Flora Kim has been anxiously waiting for a new kidney since 2013.
The 37-year-old Ewa Beach resident became diabetic in her teens while still in high school and has been on dialysis 16 hours a day to clean her blood now that her kidneys can no longer do the job.
Hawaii had the second- longest wait time for organ transplants in 2018 with 22.5%, or 250, of patients waiting five years or longer, according to a new study by HealthTestingCenters.com, an online company based in Florida that markets lab testing directly to consumers. The company used data from the U.S. Department of Health and Human Services’ Organ Procurement and Transplantation Network. Alabama had the longest wait time.
Nationally, the wait list for organ transplants is growing, with the donations “far outnumbered” by the patients who are in need. In 2018, 113,000 patients were on wait lists — 5,800 dying before getting a transplant.
“Being on dialysis and having kidney disease has been really difficult for me. I graduated from high school right before my kidneys totally failed. I was never able to work. A lot of times I don’t feel well,” Kim said. “When you’re on dialysis and you’re faced with this long waiting time, you become uncertain of … what the future holds for you.”
National Kidney Foundation of Hawaii CEO Glen Hayashida said Hawaii is at a disadvantage because of the size of the population and smaller donor pool.
“A transplantable organ is a scarce resource,” he said. “It really comes down to a supply-and-demand issue. These two factors (population size and smaller donor pool) alone make the list of possible organs smaller to start with.”
Despite an 18% increase nationally in the number of organ transplants between 2015 to 2018, the gap between the number of people needing a transplant and the number of organs available continues to widen, he said.
In addition, Hawaii has not achieved the same rate of living donors over the past three years as the rest of the nation. About 40% of all donors are living, he said.
The higher rate of kidney failure and other chronic diseases in the islands also contributes to the growing number of people on the waiting list. Hawaii has one of the highest incidences of kidney disease in the U.S. per population due to Native Hawaiians having a higher rate of diabetes and hypertension among the Asian population.
“Many of Hawaii’s residents who are on the waiting list have been on the waiting list for more than five years, and they die waiting for a transplant,” said Nancy Downes, director of marketing at Legacy of Life Hawaii, the state’s organ procurement organization, adding that only 63% of the state’s 1.1 million adults are registered as organ and tissue donors.
What’s more, organ donations for ethnic minorities are far lower than in the white population.
“It’s partly that lack of awareness. Also, culturally it’s difficult sometimes for Asian Americans and the older generation of Asians to want to donate,” said Dr. Alan Cheung, medical director of the Queen’s Transplant Center, which has more than 300 patients on the waiting list for organs. “There’s a cultural belief that there’s an afterlife where they want to keep all their organs. They kind of don’t believe in donating organs.”
In 2018 the Queen’s Transplant Center, which opened in 2012 following the closure of Hawaii Medical Center’s transplant program in 2011, did 66 mostly kidney replacements. So far this year the center has done 34. That compares with 63 in 2017, 67 in 2016 and 64 in 2015. About a decade ago there were nearly 100 transplants done in Hawaii.
“There’s definitely room for improvement,” Cheung said.
Of the 306 patients on the Queen’s list mostly for kidneys and livers, 16% have been waiting for more than five years. The average wait time is roughly 3.3 years, an improvement from 4.5 years two years ago, said Jennifer Watarai, Queen’s transplant administrator.
“This is really about us needing more donors. The reason why people are on the wait list is because we don’t have enough donors to transplant them — deceased and living donors,” she said, stressing the importance of people registering to be organ donors. “For patients already on the wait list, they can talk to family and friends and get a living donor. That will expedite the time they’re waiting.”
If living donors and patients aren’t compatible, they can join a special National Kidney Registry to potentially swap with a compatible pair elsewhere, she said.
“I think about it every day. I think about the day the transplant center calls me and says that ‘we have a kidney for you,’” Kim said. “I try not to be too discouraged because it’s going to make those years much harder. I remain hopeful.”
