People with end stage renal disease (ESRD) who don’t get kidney transplants can be divided into four groups. First, they may not be good candidates, so they are never considered for a transplant, Second, they are good candidates, but for some reason either choose not to get a transplant, or are never informed that renal replacement therapy is an option for them. Third, they may be on the transplant waiting list but got on too late, or are consistently skipped over because other patients lower on the list are deemed better candidates. Finally, they may be good candidates and want transplants, but are not able to get a kidney because no matching donors becomes available in time. In all cases, the patients will remain on dialysis. In the last three cases, the patient will likely die prematurely.

Live donors shorten waiting time

Today’s blog entry will cover the last two cases, where kidney patients spend too much time waiting for a kidney. While researching issues in ESRD, I noticed something. Although many people die while waiting for a kidney transplant, there are others who are getting their second or third kidney transplant. What causes this disparity? Part of the difference is caused by how kidneys are allocated. Currently, the United Network for Organ Sharing (UNOS) allocates all kidneys harvested from cadavers. Kidney patients are put on a waiting list and receive a kidney based on geographic location, time on the waiting list, and antigen match. This explains some of the difference. Patients with type O blood wait longer since they can only accept a kidney from a type O donor. Recent immigrants and minorities are less likely to allow organs to be harvested from a deceased relative, so regions of the country with large populations of these groups have longer waiting lists than others.

However, most of the difference in wait time is because kidneys from live donors are not allocated via the UNOS. There are no national regulations on how to allocate kidneys from live donors, except that donors cannot be compensated (more about that in a later blog post). Family members and friends of a patient with ESRD can direct a donation of their kidney to the patient rather than to the next person on the UNOS waiting list. (This makes sense, most donors were not planning to donate a kidney to a stranger. They will only follow through with the donation if it is transplanted into the designated recipient. The exception is the willingness to donate to a stranger as part of a paired exchange.)

But this means patients who can find a live donor have a much shorter waiting time than those who don’t. Given the long waiting times for a deceased donor kidney (up to six years in California), many patients with no live donor lined up die before they get to the top of the list. What prevents these patients from finding a live donor? Here are some possible reasons: 1) they don’t want a kidney from a live donor (perhaps for ethical or religious reasons), 2) they are not aware that live donors are an option and so don’t look for donors, 3) they would like a kidney from a live donor, but have a very small social network and don’t know how to ask strangers for a kidney (or are not aware that they can ask a stranger for a kidney), 4) they are afraid, embarrassed, or otherwise unable to ask someone (either an acquaintance or a stranger) for a kidney, or 5) they have asked but so far everyone has turned them down or is not a match.

Which patients ask for live donors

I’ve searched for statistics on how many kidney patients fall into each of the above categories, but I cannot find any. However, I did find a study published in the Oct 2009 Amer. J. Transpl. that reports that among all kidney patients who actually received a transplant, recipients older than 50 years of age, African-Americans, and those with lower education level were less likely to receive a live donor renal transplant (LDRT).

A survey of kidney patients reported in the Feb 2006 Amer. J. Kidney Disease found that African-American kidney patients were less likely to accept their diagnosis of ESRD. This attitude may have made them less likely to be persuasive in asking for live donations.

Even if the patient is convinced they will die without a transplant, asking for a kidney donation is emotionally difficult, even within the family. A survey of kidney patients reported in the Apr 2009 Nephr. Dialy. Transpl. found that fewer than half of patients who had heard of LDRT considered it. Further, among those considering it, fewer than half had actually asked anyone for a donation.

Consider the case of Steve Farber. a well-known attorney in Denver. In his book, entitled On the List: Fixing America’s Failing Organ Transplant System, he gives a detailed account of his search for a live kidney donor. (Much thanks to Carol Borthwick of QEAN Medical for pointing me to this book after reading a review of it in the Denver Post Sep 20.)

Mr. Farber doesn’t fall neatly into any of the categories I defined above, though 4 and 5 come closest. He knows that his best chance for a transplant is to find a live donor. He is actively looking for a donor. He has a large family and has a large social network. As a high-powered attorney he is not shy about asking for and getting what he wants. However, because of family dynamics, Mr. Farber decided he could not accept a kidney from any of his three sons.

Although he never says it, here’s why I think Mr. Farber couldn’t find a donor. First, once his wife said that none of the children could be a donor, Mr. Farber felt he could no longer approach any of his friends or acquaintances since this would reveal that he considered their lives to be of lower value than the lives of his family members.

Helping kidney patients find live donors

Interviewing patients on the UNOS list may reveal useful data on how actively they are seeking a live donor, what tactics they have tried, what was the reason for success (for those who found a donor and underwent a transplant), and why they believe they have been unsuccessful to date (for those still on the waiting list). One such survey reported in Dec 2009 Amer. J. Transpl. finds that patients who are younger, with higher incomes, and had greater self-efficacy (a measure of the participant’s belief in his/her ability to attract a donor) were more likely to find a live donor. Having detailed knowledge of the live donor process was not a good predictor of success in finding a donor. Thus, providing additional patient education on the donor process may not significantly increase their success in finding live donors. Instead, programs to increase patient self-efficacy may be more helpful.

A study reported in Amer. J. Transpl. Feb 2007 found that providing home-based training was more effective in helping patients find a live donor than training provided in a clinical setting. Similarly, a paper presented at Amer. Soc.Nephr. Oct 2009 reports that informal get-togethers with the kidney patients’ family and friends increased their willingness to donate. These results indicate that transplantation centers should do more outreach to assist kidney patients overcome barriers that prevent them from successfully facing family members and acquaintances to discuss ESRD and educating them about the live kidney donation process.

Finally, if you are a kidney patient and want to learn more about asking someone to be a kidney donor, some advice is provided by Living Donors Online.

[Update1: There is an organization dedicated to educating kidney patients about finding a live donor called Living Kidney Donors Network, see Feb 2010 blog post.]

[Update2: Parts of this post have been moved to a new post.]

[Update3: Found another article that discusses the psychological barriers that prevents some patients from seeking a live donor, Transpl. Oct 2007.]