In 2008, the Washington Post revealed that one-third of names on the national waitlist were ‘inactive’, unable to receive a transplant even if an organ became available. Later that year, a study by Delmonico and McBride# reported that 52% of deaths on the waitlist were inactives.
In November 2009, despite the negative publicity, OPTN’s Patient Affairs Committee voted to keep inactives on the list:
The Committee discussed the public perception of the inactive waitlist data and recalled how media attention to inactive waitlist data brought increased awareness of this issue to the public in 2008. It was agreed that since the considerable number of patients listed as status 7 are still in need of a transplant that it is still relevant and appropriate to present the total number of active and inactive patients as being representative of the national waiting list.
A year later, the OPTN website made a small adjustment to their main page. Below the “waiting list candidates” statistic, they now have “active waiting list candidates” with a link to their glossary definition of “active”:
A transplant candidate eligible to be considered for organ offers at a given point in time. Some transplant candidates are temporarily classified as “inactive” by their transplant center because they are medically unsuitable for transplantation or need to complete other eligibility requirements.
(I have doubts about their definition of ‘temporary’ however. According to the Delmonico analysis, 50% had been inactive for at least a year; 18% for 2-4 years; 6% for more than 4 years.)
While it’s not a full correction to the waitlist, at least it’s a small step toward transparency with the public.
#Delmonico FL; McBride MA. Analysis of the wait list and deaths among candidates waiting for a kidney transplant. Transplantation. 2008 Dec 27;86(12):1678-83.