualify?’, but ‘Are you poor enough?’ It does not have room for
those who can support themselves but cannot afford their medical
bills; those who are often told, as I was recently, to make
themselves poor by spending money–or, as elderly couples in
Kalamazoo, Michigan, and elsewhere have been instructed, to pay for
their funerals now to shed excess funds. The reasoning behind such
advice is counter to the work ethic many of us learned as children.
In essence, the government is telling us to become welfare
recipients for insurance. Leave welfare, and you lose your
coverage.
With no other alternative, I had my patrons write letters in which
they confirmed that they had loaned me the money I possessed. With
proof that the money I had wasn’t mine, I waited the better part of
a day at Harlem Hospital for an audience with a Medicaid clerk. She
looked at me, at my application, then at me again, and said, ‘I can
tell you now, you ain’t gonna get it.’ I asked her why, and she
said that there were thousands of others more needy than I.
It took over three months, but I did get it, and eventually
Medicaid saved my life. During those three months without coverage
I relied on the generosity of the medical community, whose doctors
still take seriously the Hippocratic oath’s injunction to do no
harm. One resourceful medical worker, whose motto was ‘We helps
those who needs it most’ provided me with free samples and recycled
drugs — that is, drugs donated by patients who no longer need
them, or by the relatives of patients who have died. Recycling is
as illegal as it is widespread, but it’s necessary when so many
can’t get what they need. I have given medicine I no longer use to
medical centers, and I have been helped in kind. In fact, a few
months before my transplant, I visited an acquaintance who had just
received her kidney. Though still groggy and in pain, she promised
me that the remainder of her Epogen supply, a drug that helps
create red blood cells, would be mine. She saved me thousands of
dollars.
I also had necessary medicines air lifted from Spain, where, as in
almost every other industrialized country but this one, the
government regulates prescription drug prices. My friends sent me
what I needed, incredulous every time I bemoaned our Kafkaesque
system.
Once Medicaid was in place, I began in earnest the hunt for a
kidney donor. A donated organ can become an unrepayable gift heavy
with obligation and gratitude. But a lifelong quid pro quo is
better than the alternative, namely, joining the waiting list for a
cadaveric organ. Those who are on the list must wait their turn for
someone to die in a hospital while on a ventilator. Though organs
are the scarcest medical resource, Western countries have wisely
outlawed their sale, preventing their becoming a commodity
available to the highest bidder only. The contradiction that organ
donation should transcend economics, while the medical coverage to
keep these same organs healthy should not, has apparently escaped
our legislators’ attention.
Finding a living donor involves a winnowing of the candidate pool
to find the one who is best suited not only physically, but
emotionally, to donate. The donor needs to be healthy and of the
same blood type, and ideally needs to be proven antigenically
compatible with the recipient after tissue typing. Simply put,
tissue typing involves matching six antigens on the cells of both
donor and recipient. If all antigens match, the graft will probably
last longer than if there is no match at all. My immediate family
members had themselves tested, but all except one had excess
protein in their urine, a sign of potential kidney trouble that
disqualified them. My brother, a strapping lad who jumps out of
airplanes and climbs big rocks, would have been a fine donor, with
pristine urine and three of his antigens matching mine, but since I
will likely need another kidney in the future (they don’t usually
last a lifetime), we put him on hold.
My donor came from the faraway, open spaces of Iowa. I hadn’t seen
my 53-year-old aunt, Inge Grosse, in 12 years. She knew about my
illness, but had only a vague idea of how far it had progressed.
What would I say? ‘I’d like to replace my kidney with one of yours.
Could you be on the next plane to New York?’ I still have the
unfinished letters I tried to pen asking her for a piece of her
body. They are replete with evasions and understatements: ‘I am a
rather sick man.’; ‘I understand if you don’t have the time, but
would really appreciate it’; ‘Don’t worry. Dialysis isn’t so
bad.’
Eventually, I just picked up the phone and called her. She sounded
the same as I’d remembered. I imagined her, a big-boned,
bespectacled woman in denim and sensible shoes.
‘Inge,’ I said. ‘Hi…’
‘Eric, hi! How are you?’
‘Fine, fine… Well, there’s this transplant you’ve probably heard
about..’
Whether it was our shared, albeit distant, past, or our genes, or
something else that transcended family, Inge picked up the slack of
my ellipsis with an orotund Midwestern laugh and said, ‘It’s yours
already,’ and flew to New York.
I spent the weeks before my surgery in the extreme reaches not only
of illness, but also of experience, or consciousness–I’m not sure
which. I was urinating blood, my bones ached, I slept fitfully. Yet
beneath my body’s unraveling was a euphoria I had never known. My
eyes were windows, and what I saw through them was transposed to a
higher key. I perceived rivers, trees – paper clips and doorknobs –
through a nearly mystical lens. New York flickered with an aching
beauty, intensely bright and significant, seemingly on the edge of
dissolution. My illness was killing me inchmeal, yet I throbbed
with energy, taking long bike rides through the tinted evening air,
or at night, pausing to gaze at a fat moon above Central Park’s
lesser lights, a chance wind might lift the curtain of the
quotidian to reveal something still beyond words. In retrospect, I
was in part celebrating and saying goodbye to my native kidney,
which would be removed; after all, what are we closer to than or
own bodies?
I have had Inge’s kidney since 1998, when a 10-hour operation
attached her renal artery and vein to my iliac artery and vein and
pierced her ureter through my bladder’s wall. After flushed of her
blood, the pale organ was placed in me, turning crimson with my
blood and producing urine almost immediately, in tune with the
tears my family shed in the waiting room. Four days after surgery,
I was discharged, a mass of tissue – still more Inge’s than mine –
slowly settling into my pelvis. Within two months, I was in Berlin
on a Fulbright Fellowship, at the end of which that kind nurse,
Schwester Astrid, handed me my Wundertute, a goody bag of
immunosuppressants that would last me six months. How I miss the
full, easy coverage of the German system, where there are no
pre-existing condition clauses or multiple categories of physical
and financial need. Upon my return to New York from Berlin, I once
again confronted our dilapidated patchwork of providers, a system
that spends more than any other country to underserve millions.
Though I was unemployed and sleeping on a friend’s couch in Harlem,
Medicaid denied me, saying that, to be eligible, I could have
assets of only $3,250 and earn no more than $600 a month. I
exceeded those limits and had no intention of spending down just to
qualify for welfare.
So I am back to my old ways, which I thought I would be able to
abandon after the transplant. I rely on samples and other
(presumably dead) patients’ supplies. My friends in Spain still
send me pills. I’m not alone, of course. ‘When I found out how much
the drugs cost, I wept,’ Debi Surlas, a 46-year-old transplantee
and registered nurse from Illinois, told me. ‘I told my husband to
forget it. I wasn’t going to have the transplant.’ With his
encouragement, she had a kidney and pancreas transplant seven years
ago. But with an HMO that doesn’t cover medications, she has spent
a whopping $60,000 of her own money on drugs.
Then there’s Luz Vazquez from New Jersey, who had her kidney
transplant seven years ago, at 33, and now lives from paycheck to
paycheck. When I called her recently, she had enough medication for
five days. If she didn’t get more, her kidney would become a time
bomb of potential rejection.
‘The system sucks,’ she said with a familiar resignation. ‘It’s
either the rent or my medicine.’ Medicaid covered her for a year
after her transplant, but then she began waitressing and was too
flush to qualify, and has been without insurance since.
I, too, have had to choose between financial and physical health.
In Germany, my blood tests were covered, and my one potential
kidney rejection was detected and treated before it became an
emergency. I should have blood tests every month to monitor my
kidney function. But since these tests cost about $400 each in New
York, almost as much as the rent I was paying, I did without when I
returned here, never knowing whether a headache was just that, or a
sign of something worse.
Luz Vazquez and millions of others rely on charities, such as the
First Presbyterian Health Clinic in Kalamazoo, which employs
volunteers toting garbage bags to procure drug samples from health
centers once a month. Last year, they hauled in $554,000 worth of
supplies for the uninsured. Jane Zwiers, who runs the program, says
her clinic gets about 17,000 visits a year. ‘The system is crazy,’
she says. ‘We need to scrap it and start over.’
Indeed. The cost of keeping an organ transplant alive costs on
average $26,400 a year, while dialysis runs a patient $42,000 a
year. And the cost of re-transplantation after organ failure can be
as high as $3000,000. Despite this, many renal transplantees – some
hospitals say as high as 55 percent of the patient pool – are left
to hustle for medication. And hustling often means cutting back on
or diluting one’s supply of medication and risking rejection, which
then costs taxpayers.
For over a year before my transplant, I lived with renal disease
and the possibility of dialysis or death. After my operation, I
thought I would at last no longer have to fret over a sick, failing
kidney. I don’t. Now, I worry about a healthy kidney failing. I
eventually did pay for a blood test and know I am all right, but
the worries about paying for the next one, and when my medications
will run out, are daily. The promise of transplantation will be
unfulfilled until transplantees have guaranteed access to
immunosuppressive therapy. And the promise of America’s medical
technology will be a mark of shame until all Americans – including
the 15 percent (and counting) now uninsured – have access to it.
Until then, we’ll continue to wait for the echo of Harry Truman’s
words 55 years ago – that adequate health care is a right of every
American regardless of economic status – finally to fade.
This article orginally appeared in the
December/ January 2001 issue of the now defunct George magazine.
