Health Affairs, 26, no. 1 (2007): 232-237 doi: 10.1377/hlthaff.26.1.232 © 2007 by Project HOPE	New Online   Obama's Success & Next Steps   3 Health Policy Options for President Obama   A Hybrid Proposal   Bipartisan Compromise

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Narrative Matters

Good For Harvest, Bad For Planting

My experience came through my partner, Robert, who is African American, as am I. Robert had end-stage renal disease as a result of focal segmental glomerulo-sclerosis, a kidney disease of unknown cause that was diagnosed when he was sixteen. His kidneys stopped working completely when he was twenty-six, at which time Robert began dialysis.

He had been on dialysis for nearly five years when we started dating. Admittedly, I was hesitant to get involved with him. Did I really want to take the chance to care about someone with such a life-altering and potentially life-limiting problem? But there was an undeniable attraction, and something in Robert’s way, easy and honest, that soon led me to Yes. It was a chance I was willing to take.

It wasn’t long before I started visiting Robert while he was on dialysis. Every Monday, Wednesday, and Friday from 6 to 10 a.m., the dialysis machine passed his blood through a filter, mimicking the work that his kidneys once did. I wasn’t bothered by seeing the blood-filled tubing connecting him to the machine, or even by the faint, sour smell of blood in the air. I’d cared for many dialysis patients. But what I’d never done before, I must admit, is ask what life on dialysis was like.

Realities Of Dialysis

 
THE WEEKENDS WERE HARDEST FOR ROBERT. Without functioning kidneys, he struggled with limiting his liquid intake in the face of constant thirst. The stretch from late Friday morning to Monday morning, his longest time between sessions, was the worst. Without fail, Monday mornings I would wake to the sounds of Robert vomiting, even though he shut the bathroom door, ran the exhaust fan, and turned on the shower to drown out his retching as he prepared to leave for dialysis. His body was ridding itself of the excess fluid the only way it could.

For much of the first couple of years of dialysis, Robert was able to work full time as a health policy analyst and maintain a workout schedule. "But when I passed out at work because I was too dehydrated," he told me, "and came to and looked up at the panic-stricken faces of my coworkers surrounding me, I had to accept my real physical limitations and cut back to part time." Within six months, however, his employer could no longer accept his physical limitations and suggested that he leave entirely. Impromptu business travel and long periods of uninterrupted office time were no longer feasible. Dialysis was saving Robert’s life but simultaneously stealing it away. It held the risk of infections, heart failure, and bone pain, as well as a much shorter life than a transplanted kidney could offer. Dialysis forced him to give up many activities. He no longer planned for the future; what future he would have was uncertain. Yet Robert rarely complained. "More than anything, I miss just having the urge to pee," he would sometimes say, then add, "It’s cool, though." His reasoning: Why complain when death was the only imminent alternative?

Moving Up The Waiting List

Top Realities Of Dialysis Moving Up The Waiting... What's Going On Here? Making It Happen NOTES

 
IT WAS EIGHT MONTHS INTO OUR RELATIONSHIP WHEN Robert was told that he had finally risen to the top of the waiting list for a kidney. He would be scheduled for a "reevaluation" to ensure that he remained an appropriate candidate for transplant. He and five other transplant candidates would meet together to be told about the process. I took the day off from work to be with him.

We both felt a sense of relief and excitement that his transplant day was finally near. Robert had heard that transplant centers assigned pagers as a way to alert patients when it was time; he hoped he would be given one. Secretly I fantasized that day they would keep him there for his transplant. I knew this wasn’t realistic, but he had already waited five years.

Why he still waited was unclear to me, because he had none of the patient characteristics usually cited as explanations for the racial disparity in kidney transplantation. He was young, and kidney failure was his only health problem. His blood carried few factors that would make it difficult to find a kidney match. He had no drug or alcohol abuse problems, but he did have a vast social support network that included me, his parents, and the "Friends of Robert"—a mini-foundation of more than a hundred people dedicated to helping him. He had both Medicare (for which all end-stage renal disease patients are eligible) and private insurance. He had a graduate-level education and was insightful and knowledgeable about his illness. He even took all of his prescribed medications every day—thus avoiding the "noncompliant" label that health care professionals can place on patients. And he was unwavering in his preference to have a kidney transplant; he called the transplant center monthly to ask if he would soon get a kidney, but really to remind the staff that he existed. An ideal candidate, one would think.

Some suggest that African Americans themselves are to blame for the racial disparity in kidney transplantation on the basis of the assumption that one’s genes are most likely to match someone of the same race, thus lessening the risk of kidney rejection. African Americans just don’t donate enough organs, it’s said. In fact, African Americans donate proportionately to their numbers in this country.¹ And in 2002, the United Network of Organ Sharing (UNOS) recommended that gene matching no longer be required for kidney transplant because today’s anti-rejection medications are so effective. So since race has presumably not mattered in organ matching for the past several years, one would think that Robert would have received a transplant just as quickly as the next appropriate candidate, black or white. But blacks, who are one in three of the candidates awaiting a kidney transplant, receive only one in five of donated kidneys. Whites, too, make up about a third of the kidney transplant waiting list—but receive every other donated kidney.²

Now, of course, no one told us that race was the reason why Robert hadn’t received a kidney, but the reevaluation day certainly implied that race mattered. The day began nicely enough. One poke with a small-bore needle to drain enough blood to fill six four-inch-long tubes. A seasoned veteran of venepunctures, Robert didn’t even blink. Then, along with the other hopeful potential recipients and their significant others, we listened attentively to the transplant nurse deliver an hour-long slide show about what we could expect for the rest of the day and throughout the kidney transplant process: meetings with each member of the transplant team that day, a kidney in four to six months, and a five-day hospitalization.

After the presentation, we chatted with another transplant candidate, a white woman in her sixties whose kidney failure was caused by high blood pressure. She still had some kidney function and required six hours of dialysis each week (Robert needed the full twelve-hour schedule). She had been on dialysis for two years. (Robert was on year five.) She was blood type O, like Robert.

What’s Going On Here?

Top Realities Of Dialysis Moving Up The Waiting... What's Going On Here? Making It Happen NOTES

 
SOON WE WERE LED TO AN EXAM ROOM WHERE WE WAITED for each member of the transplant team. The nephrologist came in first. He looked over Robert’s test results, then briefly examined him and asked if he had any questions. Robert asked how much gene matching factored into being assigned a kidney. Not at all, the nephrologist responded. "We only consider wait times. Nothing else."

Robert also asked him about the criteria for being included in clinical trials. He was aware that clinical trials tested the latest in anti-rejection medications but avoided steroids. Having endured five years of very high doses of steroid treatment to stave off total kidney failure—and its associated weight gain, mood swings, and face swelling—Robert felt that the known downsides of steroids outweighed the risk that the new medicines might not work. The nephrologist’s first and unhesitating response was, "African Americans are sometimes excluded from clinical trials because their immune systems are too potent and they reject [transplanted kidneys] more often."

Next Robert and I did our best to persuade the wary transplant team social worker and financial counselor that Robert would be able to maintain two forms of health insurance, afford the $215 monthly drug bill left after insurance, and have someone to drive him to and from the frequent doctor visits and lab trips after the transplant. Last, when the transplant team nurse met with us, Robert asked her how much longer he would likely wait for a kidney. The same nurse with twenty-plus years of experience who had told the group of transplant hopefuls earlier that the wait would be four to six months, half-glanced at Robert’s chart and responded, "For you it will probably be another year." Surprised and confused at this discrepancy, Robert asked, "Why another year for me?" Her answer: "We just don’t get that many O [blood type] organs."

One could dismiss the nurse’s comment, despite her decades of experience, as ignorance, given that O is the most common blood type in this country and, as such, the most common kidney type donated—even at that transplant center. One could dismiss the nephrologist’s comments about blacks’ "potent" immune systems rejecting transplants as those of an insensitive jerk, as I’ve often heard said about those who make blatantly racist comments. But to do so would be to dismiss the fact that these people were in positions where their decisions held power over Robert’s life and those of many others. If a transplant nephrologist could decide to exclude African Americans to improve study results, then it doesn’t seem much of a leap that he could choose a presumably less risky race to receive a limited resource.

Maybe the nephrologist’s comment was made on the basis of research. Even so, it wouldn’t have been the first time that I’d witnessed doctors making race-based clinical decisions by referring to a study that concluded that African Americans don’t "do well" on medication X. When I was in medical school, reputable medical literature taught us that "hypertensive blacks don’t respond well to beta-blockers" (a class of medications for high blood pressure), and we prescribed accordingly. Now we know that beta-blockers extend life for everyone with heart failure, whether caused by hypertension or something else.³

One might come up with a dozen other excuses for the nurse and the nephrologists—and even the entire kidney transplant system—but the contrasting images of Robert and the older white woman with whom we chatted earlier that day remain fixed in my mind. Despite the transplant nephrologist’s assertion that "only wait times and nothing else" determine a person being assigned a kidney, there she sat—at the top of the list with her two years of dialysis time—right beside Robert. Her doctor might have been a stellar advocate, but Robert’s wait for a kidney—more than twice that of the woman’s—mirrors the fact that the median wait time for cadaveric (deceased donor) kidneys is nearly twice as long for blacks as for whites (3.3 years versus 1.7 years).⁴ Furthermore, Robert’s long wait illustrates the inability of the current kidney transplant system to allocate organs systematically and fairly.

For those who want to believe that racial bias is a thing of the past, or at least that medicine is unaffected by the society that created it, I realize that it must be hard to accept that race could be responsible for Robert’s wait. But without that simple acknowledgment, I doubt that steps will ever be taken to remedy the shortcomings of the existing kidney transplant system.

Specifically, policy governing how transplant centers allocate organs and how patients get referred for transplant must be rectified. The current system lacks oversight. Nobody scrutinizes how and to whom transplant centers allocate—and don’t allocate—organs. Recent whistle-blowers’ accounts of a prominent transplant center’s egregious short-tracking of a "priority" candidate to the top of the list are a testament to that.⁵ Without sufficient over-sight, "worthiness" is decided with individual biases unchecked.

The subjectivity that governs who gets a transplant also weighs heavily into who even gets on the waiting list in the first place. The kidney transplant system’s lack of standardized and objective referral guidelines was evident in Robert’s case. An automatic referral on the basis of a standard level of kidney function would have placed Robert on the waiting list at least six months earlier. It was Robert, struggling to just understand and adjust to what was happening to his body, who asked his initial nephrologist about transplantation, rather than the doctor presenting all possible options—including a transplant.

By the end of the day, both Robert and I felt angry. I, a physician, felt vulnerable and powerless against a health system that had shown itself to be unjust. Acceptance was not an option. But just as I know better than to be rude to waiters out of concern about what "secret" ingredient might be added to my meal, I was reluctant to express frustration or outrage about Robert’s treatment for fear that my sentiments would be answered by retaliation against him.

Making It Happen

Top Realities Of Dialysis Moving Up The Waiting... What's Going On Here? Making It Happen NOTES

 
INSTEAD, I DECIDED TO TAKE OUR POWER BACK, and I pushed the kidney transplant system in the only way that I knew would help Robert. Healthy, and also blood type O, that day I came to a final decision on something that I’d been contemplating for several weeks. I would become Robert’s living donor. I knew the risk to me would be minimal but that the rewards for both of us would be tremendous. Robert’s first reaction was, "No, I don’t want to do that," feeling that he could never forgive himself if his body rejected my kidney. I pushed forward anyway. My reasoning was simple: When someone I love needs something of which I have two, of course I give one.

The day I learned that our typing was "compatible," I burst into tears. Hope lived. In the face of my unwavering resolve, Robert allowed himself to accept my gift. The surgery took place two months later, 14 April 2005. As the tubes and staples came out, Robert began making plans again. First on the list: the details of our beautiful outdoor wedding, which took place in August 2005.

Today, a year and a half later, Robert is free of dialysis and feels better than he has in years. Me, I smile every time I watch him gulp down as much of an ice-cold drink as he wants—I know that soon he’ll get the urge to pee.

Editor's Notes

 
Vanessa Grubbs (vgrubbs{at}medicine.ucsf.edu) is a clinical instructor at the University of California, San Francisco.

NOTES

Top Realities Of Dialysis Moving Up The Waiting... What's Going On Here? Making It Happen NOTES

 

1. U.S. Census Bureau, "Overview of Race and Hispanic Origin, 2000," March 2001, http://www.census.gov/prod/2001pubs/c2kbr01-1.pdf, Table 1, page 3 (accessed 30 November 2006); and United Network for Organ Sharing, "Deceased Donors Recovered in the U.S. by Donor Ethnicity," http://www.unos.org/data/about/viewDataReports.asp, click National Data. Step 1: Choose Category: Donor; Choose Organ: Kidney. Step 2: Choose a Report: Deceased Donors by Donor Ethnicity (accessed 1 December 2006).
2. UNOS, "Organ by Ethnicity: Current U.S. Waiting List," http://www.unos.org/data/about/viewDataReports.asp, click National Data. Step 1: Choose Category: Waiting list; under "Count," select Candidates. Step 2: Choose a Report: Organ by Ethnicity (accessed 1 December 2006). Editors’ note: The UNOS data site changes frequently, and the sequences above might not yield the report desired. As of 1 December 2006, these data were available on the UNOS site. Contact the site’s administrators for further assistance.
3. C.W. Yancy, S. Laskar, and E. Eichhorn, "The Use of Beta-Adrenergic Receptor Antagonists in the Treatment of African Americans with Heart Failure," Congestive Heart Failure 10, no. 1 (2004): 34–37.[CrossRef][Medline]
4. C.J. Young and R.S. Gaston, "Renal Transplantation in Black Americans," New England Journal of Medicine 343, no. 21 (2000): 1545–1552.[Free Full Text]
5. C. Ornstein, "Hospital Ends Liver Program," Los Angeles Times, 4 November 2005.

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