Report on Public Comments – Kidney Transplantation Committee

[Jie]

http://optn.transplant.hrsa.gov/CommitteeReports/interim_main_KidneyTransplantationCommittee_5_26_2011_9_59.pdf
 
It looks like the committee thinks most esrd patients are stupid enough that cannot read their report. It seems it is hard for the committee to understand why most patients cannot agree with the committee that longer waiting times and less quality kidneys are better for the large majority of patients 

[greg10]

This is a case where most of the public and patients are against the professionals and their organizations and the main reason is age discrimination.

"The National Kidney Foundation (NKF), American Society of Transplant Surgeons (ASTS),
American Society of Transplantation (AST), National Kidney Registry (NKR), American Society of
Nephrology (ASN), Dialysis Patient Citizens (DPC), American Association of Kidney Patients (AAKP),
Renal Support Network (RSN), and the American Society of Histocompatibility and Immunogenetics
(ASHI).  Among these, AST, ASTS, NKF, NKR, ASHI, and ASN expressed support for the concepts.  "

http://optn.transplant.hrsa.gov/CommitteeReports/interim_main_KidneyTransplantationCommittee_5_26_2011_9_59.pdf
 
It looks like the committee thinks most esrd patients are stupid enough that cannot read their report. It seems it is hard for the committee to understand why most patients cannot agree with the committee that longer waiting times and less quality kidneys are better for the large majority of patients 

[cariad]

This proposal was discussed in depth a few months ago on IHD.

I disagree with the cry of age discrimination. Having read the original proposal, it takes into account common sense facts. A 70-year-old and a 16-year-old hail from different populations and yes, as ugly as it can be to face it, one has the ability to easily live another 60 years and the other simply does not. The proposal gives priority to pediatric patients, as the current system does. That is no more age discrimination than saying that we should not let 4-year-olds drive. Kids on dialysis suffer lifelong developmental consequences and need to be got off dialysis as quickly as possible. The formula takes many factors into account across the renal patient population. But people are fixating on age. Considering age does not equal discrimination. Age is a biological fact and needs to be considered with everything else. I think it is unfortunate that people cannot accept this, because the system needs to be revised, yet it won't happen if people don't read the proposal properly and think of it in terms of improving outcomes for all renal patients. The professionals and the individual patient are naturally going to be at odds over this: one is trying to increase the fairness across the board, the other is most likely concentrating on his or her own situation and how to maintain their own self-interest.

This latest article is saying that some of the comments did not reflect having read the proposal. Not saying that renal patients cannot read, just that they *did not* read. If people are complaining about things that clearly were not said in the proposal, then one would conclude that they are not getting their information from the document, but from other (ill-informed) sources. If you read the original proposal, they looked at massive amounts of data and recognised throughout that no one system is going to be perfect. I frankly do not want a kidney from an otherwise healthy 20-year-old going to a patient in their 70s and the only way to guard against that type of scenario is to factor in age.

[Jie]

I don't think this is the case that most patients cannot understand this concept report. This concept document clearly shows that more than 70% of patients (patients with ages 50+ and with diabetics) are negatively affected by this approach. This negative effects are understated in the report as well due to the fact that impacts on living donation is not considered in the report.  I am disappointed that PKD Foundation does not have an opinion on this as its memberships will be negatively affected by this. I am not sure what the positions from any diabetic organizations. When you try something to negatively affect more than 70% of patients, you still expect most patients support you and blame the patients cannot read... The brains of these committee members need to be examined.