If you're reading this in New York City, you may have noticed the latest New York Organ Donor Network subways ads announcing that "every 15 hours a New Yorker dies waiting for an organ." The disquieting statistic is accompanied by an image of a pair of pale corpse legs -- toe tag and all -- waiting in line. Throughout the United States, more than 115,000 people are currently waiting for organ transplants, and last year almost 7,000 individuals died waiting; about 90 percent of them for a kidney. Roughly the same number will die this year too. "That's equivalent to 13 747 jets filled to capacity crashing every year," Dr. Barry said in a TEDx talk he gave last year on the subject of organ donation. "And there are no survivors."
Dr. Barry works out of the University of Rochester Medical Center and is one of the co-founders of bLifeNY, an ongoing transplant awareness campaign. In 2012, transplant surgeons like Dr. Barry performed some 28,000 organ transplants in the United States, nowhere near as many as they could have if they had the requisite parts. Here Dr. Barry discusses the reasons for the shortfall, and how it might be overcome.
The transcript has been lightly edited for clarity.
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Most transplant surgeons do what they can in the operating room and leave activism to others. Why did you decide to co-found blifeNY?
My advocacy efforts grew out of the conversations I had with Mark Orloff [Chief of Transplant Surgery at University of Rochester Medical Center]. We've been doing the same thing for decades and it hasn't been very effective. Organ donor registration rates are in New York State are dismal. Only 21 percent of eligible people in New York are registered organ donors; that's the 48th worst in the country. So we put together this grassroots organization and started trying to engage young people -- college students, medical students, even high-school students -- and interested transplant professionals. Young people get it. They're enthusiastic, they're creative, they're very social media savvy and they want to help change the world. We started doing things that the other organizations haven't done in the past, mainly showing up where people didn't really expect us. We went to the Greentopia Festival in Rochester, put up a tent and encouraged people to recycle themselves. That was hugely popular. We signed up hundreds of people two years in a row and are going back again this year.
There is still much work to be done. Transplant professionals need to step up and engage in social activism. We need to challenge the culture of silence around organ donation.
The last decade has seen the number of patients waiting for a transplant double. What accounts for this dramatic rise?
The success of transplantation. It's ironic, isn't it? Because transplant is so incredibly successful -- in percentage points, the success rates are in the seventies and eighties even in the long term -- it's become the go-to standard of care option. The benefits of having a new kidney from a transplant, as opposed to staying on dialysis, are increasingly clear. Compared to someone on dialysis, a recipient of a new kidney has a longer lifespan, a much better quality of life and is a more productive citizen. From a public health standpoint, it's hugely cost-effective. As they see all these success stories, people are becoming less afraid of the idea of transplant, and primary care physicians are increasingly comfortable referring their patients to transplant centers for evaluation. So there are a lot more people on the list.
Upwards of 90 percent of Americans say they support organ donation, but the national donor registration rate hovers around 38 percent. Why aren't more Americans signing up?
One issue is that it's difficult to sign up in some places. For example, in New York State, you have to find a form, print it out, fill it in and mail it. Other states that have higher registration rates employ electronic registries and make it very easy for people to go online, click a button or two and register. Some of the highest registration rates are seen in states that have made it easy for people to register; the registration rate in Utah, for example, is greater than 70 percent.
So there's the technical issue of just making it easy to sign up, putting registration on the path of least resistance. But it's also very human and natural to not want to think about dying. And that's what we need to overcome. Appealing to other deeply embedded emotions can help overcome the discomfort that accompanies thinking about death and profound loss. We need to ask people: If you or a loved one needed a transplant, wouldn't you want there to be organ donors available? What is the downside to donating after you've passed?
But organ donation awareness by itself isn't going to be enough to close the gap between people needing transplants and donors available. That's going to come with technological advances.
What technological barriers stand in the way of meeting the need for viable organs?
The main technical issue is that we rely mostly on patients who progress to brain death, which is a highly specialized and unusual state in which the brain stem no longer has activity. The person is indeed dead and they're never going to come back -- that's medically and legally recognized -- but the heart and lungs can be maintained by artificial mechanical means. The lungs continue to deliver oxygen through mechanical ventilation and the heart either continues going on its own or is sustained by pharmacologic support. Now, of all the 16 million people who die every year in this country, only about one percent of them actually progress to brain death. The vast majority die sudden deaths -- trauma, heart attack on the street, stroke -- and of the one percent that progress to brain death (usually in a hospital setting; in the ICU), an even smaller portion of those brain dead individuals will be suitable organ donors. They may not be suitable because of medical reasons or because they haven't expressed their consent prior to dying. As long as we have only this very very limited supply, even if everybody was a registered organ donor in this country right now, it wouldn't solve the organ donor shortage. What we need to do is to develop the technology to use organs from sudden death victims. There is movement in that direction, but we're not ready for prime time yet with that technology.
There' s a different type of donation referred to as Donation after Cardiac Death, or DCD, in which patients are not brain dead but they've suffered a massive injury to the brain and they're not expected to survive the removal of life support. When that happens the patient's family is approached by the organ procurement organization and they talk about the possibility of the person becoming a DCD donor. Once consent is obtained, there's a controlled choreography of events: the patient passes, and as soon as the patient is pronounced dead by a separated physician -- separate from the transplant professionals -- the transplant surgeons recover the organs for transplant.
Now those DCD organs do not work as well as brain death organs, because during a brain death recovery operation the heart is still beating and the lungs are still breathing until the very end; the organs still have the maximal time with their blood and oxygen supply. With a DCD, there is a period of time where the organs aren't receiving oxygen and blood flow. Kidneys from DCD donors actually work quite well, but lungs and livers do not. But there's hope. There are groups in Toronto and at Columbia University recovering lungs from sudden death victims. They put the lungs on to mechanical ventilation devices in a lab, and test them to see if they can be revived to be suitable for transplant. The same sort of thing can and is already starting to happen with livers. Being able to successfully use those DCD donors will be the entre into the possibility of using all sudden deaths victims who are consented. Then there will be enough organs.
I think that strategy, combined with biomedical devices (stem cells and biologic and biosynthetic scaffolds; you see the articles in the popular press about growing organs in labs), and the very real advances in heart pump technology and kidney dialysis pump technology are ultimately going to solve the organ donor shortage.
24 countries in Europe have adopted a "presumed consent" system, whereby all citizens are organ donors by default and can opt-out if they choose. In Austria, France, Poland, Portugal and elsewhere registration rates are over 99 percent. Might something like this work in the United States?
I don't think the United States is culturally and psychologically ready to accept an opt-out system. That hopefully will change as the younger generation, which appears to be more amenable to the idea, grows up and assumes positions of responsibility. But right now there are very strong emotional reactions against opt-out. The strongest argument takes the form of "Well, it's a very personal decision and I don't want the government making that decision on my behalf." The fallacy of that argument is that they do have the choice; they can just say no.
It's a very touchy, emotionally charged subject. There are certain religious organizations that are very much against opt-out because they feel that that would be a sign of the government playing God and making these highly personal decisions for the individual. Even the medical establishment is pretty much against opt-out at this point. So I don't think it's time, but there are some of us out there who feel that anything that can help save lives and increase the donor pool is worth considering.
I'm actually in favor of an opt-out system here in the United States. I don't think it's going to happen any time soon. But with the appropriate education efforts, I think that there could be a time in the future, hopefully in the near future, where America is ready to consider a system that would save thousands, if not tens of thousands of lives, every year.
That being said, even if opt-out were initiated in this country, it wouldn't solve the disparity between recipients and donors. Even in Spain, which has an opt-out system and a very high registration rate, there are people who are dying on the wait list. As I mentioned before, other things need to happen.
Almost 11,000 human organs were purchased on the black market in 2010 -- the vast majority of which came from impoverished individuals in developing countries. Is there a relationship between the scarcity of viable organs in the United States and the booming, illegal trade in human organs abroad?
There are booming black markets in organs all across the world. There are always people who have the means to travel and pay for these services that they may not be able to get at home, and there are always desperately poor individuals who will do anything that could potentially get them out of their poverty.
I doubt that there are many Americans who engage in this type of medical tourism, but I have met patients who have gone to foreign countries and have come back with transplants. I've taken care of them because they've had complications from these transplants. So, I do know that it happens, but I don't think it happens very frequently in this country. Most of the people who need transplants in this country don't need to go elsewhere. Because we have such a highly efficient transplant system and successful therapies, people would only consider medical tourism and engaging in black market trade under extreme circumstances.
That's not to say this type of behavior isn't rampant in other parts of the world. It's a big problem. There have been studies on the economic impact of selling an organ on the black market. The vast majority of people who have sold an organ on the black market are not lifted out of poverty.
Now there are some people who have argued that we should monetize transplant in this country. There are strong economic arguments on paper that a free market would increase the number of transplants performed, but I don't approve of monetizing transplant in this country, because what that means is that wealthy people will be able to pay less wealthy people to become donors and the poor people who need transplants aren't going to be able to afford to buy an organ from anyone.
Beyond registering to become an organ donor, what can one do to help close the gap between the demand and supply of viable and ethically sourced organs?
It's vitally important that people talk about organ donation, and feel comfortable talking about it. As a society, we need to normalize the idea of being an organ donor. The idea of organ donation needs to be elevated in our public conscience and embedded in our culture. People shouldn't feel embarrassed, or scared or grossed out, talking about it. Encouraging the conversation is the first step, and the most critical.
By David Kortava of The Morningside Post