Elaine Berg, Former President & CEO

NY Organ Donor Network

Full Interview
[17 minutes  50 seconds]

TRANSCRIPTION OF VIDEO

Elaine Berg:   
Right now, there are almost 86,000 people in the United States waiting on a list for an organ transplant. About half of those are waiting for kidneys. The next largest number of people are waiting for livers and then hearts and so on. New York State has about 10% of the national waiting list. So we have between 8,500 and 9,000 people in New York on transplant center waiting lists right now.

(Pointing to screen) The yellow line basically shows, for the last ten years, the number of people on the waiting list. Ten (10) years ago, 1994, (right down here) 37,000 people were on the list. And 10 years later we’re now up to 85,000. So the waiting list grows exponentially. The problem we have is this blue line down here which is fairly flat. The number of deceased organ donors in the country have gone from 5,000 in 1994 to only 6,500 in 2004. So that number is clearly not rising as quickly as the number of people on the waiting list.

Interviewer:
What’s the green number?

Elaine Berg:
The green number is actually also an interesting number, it’s the number of transplants nationally which went from 19,000 to 25,000 . One of the reasons that number has risen pretty dramatically has to do with living donors. And in 2003, the number of living donors actually exceeded the number of deceased donors in the United States. That doesn’t mean… you know, we can transplant up to 8 organs from a deceased donor and obviously only 1 from a living donor.

The politics of waiting lists are very interesting. Unfortunately I think that that’s one of the few inequities in how the system can work. If you are very well-educated and very sophisticated, you can look on the internet, for example, and find out which regions in the country have shorter waiting lists for an organ, and you can go to that state and register… go on a transplant waiting list and register there. You can also at this moment in time register in 2 separate regions in the country. You can’t register in 2 transplant centers in the same region. But you could for example, if you lived in New York, register at a transplant center in New York and then if you found out that there was a shorter waiting list in a different state, you could also go there and register. So there is that possibility which of course is only available for people who A) can afford to do this, and B) are sophisticated enough to find out how to do this.

Interviewer:
Why does it cost money to do that?

Elaine Berg:
Well, in order to be on a transplant center’s waiting list you actually have to go there periodically and continue to be examined and be under the care of a doctor. So if you were registered on two waiting lists and 2 transplant centers, you would essentially be under the care of 2 doctors.

Interviewer:
And would that person tell the doctor that they’re registered somewhere else?

Elaine Berg:
They might. Again, it is legal. It is an acceptable thing to do it at this point. Although the national program, UNOS, that oversees allocation and waiting lists and so on is looking upon this carefully from a policy standpoint to see whether or not they want to change that and make it illegal to register in more than one region. It’s not always absolutely clear that when there’s a shorter waiting list that an organ will become available more quickly. And I think one of the things that people don’t understand is that for every organ there’s not really a waiting list for every organ ….you know, if I’m number 3 today that I will get the third organ that comes up next. Because the lists are very dynamic and they change according to how sick people are and although you could be #3 on the list today, 5 much more sick patients can be listed tomorrow and then you will drop down. And of course there are other matching criteria such as blood type, and organ size, and so on. So it’s not a linear list, so to speak; it’s a very complex list. I’ve heard people go to Florida for kidneys. I’ve heard people go to Wisconsin for pancreas. You know, it really depends on the specific time, and how long the list is, and how many donors there are in that region.

People are horribly desperate to get organs. I have seen things I wish I didn’t see. I have seen families do very extreme things. We all know that there are situations where people will try to pay for organs, and try to get living donors to donate organs for them for money. To me, this is an act of extreme desperation. We’ve seen cases where families have gone public, publicly begging people to give organs / donate organs to their loved ones. So it must be, personally, a feeling of extreme frustration that you know that the cure is there. And yet, because not enough people donate it’s not available to you. And I think actually that’s the essence of what we’re all trying to do: Educate the public to understand that this is something that can happen to any of us. And in order to be a good, moral, giving person, we ought to all be signing up as donors after we die.

There are around 17 people that die every day. And again I think that the horrible shame of that is that they can be saved. The technology is there. The information is there. The ability to save their lives is there. But the limiting factor is that people won’t donate their organs. Nationally, there’s about a 52% consent rate. In areas like New York, large urban areas, it’s considerably less. This year we have about a 46% consent rate, which is actually an increase over previous years. One of the reasons for that is that we are, in New York, multi-cultural, multi-ethnic, multi-religious. We’ve got all kinds of people with all kinds of backgrounds in New York, many of which don’t lend themselves to donation: such as certain Orthodox communities absolutely are against it. There are other new immigrants, for example, that don’t know anything about it and have just never been exposed to either transplant or donation. So that’s a very difficult group to talk to when there’s a potential donor. So we have a little of everything in New York, and I think that presents a very unique challenge to us.

There are situations where foreigners, including Israelis, can come to New York and sign up on the transplant waiting list. The national rule (and it’s actually a law) is that no transplant center can transplant more than 5% of their list to foreigners or non-citizens. So it is conceivable that an Israeli can come to New York and if the specific transplant center doesn’t have a lot of non-citizens on their list they could get listed and get a transplant.

You know, with the shortage so severe the feeling of Americans is we ought to go first, and why are these other people coming in and availing themselves of this precious national resource. However on the other side of it there are also many non-citizens and foreigners who end up being donors and the last numbers I saw was that there are more non-citizen donors than non-citizen recipients of organs. So there’s some equity there.

We do get very Orthodox families that send a message out “don’t talk to us, we don’t even want to discuss it”. And in those cases, we don’t.

Interviewer:
And those families that don’t want to donate, they’re willing to take organs?.

Elaine Berg:
Oh well, again, I don’t have the information on how many very Orthodox people are on the waiting list. But I can tell you that we’ve had cases, we know of cases where an orthodox family has been a recipient. And the patient has died and they have not donated. And actually not just Jewish people. That has happened with a number of other people as well. But that’s particularly painful. When someone has actually benefited from the miracle of transplantation that someone else donated an organ and then feel there’s still no reason to give back. It’s very painful, and a horrible message.

We had a unique situation a few months ago where there was a very sick dying woman in another state and in need of lungs, and her family was desperate. They were absolutely desperate; they knew she was going to die. This family must have been very well-connected because from all over the city I was getting information, including from the Halachic Organ Donor Society in fact, inquiries, questions, calls about what could be done to help this poor woman. And of course, generally my answer is “you got to get more donors, that’s the only way we can really help”. But that doesn’t help someone in that situation directly. This family was so desperate and, again, well-connected that they actually got into hospitals, ambulance companies. They learned of potential donors and they were making every effort that they could to get to these families even before, in many cases, the patients were dead to talk to them about directing their loved ones lungs to this poor family member. So, I mean, I’ve never seen anything like this. It was a campaign the likes of which I have absolutely never seen. And it just shows how desperate people get at that moment. And of course our goal is not to let people get that desperate. Our goal is that if everyone donated, if everyone that could, donated their organs people would not be in that situation.

Interviewer:
You know I went and met with that family, the siblings of the family. And they refused to get organ donor cards. They were too religious; they were Orthodox, some in Brooklyn, some in Queens, some in New York. And they just .. they don’t believe in organ donation, after all of that.

Elaine Berg:
After all that… that is amazing and very sad. So they were willing to go to everybody else, all shapes and sizes of people, to ask them to donate to their loved one and they’re not willing to sign donor cards. It’s very sad.

Interviewer:
And the reason why is because they don’t think brainstem death is death according to Jewish law. So I said to them well if that’s the case, you were going around trying to get people before they were even brainstem dead to get the families to donate organs, which means that you were kind of promoting, according to them at least, the murder of this individual for you to save the life of your sister or mother, etc. But….

Elaine Berg:
They didn’t see that.

Interviewer:
No, they got angry at me for raising the issue. I would’ve gotten angry if someone also raised an inconsistency in my behavior as well.

Elaine Berg:
You know unfortunately that that’s the reality. There is inconsistency. And it’s something that, you know, I feel as a Jew one of our highest values is justice and there is no justice when you’re willing to take but not willing to give.

Brain death is totally accepted by the medical community. I don’t know of any doctor that doesn’t believe that brain death is death. I just don’t.

We have gotten inquiries from time to time, either by email or by letter or by phone, of people asking if we can refer them to someone who’s willing to sell a kidney. Obviously, this is something we have nothing to do with at all. It’s illegal in the United States and we would never get involved in anything like that. And I honestly don’t think it happens in the United States. I can’t imagine how it would. Other than if two people who had a deal among themselves appeared at a transplant center and introduced themselves as long-lost friends or cousins or something. And that the transplant center then would transplant a kidney or part of a liver from one to another. I think that’s the only way it could happen.

There are two ways that directed donation can take place. Obviously, if there’s a living donor: If I want to donate my kidney or part of my liver, about 90% of the time today I will donate it to a specific person, a relative, a friend, or something. That’s mostly how living donation happens right now in our country. There are some people, not many, who are very altruistic and say that they want to donate one of their organs to anyone. But that’s really very rare. So directed donation for living donors is “I want to give an organ to a specific person.” The same rule can apply for a deceased donor. And as the word gets out about donation, actually, in our experience it’s happening more and more frequently that we will have a discussion with a family about donation and they’ll say “You know, I know someone on the kidney waiting list. Can we direct our loved ones kidney to that person?” And that’s absolutely acceptable. What’s not acceptable is that you cannot direct a donation to a specific race or religion, or profession. For example, say I wanted it to go to a police officer or a firefighter. That’s not acceptable but it’s perfectly legal, even for the family of a deceased donor, to direct one or more organs to someone that they know, but it has to be a specific person. And obviously it doesn’t work a large part of the time because there’s got to be a match. And so what are the chances of that happening? Not that great.

When we do public education for example we get questions about could, in a theoretical way, could we direct a donation to a specific group of people. But I haven’t- in the heat of the moment - heard of anyone answering that question.

Interviewer:
And no one’s held you up, so to speak, and said “I want to donate, but only if it goes to a Jew.”

Elaine Berg:
No they haven’t, and if they did, we would refuse the donation. I mean, that’s how strongly the sanctions are against that type of donation. We would actually give up a donor if someone insisted that it go to a specific group.

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