by Shannon Firth: Complete Post through this link…
Patient representative has “zero confidence” in change if UNOS remains involved.
Patients, advocates, and one rogue organ procurement organization (OPO) executive, among others, pledged support for legislation that aims to disrupt a decades-long monopoly over the U.S. transplant system during a hearingopens in a new tab or window of the Senate Finance Subcommittee on Health Care on Thursday.”Every day 17 people die while on organ transplant waiting lists and another 13 are removed from the waiting list because they’ve become too sick to receive a transplant,” said Sen. Todd Young (R-Ind.)
LaQuayia Goldring is one of the more than 100,000 people on that list. At age 3, Wilms tumor, a rare kidney cancer, took over Goldring’s left kidney. She went into kidney failure and received her first transplant when she was 17. By the time she was 25, she was back in kidney failure.
She has waited “9 agonizing years” for a transplant and is now dependent on dialysis 5 days a week.Just a few weeks ago, a donor family reached out to Goldring having chosen her for a kidney transplant, but because of a glitch in the United Network for Organ Sharing (UNOS) system, her status was listed as “inactive,” she said. She contacted them and was told this was due to a “clerical error.”
This was not a one-time error, Goldring noted.”UNOS technology is unsecure and unreliable and it crashes hourly and, during that time, transplant candidates are not getting phone calls,” she said. “Every time this happens, patients like me continue to die.”
