By MEG HECKMAN
At his home outside of Boston, Jim McHugh describes the liver transplant that saved in his life
Organ and tissue transplantation is a rapidly-developing area of medicine, one that’s rich with the potential to save lives and fraught with tough policy questions. The demand for replacement organs far outweighs the supply, so many patients die waiting. Others are willing to take drastic steps — like moving to another state or a foreign country — to get the organs they need to survive. Producer Meg Heckman brings us the story of Jim McHugh, a man in dire need of a liver transplant, and how his move to Indiana from New England during a snowstorm proved to be incredibly fortuitous.
Doctors are trying to improve the situation by promoting organ donation, developing new surgical techniques and rethinking the way some organs are allocated. Dr. Fredric Gordon, the Director of Liver Transplantation and Hepatology at the Lahey Clinic in Burlington, MA, is involved in those efforts. In this edited transcript, he talks about some of the challenges surrounding modern organ donation:
MEG HECKMAN: The waiting time for organs varies widely in different regions of the United States. Why?
DR. FREDERIC GORDON: You have to go back into the history of organ allocation. When it was all set up 40 or 50 years ago, really at the time, only kidney transplantation was being done. The regions were drawn based on kidneys and the population at the time and the need….Over time, the population has changed, the demographics have changed, the need for organs has changed so now there are these huge disparities across the country in terms of waiting time, which probably were very equal in the beginning.
HECKMAN: Sometimes, a patient’s best chance is to move to another region of the United States, where a particular kind of organ is more plentiful. At what point do doctors like you typically suggest that strategy?
GORDON: That conversation about going elsewhere to seek out transplantation actually happens very, very early. I feel obligated to give full disclosure, so when we first meet we talk about getting on the list…how long it might take to get a liver transplant in New England and that there are other options. Those include a live donor liver transplant which we can accomplish at [Lahey,] or going someplace else where they have shorter waiting times.
HECKMAN: How often do patients move in hopes of getting a transplant?
GORDON: Most of them actually don’t even have the option to do that [because] their insurance is a local or a regional insurance and it won’t be covered outside of New England….Some of them just say, ‘listen, we’ve made such a good relationship with the doctors and nurses here that I don’t really want to go anywhere else’…Other people say, ‘I don’t have any support systems. I don’t have the ability to go anyplace else. I can’t live in a hotel day after day, week after week waiting for a liver.’
HECKMAN: What are the emotional consequences of a move like this?
GORDON: It’s difficult for the patient and it’s very difficult for us as the physicians. A lot of times we’ve been taking care of these patients for years and years. We know the patients very well, and we know their history. We know their families. Now they have to go out to a different part of the country and almost, start over with some people who are completely unknown to them and a place that’s unknown to them.
HECKMAN: How does this practice compare to more extreme forms of transplant tourism?
GORDON: [It’s] national transplant tourism as opposed to international transplant tourism. It used to be that anybody who had the wherewithal could go to China and very easily negotiate an organ transplant. The quality of the organ, whether it was disease free — your guess was as good as anybody’s. There are still some places in the Middle East where you can do that. That’s sort of taking transplant tourism to the extreme. If you stay within national borders…there’s no cheating anyone or bypassing anyone or paying for an organ, which is illegal in the United States. You’re basically going to where the organs are, and you actually have the right to do that.
HECKMAN: Are there other countries that are handling organ allocation in a way that the U.S. could learn from?
GORDON: Absolutely. There are countries — Spain comes to mind — where they have a concept of presumed consent. Presumed consent means that you are an organ donor until you opt out or you family opts outs. In the United States it’s the opposite — you’re not an organ donor until you opt in. It’s a cultural difference, but they’ve accepted it in parts of Europe. The waiting times in Spain have dropped dramatically… If that were to go on here, I don’t think realigning the nation to allocate organs differently would matter because there would probably be enough organs for everyone who needs them.
HECKMAN: What other ways can you increase donation in the U.S.?
GORDON: A lot of it is just myth busting. There’s a lot of mythology out there that people are more valuable as parts rather than as a whole, that if you’re an organ donor you’re not going to get the same quality of care. That’s just absolutely false. [Organs] are of no use to you as a deceased person, but they could be of use to someone else. It’s not really violating the body or violating the spirit to help someone else out.
For more information about organ donation, please visit organdonor.gov or donatelife.net.
Transplant Tourism | New Hampshire Public Radio.