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For Minorities, Organ Waiting List a Dangerous Place

ED GORDON, host:

And now, more on the shortage of organ donations in communities of color. Dr. Lynt Johnson is chief of the Division of Transplant Surgery, and vice chair of the Department of Surgery at Georgetown University Medical Center in Washington, D.C. I asked Dr. Johnson for reasons behind the crisis and what can be done.

Dr. LYNT JOHNSON (Chief, Division of Transplant Surgery, Vice Chair, Department of Surgery, Georgetown University Medical Center): For many African-Americans, in particular, they don't really appreciate the number of people, patients awaiting organ transplantation. Particularly, they don't realize the number of African-Americans waiting on the list.

Many of these patients are anonymous to them. However, I think that it is so prevalent that someone in your family or someone that you know, knows someone who is certainly on dialysis and has end stage renal disease. And that's the message that we're trying to get out to educate people, to let them know that it's our brothers, sisters, friends, who are actually on these lists waiting for organ transplantation.

GORDON: You talk about numbers. It's upwards to 93,000 people on waiting lists, and of that number 25,000 plus are African-American. And when you talk about trying to find a match, if you will, it is easier to find a match race-to-race, is it not?

Dr. JOHNSON: Sure. Although our medications have gotten a lot better over the last 10 years in terms of what we need in order to provide a successful transplant. The success of that transplant is certainly made greater if there's a genetically closer match.

And there are certain genes within our gene pool that are more closely matched with African-American donors than the majority population. And therefore it makes a lot of sense, that if we are able to increase the donor pool with more African-Americans, that's going to result in not only more transplants but more successful transplants as well.

GORDON: In spite of major religions in this country encouraging donation, we do see many African-Americans, particularly those of a certain generation in certain regions of the country, who feel that philosophically, religiously, it is not right to donate. That they want to go out as they came in, so to speak.

Dr. JOHNSON: Well, all major religions support organ donation, and that is a belief and a myth that - at least in my opinion - I think that - at least in my belief - that body parts that we have on this earth are not going to be necessary the next life that we have.

And in essence, many of those body parts are actually removed at the time of burial, in any event. And so I don't think that's it's a valid point, in terms of trying to maintain all of our body parts as we go into the next life.

GORDON: What of the idea of people just being afraid, quite frankly, of donation. It is an operation, nonetheless. Something that if you're not looking to, obviously, provide for a loved one, your child or spouse - it does take you into the area of just having an operation, which many people are deathly afraid of.

Dr. JOHNSON: Sure. Yeah. That operation, however, occurs after we die, so that it is done like any other operation, with anesthesia and so forth. I think that there is a lot of fear. On the other side of it, if we happen to need an organ one day, I think that we are going to be hoping that somebody makes the right decision and decides to donate life to us.

And so I think there's two sides to the equation. And I think, as we talk about this more, we're going to find out that there are more people that look like us, and talk like us, and live like us that need these organs. And I think that, perhaps, will open our perspectives a little bit.

GORDON: Isn't that irony of it all? I mean the idea that we are afraid of something that will happen after the fact, but we're still nonetheless terribly afraid of it.

Dr. JOHNSON: That's absolutely right. You know, in some parts of the country, for instance, in Washington, D.C., over 60 percent of all patients waiting on kidney transplants are African-American. You know, it is this great need and those great numbers that we need to make people aware of.

GORDON: What about education, preventative education, if you will? Often we see the need for many of these organs because of abuse of one's body, because of ill behavior by means of good health, et cetera.

Dr. JOHNSON: You know, I think that they go hand-in-hand. I don't think that we can talk about donation without, at the same time, trying to talk about prevention. If we reduce the need for transplants, then we need fewer donors. Having said that, however, there are certain diseases and conditions that we, for instance, are genetically predisposed to, such as hypertension.

There are other diseases, like diabetes, that has some genetic predisposition, but on the other side also has a self-imposed risk factor to it, particularly with obesity. And I think that we need to talk about these things and how to prevent them, how to diagnose them early, and to manage them once we get them.

GORDON: Doctor, let me ask you, for those who are motivated by our talk here, is there a clearinghouse - is there somewhere to go to say, and put yourself on a list to say, I would like to donate my organs. Because as we note, time is of the essence when you're trying to retrieve an organ and send it out.

Dr. JOHNSON: Right. Every state is a little bit different. Certainly the Department of Motor Vehicles is one area where someone can signify on their driver's license. There is a clearinghouse nationally called Donate Life America, and their website is www.donatelife.net. That is a very good resource that can point you to wherever you live across the country.

But most importantly is to talk about it amongst your family. Those are the individuals that will be approached once you die in terms of the decision whether you donate or not. And if they know your wishes, they're more likely to act accordingly.

GORDON: Dr. Lynt Johnson is chief of the Division of Transplant Surgery and vice chair of the Department of Surgery at Georgetown University Medical Center in Washington, D.C.

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Coming up, could this be the end of a historic run in Cuba? And the SCLC wants to take its message of nonviolence global. We'll discuss these topics and more on our roundtable.

This is NPR News.

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