The need for organs for transplants far exceeds the supply

Published on
February 9, 2011

During my reporting on organ donation for my fellowship project, one source's quote stood out. "I'm a living example that organ donation works," Vicky Mai Nguyen told me. She's a 26-year-old woman who's in good health and thriving. Had it not been for a liver transplant, she likely would never have made it to 2.

It's true that organ donation is a remarkable altruistic act that can save and extend others' lives through transplantation. But unfortunately, the number of men, women and children on organ waiting lists far exceeds the number of organs available for transplantation.

This situation is especially dim for people waiting for a kidney transplant. Of the 110,000 people on wait lists nationwide at the end of 2010, about 88,000 needed a kidney. In 2009 - the last full year for which statistics are currently available - only about 11,000 kidney transplants were performed. For those not fortunate enough to be a kidney recipient, this means staying on debilitating dialysis treatment and perhaps looking for a living donor. But thousands of others will die each year before an organ becomes available. Doctors call it "wait list mortality."

Such disconcerting statistics emerged as I researched and wrote my project as a 2010 National Health Journalism Fellow. I used these figures to demonstrate the overwhelming need for more organ donors. At the same time, I was able to write uplifting stories about Vicky Nguyen and others whose lives were extended by getting an organ transplant. In addition, I described how family members of deceased organ donors have felt a measure of consolation by knowing that their loved ones helped someone else to continue living.

Before my project, I knew a fair amount about organ transplantation but little about the supply side - the organ donation process. I queried some friends and found that people's lack of knowledge appeared to be common.  Once I began research, I learned that organ donors are more likely to be whites and that people of color often hold back on donation because of various misconceptions. I was told by experts that a need existed for better awareness within these communities. So, after being accepted and taking part in the fellowship conference, I wrote for two Los Angeles ethnic media publications and an online news site. I ended up doing seven articles in all.

Another reason for my interest in the organ donation topic was a personal experience. Meri, my beloved wife of almost 41 years, was on a waiting list for a liver transplant in 2009. She had undergone a rigorous series of medical examinations and debilitating treatments before she was finally approved for the list. However, no liver became available when she was near the top of the waiting list. Then, she became too ill for the surgery to be performed. She passed away at home seven days after leaving the hospital.

At some point, I may write about those experiences. But I was not ready to go there, and I did not want to distract from the articles' focus. My goal was to inform readers about the current state of organ donation in the Greater Los Angeles region.

Getting my head around this subject took long hours of research and interviewing. As is often the case in researching a new subject, I had to learn the vocabulary of the field and, in this case, how statistical categories are assembled. I received excellent assistance from media specialists at the national Organ Procurement and Transplantation Network, or OPTN. I learned that interpreting the vast volume of data about waiting lists, donors and transplants can be tricky. For example, separate figures are kept for waiting list "candidates" and "registration." And among other things, you have to distinguish between "living donors" and "deceased donors." And because each deceased donor can contribute from one to eight organs, the number of donors and organs recovered will not be the same.

My first three stories were for La Opinión, the dominant Spanish-language newspaper in Los Angeles. I interviewed the medical director, media specialists and community coordinators at OneLegacy, the Greater L.A. region's organ donation agency. Gabriel Lerner, my editor at La Opinión, and I decided to break up my material into three stories – a main piece, a sidebar about two kidney recipients and a third about the group of dedicated Latino volunteers who spread the word about donation. For the main piece, I focused on the large waiting list for kidney transplant. Among 3,700 Latinos now on organ waiting lists in the L.A region, 80% of them are in need of a kidney or both a kidney and pancreas. I cited figures from the Los Angeles County Department of Public Health showing soaring rates of obesity, diabetes and hypertension in the community. I worked in a health angle - doctors urging a healthier diet and greater exercise to curb obesity.

I also did interviews for two video stories produced by La Opinión. They were highly effective because they show people describing their experiences in their own words - and at times -through their tears. La Opinión also ran a Q and A, prepared by OneLegacy, countering many of the misconceptions about organ donation.

Next I moved to my reporting for LA Beez, an online collaboration of ethnic media outlets. This came while DonateLifeAmerica was decorating a parade float for the New Year's Day Tournament of Roses. I met the members of the Arana family there as they decorated a floral portrait of Marco Arana Jr. Elsa and Marco Sr. had just had an emotional meeting with David Jones, a 29-year-old man. Jones had been near death before he received a transplant from a kidney of Marco Arana Jr.  Through this example, I was able to illustrate the power of organ donation in human terms.  I also did a sidebar on three people honored on the Rose Parade float. One of them, Ann Lopez, was a "live donor" of a kidney to her husband, comedian George Lopez, in 2005.

My final two stories ran in both English and Vietnamese in Nguoi Viet, an Orange County-based Vietnamese-language newspaper. As with other groups, there is an extensive waiting list for kidneys  among Vietnamese Americans. Two doctors told me that liver diseases also are a major problem because many community members acquired hepatitis B or C in Vietnam. Vicky Nguyen's story brought home the importance of organ donations.

I'm grateful to The California Endowment Health Journalism Fellowships for this opportunity to take part in this program. It's difficult to assess the impact of stories such as these. Health education via the media is an incremental process and, I believe, the more times the message is presented, the better the outcome.