Love In The Time Of Organ Transplants

Love In The Time Of Organ Transplants
Eric Frederick Trump

PREFACE: Most of us will deal with chronic illness at some point. We no longer live lives brought to swift ends by epidemics, infections, traumas of childbirth, and accidents. From the nagging of arthritis in aging limbs to the life compromises of chronic pulmonary disease or the transfigured personality of Alzheimer’s disease, chronic disease is the price we pay for living long. Few of us would choose to return to the mortality patterns of the past, but living with chronic disease raises new and once unimagined issues. Eric Trump, who had kidney disease in early life, was given his "life’s encore" by a transplant, but he now faces a life of financing splendidly effective yet pricey anti-rejection medications. They are out of his reach without health insurance—an issue, he writes, that brought a novel problem into his life. Phyllis Richman’s issue isn’t coverage but invention. She provides a vivid description of her life with Parkinson’s disease as she waits for the next generation of therapy—and the long-hoped-for cure. Richman voices the concern of millions of patients with chronic and potentially terminal diseases as she questions how to improve the funding and focus of research to rescue her and others.

DESPITE WHAT FRANK SINATRA sings, love and health insurance might go together more frequently than love and marriage. For the millions of Americans without consistent or comprehensive health coverage, love might not always be the first consideration when crossing the threshold into married life.

The question of health care was and is especially germane to me. I was born with one damaged kidney; a day after my twenty-ninth birthday, my aunt Inge gave me one of hers. As I soon learned, surgery was the easy part—paying for blood tests and anti-rejection medications for the rest of my life would be the real challenge. As a transplant recipient, I’m joined at one hip to the pharmaceutical industry, which manufactures the expensive immunosuppressive medications I need. At the other, I’m linked to a health insurance industry that allows me to pay for those medications, regular blood tests, and probably, since transplantation is a therapy, not a cure, another transplant one day. Shortly before surgery, my nephrologist told me straight up that those who can’t afford postoperative immunosuppression are offered the dream of an organ transplant but denied the reality. Since my transplant in 1998, I’ve struggled to find ways—some fair, some foul—to cover the cost of maintaining a transplanted organ. This struggle has also shaped the contours of my love life. The story of my transplanted kidney is also a love story.

Pre-Transplant Realizations

IT BEGAN IN 1997, A YEAR BEFORE MY KIDNEY TRANSPLANT, when I began hustling for the medicines that combated the symptoms of my failing organ and kept me free of a dialysis machine. I’d been working in Europe during most of my twenties, then returned to the United States to pursue a graduate degree at Columbia University. Although at the time I knew I had kidney disease and needed a transplant, my optimistic nephrologist concluded I’d do better to keep busy than languish in preoperative anxiety.

The only problem was finding adequate health coverage while I was waiting. At the time, the annual cap on prescription medications through Columbia’s health plan was $750; my medical needs exceeded that within months. I was too old to join my parents’ plan, and I didn’t have the required number of work credits under Social Security to qualify for Medicare. Also, I didn’t have private health insurance, and having end-stage kidney disease would have made obtaining it difficult or prohibitively expensive. A team of social workers at my hospital attempted to do so on my behalf and failed. President George W. Bush told us in 2007 that everyone has access to health care in America because "after all, you just go to an emergency room." Not in my case. I wasn’t able to enter an emergency room for a transplant, a free blood test, or a spare bottle of reassuringly expensive Epogen, a drug used to treat anemia associated with kidney failure.

At the same time, as I was entering the tangled bureaucracy through which Americans tread when searching for adequate coverage, I noticed a strange transformation in my love life accompanying the wild changes in my unraveling body: I was drawn not to American women, but to those who held citizenship in places with universal health care. While at Columbia, I spent a year in an international graduate student residence with some of the world’s best-insured women visiting me, and on occasion, like sirens, they would sing to me of their home countries.

I recall Sarah, a vodka drink in one hand, cigarette in the other, trying to reassure me in her posh, mellow English accent, "You can count on my kidney, dahling. We’ll patch you up in England." Kiku, filled with worry, warned that unless I moved to Japan with her, I would die "before her dying." Pragmatic Madja of Denmark, exasperated with my uninsured life, offered immediate marriage. Things got most serious with Erica from Canada, who urged me to cross the forty-ninth parallel with her to "civilization," where surgery and blood tests would be a right, not a privilege. It was like being a visitor to film director Michael Moore’s satirical Hook-a-Canuck.com, where happy Canadians seduce Americans with the prospect of reliable, no-questions-asked health coverage.

Even if Americans are insured, it doesn’t mean that they’ll always be adequately insured. Deductibles and copayments continue to rise as insurance pays less and less. Our system is a precarious one. A lost job can mean lost coverage and the way to maintain health that goes with it. For the uncommonly sympathetic women I met, the home country was also the back-up insurance plan. Their citizenship made health care a right. I was, and am still, touched by their generosity and concern—signs of compassion deeper than a passing frolic would allow.

Recycled Medications, Means Tests, And The Well-Insured
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Pre-Transplant Realizations
Recycled Medications, Means...
Love And Life After...
Living The Encore

TO SURVIVE THAT PRE-TRANSPLANT YEAR, I relied on resourceful doctors and nurses who passed along extra supplies and recycled medications donated by patients who no longer needed them. Today, according to the National Conference of State Legislatures, at least thirty-four states (including New York) have enacted laws that make it possible for their residents to collect unused medications from state institutions and nursing homes. This means that prescription drugs that otherwise would be destroyed are donated to those who need but can’t afford them. But in 1997, when I was awaiting a transplant, redistributing medications was illegal in New York State—and in most states—although the practice was, as far as I could tell, a common one. For months I injected Epogen into my leg from patients named Harold, Lillian, and Frank (among others), generous transplant colleagues in our own pharmacological exchange program stretching from coast to coast. Later, when I no longer needed Epogen and other pills and powders, I donated leftovers to the redistribution pool.

All the while my social worker urged me to "spend down" to qualify for welfare and Medicaid. Yet I couldn’t do it. I couldn’t tolerate shedding money and self-reliance to qualify for welfare. Ultimately, I passed the means test for Medicaid, New York’s state-run program: I proved that the bulk of my funds were student loans, so they weren’t really mine to begin with.

Behind my struggles with the U.S. system were the women from other lands I’d met who were able to just pack up and go home if they fell ill. When it came to my love life, I believed I’d made my own choices. It was just coincidence and fortuitous proximity, I concluded, that I fell for citizens of countries where health care for all was ensured. But was I a free agent? We Americans believe we’re pioneers of love, entrepreneurs who make our own way, whether it’s relying on serendipity at the water cooler or making eye contact walking down Main Street. Yet just as health concerns might impede the entrepreneurial spirit in business (how many of us cling to hated jobs so we and our families remain insured?), these same concerns can influence our love lives in ways we’d rather not acknowledge.

A New York subway advertisement a few years ago blithely urged the independently employed to "get married for love, not health insurance," reading for a growing number of passengers as a fairy-tale notion. Marriage is increasingly the road to decent health coverage. A recent poll conducted by the Kaiser Family Foundation showed that 7 percent of Americans say they or someone in their household married within the last year to obtain health care benefits. On 13 August 2008, the New York Times ran a feature story titled "Health Benefits Inspire Rush to Marry, or Divorce." It described couples (some of whom had just met) who ended up at the altar because one was ill and the other had great health insurance or in court because one needed to become eligible through divorce for subsidized coverage. In some cases, the question of how to make love stay is more than an emotional one. A breakup might also put someone’s health at risk.

Love And Life After A Transplant
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Pre-Transplant Realizations
Recycled Medications, Means...
Love And Life After...
Living The Encore

IT’S NOW TEN YEARS AFTER MY TRANSPLANT, and I recently married Josie from New Zealand, yet another country that guarantees its citizens health care. My "grand renal event" (as English Sarah called it)—a nephrectomy (kidney removal) and a transplant—occurred during the course of a few hours, but the transplanted organ has, in some way, been the secret sharer of my every romance since then. Whether Josie and I are palpating the slight rise in my pelvis beneath where Inge’s kidney lies like a wondrous houseguest, or thanking Inge on my "re-birthday," or discussing keeping the supply of medications steady, we recognize the kidney as a third partner, and that I’m an American "sicko" who relies on doctors, daily medications—and, if lucky, insurance—to stay healthy. Instead of fretting about a sick, failing kidney, I am now concerned with having a healthy kidney fail. Since my transplant, anyone close to me has been not just with me; they’ve been with me—and my kidney.

I waited a long time before asking Josie to marry me because of this attention-seeking organ. My sporadic health insurance meant that I wasn’t able to take the accurate measure of my emotions. Was this love, or was my patience with going in and out of health coverage finally at an end? This was a very real problem. During the past decade, I’ve done my best not to skip doses, although I’ve sometimes gone for months without a blood test, a cardinal no-no in the transplant world. I’ve relied again on recycled anti-rejection medications, surplus hospital supplies, and friends in Spain who purchased cheaper medications there and sent them to me. I’ve also crossed into Canada, which sets price controls, although there are now more efficient means of reimporting medications, such as through CanadaDrugs.com. Its branding slogan: "Providing hope to Americans through affordable health care." Importing hope from another country might be an audacious notion, but for some there is no other choice.

Employment isn’t always enough to secure viable health care, either. Even if you’re insured, you can still be underinsured— that is, insured, but not enough. A recent Commonwealth Fund study published in a Health Affairs Web Exclusive 10 June 2008 shows that the number of underinsured U.S. adults rose 60 percent from 2003 to 2007. An underinsured life isn’t much easier than an uninsured one. In 2001, for example, I worked as a journalist for a New York Times Web site, a job that provided no health insurance. To ensure the life of my kidney, however, I had to take another job an hour outside of Manhattan teaching literature and philosophy at a state college. I insisted on a full teaching load to qualify for full health benefits. So the New York Times job paid my bills, while the teaching position, although not lucrative, provided me with health insurance.

Finally, a widespread misconception has it that Medicare supplies kidney transplant recipients with anti-rejection medications for life. This isn’t true. Although Medicare has a provision for transplant procedures, it stops covering essential outpatient immunosuppressive therapy somewhere after thirty-six to forty-four months—unless the person is over sixty-five or disabled. The need for outpatient immunosuppressive therapy doesn’t end, however. This leaves many patients (the young, the working poor) on their own.

It’s worth remembering that the costs of maintaining a transplanted kidney are significantly less than the costs of its failing and the consequent dialysis. According to an article in the May 2000 issue of the Journal of the American Medical Association, dialysis for an individual costs an average of $42,000 a year, while maintaining a new kidney costs $26,400. The costs of retransplanting due to, for example, nonadherence to a drug regimen because of its high cost can be as much as $300,000. Moreover, last-ditch efforts to save an organ can be far more costly than the daily medicines needed to keep it viable. Reducing or not taking immunosuppressants is more likely among kidney recipients who don’t have insurance or who rely on Medicaid or patient-assistance programs. A study in the June 2007 issue of Transplant Proceedings concluded that for adult kidney transplant recipients the median rate of nonadherence is about 22 percent. The annual resulting kidney transplant failures from nonadherence cost the U.S. approximately $200 million.

Given that a kidney transplant is ultimately more cost-effective than dialysis, and that the quality of life with a solid organ transplant is vastly better and makes for fewer desperate citizens, shouldn’t Medicare consider covering the cost of immunosuppression medication for all who aren’t insured or who can’t pay?

Living The Encore
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Pre-Transplant Realizations
Recycled Medications, Means...
Love And Life After...
Living The Encore

I SAVED THE FIRST MONTH’S BILL FOR MY MEDICINE after my transplant ten years ago: $3,047.38. I knew then that my life’s encore would be expensive. The anti-rejection medications I ingest now cost more than $1,000 a month, yet my current insurance at New York University (where I work and study) has a prescription drug cap of $1,000 a year. I’ve applied to patient-assistance programs operated on the basis of income run by industry companies such as Roche and Astellas. These programs are excellent—provided you’re admitted. I was admitted to one program, but not to the other. This left my required medical cocktail incomplete. Taking the anti-rejection medicine Prograf without CellCept is like a mojito without the rum. Finally, while Medicaid came to my rescue once in 1998, it didn’t the second time I applied, in 2000. At that point I was making too much money—about $30,000 a year—as a freelance journalist and translator.

With Josie, I worried about the intertwining relationship between love, marriage, and her health insurance. Whenever I raised this issue during our courtship, Josie would shrug and remind me in her inimitable Kiwi accent: "We could always get married."

As it happens, Josie and I were in her country when I proposed. Freezing rain stung our faces as we trudged up a volcano called Mount Ngauruhoe. We were alone. The summit was swaddled in soiled cloud and mist. On the ascent, I heard the comfortably insured chorus of girlfriends past with their promises of a national health plan, and wondered how I’d ever know if I was marrying for love alone. Was I contemplating marrying Josie because my reasons derived from self-interest? Was it love, or the realization that in my lifetime the United States might not embrace a viable way to care for all its sick—despite what presidential candidates promise every election cycle?

Within the volcano’s caldera, I watched Josie marching ahead of me, her dark hair gemmed with raindrops. She was gorgeous. And smart. And adventurous. And maybe willing to take a chance on me. Yet here I was in New Zealand, schlepping this medical burden, increasingly common for Americans, over the volcanic scree and using it as the reason to perhaps avoid marrying her. Meanwhile, some of my compatriots back home were using their lack of health insurance as a reason to get married or, even worse, stay married in failing relationships.

When she reached the crater’s vermillion edge, beyond which a wall of chilling cloud pressed in like cotton batting, Josie turned. There was nowhere else to go. She smiled through her shivering, and as I approached her, I didn’t see an insurance policy, or a guarantee of happiness and health, looking back at me.

I don’t know if it was the rarefied air, or that we were alone, perched atop a cloud-capped rock, far from the shuffle and hustle of American health care bureaucracy, but the suspicions I had about my motives suddenly seemed tortuous and absurd. As these suspicions fell away, the landscape resolved into its basic elements. I saw the red earth, pools of silver rain, patches of snow—Josie riveting it all together. I knew as little about the reasons for what I was feeling and what was to come as I was able to determine what lay beyond the cloud mass ahead. Yet I knew I loved Josie, the woman in front of me, there and then, here and now, and that our love must be the basis of any future, insured or not. For that enigmatic and lucid moment, the shadows of the past yielded to a foreshadowing of the future. It was just the two of us, other voices from other times hushed, the imperatives of taming an illness stilled, and we took a step toward one another.

Editor's Notes

Eric Trump (eft208@nyu.edu) is a science writer working toward his Ph.D. in German language and literature at New York University, where he is also a research associate in the Trauma and Violence Interdisciplinary Studies Program. He has written for the New York Times, Washington Post, SEED magazine, and American Journal of Bioethics, among other publications. Some names in the essay have been changed.

http://content.healthaffairs.org/cgi/content/full/28/1/234