'Interlaced Fingers' Traces Roots Of Racial Disparity In Kidney Transplants

Jun 24, 2017
Originally published on June 26, 2017 12:51 pm

While she was a primary care doctor in Oakland, Calif., Dr. Vanessa Grubbs fell in love with a man who had been living with kidney disease since he was a teenager.

Their relationship brought Grubbs face to face with the dilemmas of kidney transplantation — and the racial biases she found to be embedded in the way donated kidneys are allocated. Robert Phillips, who eventually became her husband, had waited years for a transplant; Grubbs ended up donating one of her own kidneys to him. And along the way she found a new calling as a nephrologist — a kidney doctor.

Her candid new memoir, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match, explores her personal story and some troubling statistics. Roughly 1 in 3 of the candidates awaiting kidney transplants are African American, Grubbs learned, but they receive only about 1 in 5 of all donated kidneys. White people account for about a third of the candidates awaiting kidney transplants, but they receive every other donated kidney.

Grubbs writes of accompanying Phillips in 2004 to meet with members of the transplantation team — including a doctor, a nurse and a financial counselor — for a routine evaluation and update. After being on the waiting list for a kidney for five years, he had neared the top of the list.

"We sat in a clinic exam room listening to a series of people whose job it seemed was to talk Robert out of even wanting a transplant," Grubbs writes. Such meetings may be meant to make sure patients understand the difficult realities of organ transplantation, she says, but, "... the message we took away was, 'The kidney transplant system doesn't like black people.' "

Grubbs, now a nephrologist at the Zuckerberg San Francisco General Hospital, and assistant professor at the University of California, San Francisco, recently sat down to talk about her experience with NPR.


Interview Highlights

One of the things you write about in the book is that your colleagues did not appreciate that you published a piece in a health policy magazine — Health Affairs — [detailing the inequities in transplantation]. It was called "Good for Harvest, Bad for Planting." In fact, you got a lot of blowback that you were not expecting.

You know, I'm from a tiny little town in North Carolina, so maybe I was a bit naïve. Because I honestly thought that people would read this piece from a doctor being surprised at how the system was set up, and that they would take a look at it and be reflective and think about what they might be able to do to make the system at least seem more equitable to people on the outside. But clearly that was a naïve thought, because what ended up happening was that people who were very close to the issue became very angry, and they took it personally.

Why do you think that was?

Many doctors can acknowledge that there are race disparities in health care, that people of color do worse across many areas than white people. But I think most of us tend to think that somebody else is responsible for it. So for them, it meant that I was pointing the finger at them. And I think the unfortunate thing that we tend to do is, when we are associated with a bad thing, we spend our time trying to disassociate ourselves from that bad thing, rather than spending our energy in acknowledging that this is a bad thing and we should all work together to try to make it better.

And then, you go down the list of common assumptions, and you prove that they are not true. For example, you say it is an assumption that African Americans or blacks don't donate enough organs. That's not true. And you also say that even if that were true, anti-rejection drugs are now so effective that gene matching hasn't been recommended [for transplanted kidneys] since 2002. So what is the deal? Why is it that African Americans are, as you put it, "good for harvest but not for planting?" What conclusion did you come to?

In addition to being inspired to be Robert's donor, eventually I decided to become a nephrologist — really in an effort to do something for everyone else ... to try to do research into the area. And being in nephrology really opened my eyes to just how big the problem is throughout the system. The problems start way before a person gets to transplant. For example, people have to know that they have kidney disease. We know for a fact that most people aren't aware that they have kidney disease. From there, you have to be in the care of a nephrologist. You can't get to even the evaluation unless a nephrologist refers you, and you have health insurance that will pay for the evaluation.

Well — spoiler alert — you and your guy Robert are still together?

Yeah.

How's he doing?

He's doing really well. We celebrated our 12th transplant anniversary in April and we celebrate our 12th wedding anniversary in August.

Radio editors Jennifer Liberto and Ammad Omar, radio producer Denise Guerra, digital producer Nicole Cohen and science desk intern Courtney Columbus contributed to this story.

Copyright 2017 NPR. To see more, visit http://www.npr.org/.

MICHEL MARTIN, HOST:

Now for an improbable love story. Now, here you might be thinking, aren't the bookshelves groaning with those? But here's a love story that did not just change two people's lives. It shed light on inequalities that our next guest says are deeply embedded in a system that affects thousands of people every day.

The love story starts with Dr. Vanessa Grubbs. She was a family doctor, and she hadn't planned on falling in love with a man who'd been living with kidney disease since he was a teenager. But when she did, it set her life on a new course. Appalled by his years'-long wait time for a kidney donor, she decided to donate one of her kidneys to him. And then she began to study, document and fight against what she began to see as subtle but nonetheless very real racial biases in the decisions over who gets those precious transplant organs.

Oh, and the guy? She married him. And 11 years later, they are still going strong. She writes about all this in a candid new memoir, "Hundreds Of Interlaced Fingers." And I started our conversation by asking her how falling in love with a man living with kidney disease changed the way she thought about kidney disease.

VANESSA GRUBBS: When I saw patients with kidney failure, it was all about taking care of the numbers, getting the orders right. I really wasn't engaged in their lives. I was taking care of diseases and not necessarily patients with illnesses. Through him I could see that dialysis isn't easy. People have cramping. They can feel really tired after. Sometimes they get infections. Robert was only 26 when he started dialysis. And by then, he had, you know, kind of figured out his new normal.

MARTIN: Could you just talk a little bit about what it's like for him. Like when you met him, what was his life like? What was hard about it?

GRUBBS: Because he was such a young man, dialysis changed the way he saw life. No longer could he have the luxury of hoping about a future because it wasn't guaranteed on dialysis. We lose 20 percent of our dialysis patients every year. The dialysis procedure itself can really sap the energy, particularly if they're only having dialysis three times a week, which is what he was going through.

For him, he needed to take a break after dialysis. Otherwise, he would end up paying for it like feeling really lightheaded. Once he even passed out at work. So one of his biggest ways to deal with it was to go watch a movie or occasionally go get a mani-pedi. A lot of people wouldn't believe that to see him because he is a big linebacker kind of guy, but he very much enjoys getting his mani-pedis.

MARTIN: Knowing all this, I mean, knowing that, you know, it can be hard to travel, that it can be fatiguing, did you hesitate to get involved with him?

GRUBBS: I did hesitate about him being on dialysis. And what I was really concerned about was his dialysis access. And if you don't have your dialysis access, which is the way that we are able to connect the person to the machine, then they're in trouble because that's really their lifeline. And so I asked to see Robert's fistula - that's his dialysis access - on the second date. And for me to see how robust it was reassured me that it was OK to consider getting involved with him.

MARTIN: Yeah. That's not generally something that you'd ask on Tinder but maybe we should incorporate that? You know, will you show me your fistula?

GRUBBS: You know, I - yeah. You know, we joke that instead of him approaching women with what's your sign, it was what's your blood type? Maybe we can be compatible. It's medical nerd humor.

MARTIN: Medical nerd humor. Well, there you go. So you're dating. You're getting to know him, and you start going to dialysis with him. When did you start to think, why is he waiting so long for a donor when he is otherwise healthy except for his kidney disease? Certainly not an intravenous drug user, has insurance, basically none of the stereotypes people may have about kidney patients.

GRUBBS: Yeah. It was when I went with him to his transplant evaluation. He got a notice that he was nearing the top of the list. And this is something where they want to just check on a person, make sure they still want to transplant, make sure they're still healthy enough. And it was quite an eye-opening experience.

You know, as I said, I was a primary care doctor at the time, but I really had no idea about what happens in this kidney transplant world. And it was in that moment that I thought, oh, my goodness, this system is really biased. And it was in that moment that I said, you know, we should see if I can give you one of my kidneys.

MARTIN: Yeah. Here's where we can kind to get into the nitty gritty here. You know, you write, for example, that African-Americans are 1 in 3 of the candidates awaiting kidney donation but they receive only 1 in 5 of the donated kidneys. White people are also about a third of the candidates are waiting kidney donations but they receive every other donated kidney.

And then you say it is an assumption that African-Americans or blacks don't donate enough organs. That's not true. So what is the deal? Why is it that African-Americans are, as you put it, good for harvest but not for planting? What conclusion did you come to?

GRUBBS: In addition to being inspired to be Robert's donor, eventually I decided to become a nephrologist really in an effort to do something for everyone else. I mean, I gave Robert a kidney. For everyone else, it was to try to do research into the area. And being in nephrology really opened my eyes to just how big the problem is throughout the system.

The problems start way before a person gets to transplant. And all of these things have room for human error. So, for example, people have to know that they have kidney disease. We know for a fact that most people aren't aware that they have kidney disease. You can't get to even the evaluation unless a nephrologist refers you and you have health insurance that will pay for the evaluation.

MARTIN: You and your guy, Robert, are still together.

GRUBBS: Yeah.

MARTIN: How's he doing?

GRUBBS: He's doing really well. We celebrated our 12th transplant anniversary in April. And we celebrate our 12th wedding anniversary in August. And he never required dialysis after the hospitalization. He's leading a very full life, even has this dream job right now.

MARTIN: That was Dr. Vanessa Grubbs. She is a nephrologist at Zuckerberg San Francisco General Hospital. She was kind enough to join us from member station KQED. Her new book, "Hundreds Of Interlaced Fingers: A Kidney Doctor's Search For The Perfect Match," is out now. Dr. Grubbs, thank you so much for speaking with us. And our very best wishes to you and your guy.

GRUBBS: Thank you so much. Transcript provided by NPR, Copyright NPR.