African Americans Struggle for Kidney Transplants

African Americans suffer from kidney disease at higher rates than other races, but the availability of organs that "match," making them useful for transplants, is often scarce. One man's journey through the system illustrates the problem.

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ED GORDON, host:

From NPR News, this is NEWS & NOTES. I'm Ed Gordon.

All over the country, health-care advocates are urging people to give not money but organs. African Americans and Latinos have traditionally balked at donating organs and tissues, but proportionately, more minorities suffer from diseases that transplants could help. Today, on National Minority Organ Donor Awareness Day, we'll talk with a surgeon working to overcome cultural barriers to organ donation.

But first, a story of one black man's journey through the transplant system. From member station KALW in San Francisco and New California Media, Holly Kernan reports.

HOLLY KERNAN reporting:

For the last five years, three full mornings a week, 32-year-old Robert Phillips has been coming to this Oakland hospital. He knows exactly how many times he's been stuck by a needle.

Mr. ROBERT PHILLIPS (Kidney Patient): Sixteen hundred eighty-two, so almost 1,700, to be exact.

KERNAN: Phillips lies in a reclining chair. He's connected to a dialysis machine that filters his blood, a job his kidneys stopped doing when he was 26 years old.

Mr. PHILLIPS: It was probably then that I stopped planning for stuff, and then I also had to reconcile the fact that, you know, everything that came with it would just have to be fine for the moment, because, you know, the alternative was a lot more unpleasant.

KERNAN: The dialysis that keeps Phillips alive makes him feel weak and sick much of the time. He used to hold down a job as a health policy analyst, but dialysis takes 12 to 16 hours a week, so last year he quit working. Since he is young, he wanted to get a kidney transplant in the hope that he might lead a normal life again.

Mr. PHILLIPS: You know, I'd always known about transplantation and assumed that I would be a candidate for it. But I didn't know what that meant, really, you know? And initially when I got on dialysis, it wasn't a conversation that my doctor had with me.

KERNAN: Phillips says he had to convince his doctors to refer him for transplant. Then he had to challenge other assumptions.

Mr. PHILLIPS: When I went for my evaluation at the transplant center, instead of, you know, reading my medical records and, you know, finding out the cause of my renal failure, they put diabetes down. So I had to take it upon myself to prove that it wasn't, right? I had to show them that I wasn't. Well, you know, that's a racial assumption.

KERNAN: African Americans have a much higher rate of renal disease than other Americans, but in the end, they are less likely to receive transplanted kidneys than whites.

Dr. WILLIAM BRY (California Pacific Medical Center): I don't think you'd find a transplant professional who felt that the status quo is acceptable.

KERNAN: Dr. William Bry is surgical director at California Pacific Medical Center's kidney transplant unit. He performs over 100 transplants a year.

Dr. BRY: You can't point at any one or at any five factors that go into explaining why blacks receive fewer transplants than whites. Race is a factor in every facet of this process.

KERNAN: About a year ago, after Robert Phillips had already been on dialysis for four years, his doctor told him that he was finally near the top of the waiting list for a kidney transplant. But he still needed to prove to social workers, financial advisers and more doctors that he would be a successful candidate. His fiancee, Vanessa Grubbs, is a doctor. She remembers the process.

Dr. VANESSA GRUBBS (Robert Phillips' Fiancee): I think I approached it with a lot of hope, and then to sit there and hear people one after one after one seem to just be there to basically dissuade you, it's like they were kind of weeding out people, because, you know, I understand that organs are scarce. But it just felt so unfair.

KERNAN: Grubbs refused to settle for the idea that her fiancee might wait another year for the transplant.

Dr. GRUBBS: I said, you know, `This is bull (censored), you know, this whole situation.' I said, you know, `We should think about me giving you a kidney.'

Mr. PHILLIPS: I felt like it wasn't necessary for her to make that type of sacrifice for me, but I'm happy that she's decided that, you know, she's willing to do it, though.

Dr. ANITA CARSTENSEN (Nephrologist): Yeah, hi.

Dr. GRUBBS: Good to see you again.

Dr. CARSTENSEN: Congratulations.

Dr. GRUBBS: Thank you. We're very excited.

Dr. CARSTENSEN: That's wonderful.

Dr. GRUBBS: Two more runs after this, right?

KERNAN: It's six days before Phillips' and Grubbs' transplant operation, and they're checking in with their nephrologist, Dr. Anita Carstensen.

Dr. CARSTENSEN: Nervous?

Dr. GRUBBS: Nervous, excited.

Dr. CARSTENSEN: Yeah.

Mr. PHILLIPS: I'm ready.

Dr. GRUBBS: Yeah, I know...

KERNAN: In less than a week, doctors will use laparoscopic surgery to snip Grubb's kidney and slide it out through a small incision in her abdomen. Then surgeons will attach that kidney to Phillips' bladder. One healthy kidney can do the work of two. Phillips and Grubbs had the transplant on a Thursday. Phillips says the operation went well.

Mr. PHILLIPS: I looked over, I saw Vanessa, and then they told me the kidneys were working, that the surgery was a success.

KERNAN: But within a day, doctors noticed something was wrong. Grubbs was recovering fine, but Phillips wasn't passing fluid, a sign he might be rejecting the transplanted kidney. A week after the first operation, Grubbs came to visit Phillips and found an empty room. He had been taken back to surgery.

Dr. GRUBBS: Yesterday, Robert developed a lot of pain. They took him back to the operating room today to try to get at what the real problem is and fix it. So I'm just trying to, you know, keep the faith that everything will be fine.

KERNAN: A day later, Phillips is back in his hospital room. He's tired. He's had three surgeries on one week. Phillips says losing his life wasn't what worried him most. It was the fear of wasting his fiancee's kidney.

Mr. PHILLIPS: The one thing in all this that frightens me the most is losing the organ by some fault of my own, and I thought that, you know, that's what had happened. But, you know, that wasn't the case.

Dr. GRUBBS: You guys want to play outside again with the balls?

Unidentified Child: OK.

Dr. GRUBBS: Good.

KERNAN: Weeks later, Phillips is convalescing at his parents' house. Grubbs and her son, Avery, are visiting and they're planning their wedding.

Unidentified Child: (Singing)

KERNAN: African-Americans are four times more likely to suffer from kidney disease than whites. But only about one out of six black patients gets a kidney transplant. Half of all white patients receive the new kidneys they need. Robert Phillips may have an opportunity to help change that. He's been accepted to the Harvard School of Public Health. Next month, Robert Phillips will begin his new life as a grad student, with the goal of changing the way physicians and policy-makers consider race and class in medicine.

For NPR News, I'm Holly Kernan.

GORDON: In case you're wondering about that wedding, Robert and Vanessa plan to tie the knot this Saturday.

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