Doctor Tells A Personal Tale Of Racial Disparity In Organ Transplants : Shots – Health News : NPR

2017/06/26 Leave a comment

Yet another example of biases at work:

While she was a primary care doctor in Oakland, Calif., Dr. Vanessa Grubbsfell 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.

Can Health Care Be Cured Of Racial Bias?

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.

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The stem-cell struggle: Multiracial patients’ hunt for a match

2016/11/16 1 Comment

As someone who has undergone this gruelling treatment, and who did not have the same challenges in finding a donor (mine was from Germany), important to encourage minorities to consider being a donor to improve the chances of those who need this treatment:

Hundreds of Canadians are waiting for stem-cell transplants, but only half of them will find a donor, according to Canadian Blood Services. For multiracial patients, the chances of finding a match are infinitely smaller. As Vancouver filmmaker Jeff Chiba Stearns discovers in his new documentary Mixed Match, it is akin to finding a needle in a haystack or winning the lottery.

Stem cells, which are typically collected from blood or bone marrow, are cells that can develop into other types of blood cells, including the white blood cells that make up one’s immune system. For those with blood disorders and cancers, such as leukemia, a stem-cell transplant can be life-saving.

For Mixed Match, which is showing at the Toronto Reel Asian International Film Festival on Nov. 15, Chiba Stearns spent six years filming multiracial recipients, donors and families who’ve searched the world over for a match. The Globe spoke with Chiba Stearns about why patients’ chances of survival are linked to their lineage.

Why is it so hard for people of mixed race to find suitable donors?

A lot of people think of it as blood. You know, like, I have type O-negative blood. But this has to do with your genetic background, what you would call a “genetic twin.” Basically, when you’re trying to find your genetic twin, a lot of times, it’s someone who has similar ancestry, so someone who comes from the same place you came from because that would mean your immune systems would be very similar.

So, say, in Japan, which is a very homogeneous country, they have a very small pool of people in their registry, but you can still find a match most of the time. What happens when we start mixing is our genetics get a little more complex.

….Why do some people object to recruiting donors by specific ethnic groups?

When it comes to race and ethnicity, the idea of filling out the box and categories can be a little challenging to some people because maybe they don’t want to be labelled or put in boxes.

But at the same time, this is how we categorize people because we need to know, if I am part Japanese and part European, where do we need to start looking? Do we look in Japan’s registries? Do we look overseas?

And sometimes these categories may not be as accurate as people think because it’s self-identified race and identity. We don’t always know. Sometimes it opens up skeletons in the closet, like people may not have realized their great-grandma was Korean, for example, and nobody talked about that.

The idea of race in medicine is sometimes controversial because there have been drugs targeted specifically to African-Americans. Or when people say cystic fibrosis is mainly a “white people” disease, or certain types of diseases are more common in certain races, I think that’s when you get racial scholars coming up in arms because it’s dividing people by race.

It gets complicated, though. As you showed in your documentary, someone with Latino heritage might end up being a good match for someone who’s Asian.

This is why it’s tricky because we often say, if you’re Chinese, you need to find another Chinese donor. But there are rare cases, where, let’s say, an African-American person has donated to someone who’s Caucasian. It may not be a perfect match, and that’s probably what’s happening: These probably aren’t perfect matches.

That’s why I think we always encourage anybody and everyone to sign up. And because registries ask for self-identified race, sometimes you just don’t know whether there’s some kind of mixing in one’s heritage.

Source: The stem-cell struggle: Multiracial patients’ hunt for a match – The Globe and Mail

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