Desperate means shed light on US organ scarcity
A 24-year-old Houston man has become so desperate for a kidney donation that he is taking his search to the streets.
Victor Robles has been on dialysis for 1.5 years. Every day, he is hooked to a dialysis machine for 12 hours to stay alive. He is on a transplant list, but he is afraid he cannot wait any longer for a match because his test result shows that dialysis is not working well enough for him.
So, in his spare time after work, Robles finds a corner in Houston and stands with a sign: “I don’t want money. I just need one kidney. Who can help?”
“For another chance for me to live,” Robles told the local CBS affiliate over the weekend. “I want to get married, have kids, work for what I want.”
Robles’ proactive approach coincides with a review by the White House’s US Digital Service that found that the program matching donors and patients for organ transplant and run by the United Network for Organ Sharing, or UNOS, needs to be improved or restructured, according to the review as reported by The Washington Post on Sunday.
The review was completed 18 months ago and found that the system relies on outdated technology, experiences periodic system failures, has programming mistakes and overly relies on manual input of data that can lead to mistakes or narrow the timing window for successful organ matches.
During the investigation, it was found that the critical computers connecting the transplant network have crashed a total of 17 days since 1999. One outage that occurred in February last year lasted three hours. It is a serious problem, because organs can lose vitality in four hours.
It was found that a programming error pushed some lung patients lower on the priority list than they should have been before the mistake was caught by a different federal contractor analyzing patient data.
The investigation also found that the technology that runs the transplant system is not only far behind current standards, but also unlikely to catch up. In addition, the report said “there are no requirements, or mechanisms to create requirements, in the current contract” to force UNOS to upgrade its technology.
Organ donation in the United States is in high demand. According to the UNOS website, 105,885 patients are waiting for a donation, with a kidney most in demand. Roughly 22 people a day die waiting for organs, it said.
Last year, organ transplants in the US reached a record high at 41,354. There were 24,669 kidney transplants, 9,236 liver transplants and 3,817 heart transplants, according to the UNOS.
A data report by the Scientific Registry of Transplant Recipients shows that within five years, only about a quarter of patients on a waiting list received a kidney transplant from a deceased person. However, about 21 percent of kidney donations were wasted in 2020.
In comparison, European countries report much lower rates of wasted kidneys, the Post reported. France had a kidney-discard rate of 9.1 percent from 2004 to 2014. The United Kingdom’s rate ranges from 10 to 12 percent.
Catherine Frenette, former medical director of liver transplants at Scripps Green Hospital in San Diego, said a patient died because of a lack of coordination with UNOS.
The review recommended that the government should break up the current monopoly by UNOS to separate the contract for technology and policy responsibilities such as deciding how to weigh considerations for transplant eligibility.
UNOS has been the only nonprofit organization contracted by the federal government to run the organ transplant program in the US since 1984.
It regards its computer code running the program as a trade secret. UNOS said the government would have to buy it outright for $55 million if it ever gave the contract to someone else, according to the White House review.