Straight Talk About the Wait List
Nothing grabs headlines or the public’s attention faster than alarming statistics about the growing organ transplant wait list, the organ shortage, and would-be transplant recipients’ deaths. But just how transparent and accurate is the official data?
The deceased organ donor wait list was established under NOTA 1984 and contracted to UNOS upon its implementation in 1986. To help defray costs, a federally mandated fee* is paid to UNOS for each new registration, which has increased incrementally over the past twenty-five years.
Living donor organs were intended to be a tiny minority of transplants conducted each year. However, improved immuno-suppressants made transplant a treatment option for more folks with end-stage renal disease, creating a greater “need” for organs. Consequently, non-blood relatives became acceptable living kidney donors. Over the years, iving kidney donor transplants increased, surpassing deceased donor kidney transplants for the first time in 2002.
This development was troubling from UNOS’ perspective because the vast majority of these would-be transplant recipients were never registered on the transplant wait list, denying UNOS revenue. So in 2003, UNOS altered their policy, charging the same registration fee for living donor transplants as they did for deceased donor transplants. So far, no one has complained, even though this fee isn’t required by any law, and is generally charged to Medicare or Medicaid, which is supported solely by the tax payers.
In 2015, the federal government gave OPTN (via UNOS) $5.5 million dollars (243). They garnered another $36 million in registration fees (244).
*UNOS also charges two non-mandated (aka voluntary) fees to transplant centers.
Are there really 100,000+ people in the US waiting for a transplant?
In 2003, UNOS/OPTN changed policy allowing kidney candidates/registrants considered ‘inactive’ (ineligible to receive an kidney transplant, due to being too sick, not sick enough, or other reasons) to accrue time on the kidney wait list indefinitely.
This has caused massive over-inflation. At the end of 2003, 16.1% of transplant candidates were inactive as compared to 32.8% at the end of 2007. (57) More telling, 52% of patients on the wait list who died in 2007 were ‘inactive’ as compared with 31% in 2003 (81).
Rob Stein of The Washington Post wrote about this manipulation in 2008. In 2009, OPTN discussed the matter during one of their regular committee meetings. They decided against correcting it, despite how it “misleads the public” (135).
Currently, OPTN’s home page lists “wait list candidates” and “active wait list candidates”, stating that sometimes centers “temporarily” change an individual’s status to ‘inactive’, with no further explanation.
For many years, kidneys have been the only organs that still considered wait time in determining allocation. This encouraged kidney transplant programs to register candidates on the wait list as early as possible, often before it was necessary, also artificially inflating the real need for donor kidneys. In 2014, a new policy removed some of the discretion from the physician, indicating that wait time would begin when a candidate’s GFR drops below 20 or the patient begins dialysis (236).
Approximately, 10% of names on the transplant waitlist are duplicates, otherwise referred to as ‘multiple listings’ or ‘registrants’ (108). People like Steve Jobs, who have the money and resources, can afford to be evaluated and listed at more than one transplant center (with a cost of tens of thousands of dollars per evaluation) in order to increase their chances of obtaining a deceased organ. [See “lengthy wait” section below for a more detailed explanation on this]
Until 2012, up to 5% of a transplant center’s listings could be foreign nationals, otherwise known as non-citizen, non-residents (207). In that year, while other countries, including England, have prioritized their citizens by forbidding such registrations and transplants, OPTN decided to allow unlimited transplants to non-US citizens, non-residents. In one year, the number of transplants to foreign nationals increased 20%. 40% of those individuals reported they were in the country *only* to undergo the transplant (235).
Is the transplant wait list growing, and/or is the organ shortage increasing?
Not according to OPTN’s presentation at the 2011 spring regional meetings where they reported a ‘flattening’ of the wait list since 2007, especially in regards to kidneys.
(see first chart for liver and kidney information)
It’s imperative to remember that organ transplants are not cures. Most recipients will need multiple transplants to achieve a ‘normal’ life span. According to SRTR, approximately 18% of candidates on the wait list at any given time have already had at least one transplant.
From 1999 to 2003, there was a 23% increase in active patients (corresponding to an average increase of 5.3% per year). In 2004, there was a slight decrease, and the yearly percentage increase afterwards was 2%, 2%, 3% and 4% in 2008 (compared with 2007). (138)
Since April 29, 2011, Living Donors Are People Too has conducted random checks of the OPTN’s stated “active” wait list. More than five years later, the active kidney wait list has failed to increase.
FYI: The growth in diagnoses of chronic kidney disease is driven primarily by the increase of Type 2 Diabetes (245). In turn, the rise of Type 2 Diabetes is due to obesity and an aging population (246).
17-20 people (or 10-12% of the list) die every day because they can’t get an organ?
52% of patients on the organ transplant wait list who died in 2007 were ‘inactive’. Half had been inactive for over one year prior to their death (81).Also, the average onset of end stage renal disease is 64.4 yoa in the US, according to the US Renal Data System. Older wait list candidates generally are afflicted with other health problems (co-morbidities) in addition to their kidney failure, which affects their prospects of post-transplant success (prognosis) and expected death (mortality).
Finally, a certain percentage of folks with ESRD, some studies estimate up to 20%, will choose to discontinue their treatment. Their deaths are also included in the official waitlist mortality statistic.
But what about that lengthy wait for a deceased organ?
While NOTA 1984 established a national deceased donor organ transplant system, allocation and management are handled locally. Each of OPTN’s 11 regions are administered by an OPO, or organ procurement organization. The transplant center that harvests the deceased organs first tries to match them with their facility’s patients, then offers them to other programs in the region, and finally, to the entire nation. This has resulted in geographic organ hording and death, as well as discrepancies in wait time depending on where one is registered.
Among new candidates listed between 1999 and 2005, there has been relatively little change in the median time to receive any kidney transplant, that is, from either a Deceased Donor or Living Donor. (138)
In order to comply with NOTA, which calls for a ‘fair and equitable’ system, regions and DSA’s must be eliminated in favor or real national procurement and allocation.
What Can Be Done?
– Implement concrete standards for adding a candidate to the wait list
– Utilize all donated organs, especially from donors over 50 (202)
– Eliminate geographic disparities and offer all organs nationally
– Implement first-person consent in all states (next-of-kin would be unable to override donor’s wishes)
– Consider opt-out deceased donation system (see Spain)
– Increase diagnosis, prevention and treatment of diabetes and kidney disease. According to USRDS, diabetes accounts for 44% of kidney failure, while another 26% is due to hypertension.
As the Multicultural Integrated Kidney Education Program (M.I.K.E.) President Cheryl Neal said in a June 2012 article:
“About 70 to 80 percent of kidney failure is preventable by eating well, staying fit with physical activity, avoiding salt, drinking water – simple things we know can improve our health in general.”