Due 6/15! Proposal to Include Bridge Donors in the OPTN KPD Program

[Clark]

http://optn.transplant.hrsa.gov/PublicComment/pubcommentPropSub_303.pdf

Comment Deadline:  June 15, 2012
Your opinion counts! Public comments on proposed policies are vital to the policy development process. Voice your support for, opposition against, or neutral stance on the proposed policies listed below.
http://optn.transplant.hrsa.gov/policiesAndBylaws/publicComment/submitYourComment.asp?PropID=327

Proposal to Include Bridge Donors in the OPTN Kidney Paired Donation (KPD) Program

Affected Policy: Policies 13.4.4 (OPTN KPD Program Process Consents), 13.6.2 (Requirements for Match Run Eligibility for Potential Donors), 13.6.6.2 (Logistical Requirements), and 13.10 (Definitions)
Kidney Transplantation Committee
The goal of this proposal is to increase matching opportunities in the OPTN KPD Program by allowing bridge donors (a donor who does not have a match identified during the same match run as his paired candidate) in the OPTN KPD Program. Currently, the OPTN KPD Pilot Program requires that donor chains end with a donation to a candidate on the deceased donor waiting list. As a result, donor chains could end when there may be the potential to extend the chain and transplant more candidates. Additionally, many transplant hospitals have expressed a desire for the OPTN KPD Program to include bridge donors. A secondary goal of this proposal is to increase participation in the OPTN KPD Program by providing more options for participating transplant hospitals. The proposed changes would allow potential donors who are not matched in the same match run as their paired candidates to enter a later match run to find a KPD match rather than donating to the deceased donor waiting list.
Note: These policies are also being proposed as new policies in the Proposal to Establish KPD Policy, which is also out for public comment in Spring 2012.
Affected Groups
Transplant Administrators Transplant Data Coordinators Transplant Physicians/Surgeons PR/Public Education Staff Transplant Program Directors Transplant Social Workers Living Donors
Number of Potential Candidates Affected
This proposal will impact approximately 200 candidates currently in the OPTN KPD Pilot Program as well as any candidates who may join the OPTN KPD Program in the future.
Compliance with OPTN Key Goals and Final Rule
The inclusion of bridge donors in the OPTN KPD Program addresses the OPTN key goal of increasing the number of transplants.
Specific Requests for Comment
1. Should there be a limit on how long a bridge donor will be asked to wait in the OPTN KPD Program after his candidate receives a transplant?

[WilliamLFreeman]

Background:  "Bridge" donors are living donors in the chain who have no recipient to match with.  That situation can happen in either of two ways:  a] no recipient matched when the chain was developed, and no potential recipient has matched with the living donor by the time her/his partner received a kidney via the chain.; OR  b] the living donor had a match that extended the chain when the chain was developed, but the chain unexpectedly broke due to a change of the living donor's intended matched recipient.  (For instance, the recipient may have become ineligible to receive a kidney transplant, or may have received a kidney from outside the chain.)  The living donor at the end of a chain usually donates "to a person on the waiting list" of the Transplant Center in which the non-directed donor started the chain.  This Proposal states that the living donor in that circumstance could become a "bridge" donor instead, that is, could "bridge" from the old chain to start a new chain.

In this Policy, all living donors in an OPTN chain would be asked when first volunteering to be in a chain if she/he wanted to be a bridge donor should the above circumstances arise.  (Why might some living donors in a chain not want to be bridging donors, but just be part of the chain?  Perhaps, for instance, they wanted to donate right after their non-matching partner-recipients received the transplant by the chain, and not wait a period of time to see if a new chain could start.)  Those living donors who answered "yes" to being a "bridge" donor initially would then be asked if/when the circumstances arose and every three months thereafter, until either they donated or they changed their minds and said "no" (thus donating "to the list").

Possible issues special for Living Donors:

Imagine you were part of a chain -- you had a partner-recipient you had wanted to donate to but were not a match, so you and your partner volunteered to join a chain.  Then imagine the following scenarios.  (If you were part of a chain, imagine that the following scenarios had happened to you.)

QUESTION:
  A]   Would you want to be a "bridge" donor, thus perhaps donating at a time quite a bit later than you incompatible partner-recipient received his/her transplanted kidney by the chain?

Assuming that this Policy will be adopted, most of the discussion in the Living Donor Committee [LDC] and Regional meetings have focused on two subordinate questions.
   *   First, for those who answered "No" to the initial query by the Transplant Center about being a bridge donor, should the Center be permitted to re-ask that question if the circumstance arose, or "verify" that the living donor had not changed her/his mind and still did not want to be a bridge donor?  (In the discussions, one concern expressed was that re-asking might be seen by some living donors as the Center pressuring them to change their minds, instead of just accepting their original decision "No."  An opposite concern expressed was that not re-asking, or not "verifying," restricted the choice and decision-making by the living donors, because they would not be given an opportunity to choose differently.)
   *   Second, should the policy require the Transplant Center to verify if those living donors still did not be bridge donors?  (This question concerned whether Transplant Centers could decide not to verify the choice if they did not want to, VS forcing them to verify to give those living donors the choice to change their mind.)
   *   Third, should the Policy have a time limit of how long a living donor be permitted to wait as a bridge donor before being forced to donate "to the list."  All Regional meetings are asked to consider this subsidiary question.
   Some transplant center people in the Region 6 meeting yesterday wanted a limit of 3 months, or six months, or a year maximum.  The reasoning by almost all those wanting a time limited was that, if the time interval became too long, the donor might decide not to donate to anyone or a life change might occur that made it difficult to donate [e.g., a medical condition arose prohibiting donation].  Those who know my feelings about the talk by transplant professionals about living donors "reneging" know that I spoke quite forcefully at the Region 6 meeting yesterday, to set the record straight.  ;)  ]

In the above scenario, please imagine that you had initially answered "no" to wanting to be a bridge donor for whatever reason, and then later the circumstance arose that you now either had to donate "to the list" or be a bridge donor.
QUESTIONS:
  B]   Would your feel the Center was pressuring you if it re-asked, or "verified," your choice about donating "to the list" and not being a bridge donor?
  C]   Would it be OK for the Center NOT to ask you, or would you want to be asked?
  D]   What do you think about the Proposed Policy having a time limit before donors wanting to be bridge donors MUST donate "to the list"?

PLEASE SEND YOUR OPINIONS AND IDEAS TO UNOS ABOUT THESE QUESTIONS, OR ANY OTHER ASPECT OF THIS POLICY.

Thanks,

Bill

[WilliamLFreeman]

Y'all,   Below is my response to UNOS about this proposal.   Bill

I am a living kidney donor, non-directed, and a physician.  I STRONGLY support the proposal, with one qualification and one comment.

QUALIFICATION.  "The potential donor's Transplant Hospital may refuse to allow the potential donor to serve as a bridge donor."  This component was neither explained nor justified.  To me as a non-directed donor, it appears likely unjustifiable.  Why cannot all donors, who pass all medical and psychological criteria to be donors in a chain, be a bridge donor if the chain would otherwise unexpectedly end with them?  The chain will end with a donation to the wait list of the Transplant Hospital that originated the chain.  That should be sufficient to "reward" the originating Transplant Hospital.

COMMENT about specific wording in the proposal.  This proposal, like many authors of articles and commentators, used the word "altruistic" to mean only non-directed donors.  I am a non-directed donor (NDD).  But, *NO THANK YOU* for the attempted compliment.  I, and I believe many NDDs, strongly object to applying that term only to NDDs.  Like, directed donors are not altruistic?  HUH??
   Rather, "directed donors" donate to an identified individual; "non-directed donors to a chain" direct their donation to an anonymous person in a chain; and "non-directed donors to the wait list" [as I was] direct their donation to an anonymous person in the community wait list.  Every donor in a chain other than the initiator are "directed donors to an anonymous person in a chain," much like NDDs donating to a chain.
   Most donors dislike attempts to differentiate among us using alleged "degrees of altruism."  Period.  Most donors simply did what we felt we had to do to help another person.  Period.  Please stop applying "altruistic" to only non-directed donors.