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Living Donation Discussion and News => Living Donation Forum => Topic started by: Clark on March 16, 2012, 06:31:18 PM

Title: Due 6/15! Proposal to Clarify Priority Status for Prior Living Organ Donors
Post by: Clark on March 16, 2012, 06:31:18 PM
http://optn.transplant.hrsa.gov/PublicComment/pubcommentPropSub_301.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=325


Proposal to Clarify Priority Status for Prior Living Organ Donors Who Later Require a Kidney Transplant

Affected/Proposed Policy: 3.5.11.6 (Donation Status) and 12.9.3 (Priority on the Waitlist)
Kidney Transplantation Committee
This proposal seeks to clarify the allocation priority assigned to prior living organ donors who later require a kidney transplant. Current policy is unclear as to whether the priority is to be assigned in the event that a prior living donor requires a second or third transplant. This proposal would clarify that the priority is to be assigned with each kidney transplant registration for prior living organ donors.
Affected Groups
Living Donors
Transplant Social Workers Organ Candidates
Number of Potential Candidates Affected
This proposal will affect a small number of candidates. Since 1996, there have been 33 prior living organ donors listed for more than one kidney transplant.
Compliance with OPTN Key Goals and Final Rule
This proposal will promote living donor safety by clarifying that prior living donors who experience kidney failure will receive additional priority with each kidney registration.
Title: Re: Proposal to Clarify Priority Status for Prior Living Organ Donors Who Later Requ
Post by: WilliamLFreeman on May 06, 2012, 12:16:40 AM
Background:  In current policy, people who had donated an organ and now need a kidney transplant are given 4 additional points of priority to their existing priority score.  The current policy is unclear if the same person is given additional points if/when the person needs a second or third kidney transplant.  This proposal says that they receive 4 additional points each time they need a kidney transplant -- first, second, third, etc.  The policy applies to people who have donated a kidney, part of a liver, lung, etc.  It is quite rare for a living donor to need a kidney transplant.

Possible issues special for Living Donors:

The Proposal is straightforward; I do not see a downside.  (My thought:  An issue peripheral to this Proposal, but that is much more relevant and frequent for living donors, is short-, medium- and long-term medical care and future insurance coverage after donating, particularly if Obamacare is overturned.  But that is not "on the table" at this time.)

PLEASE SEND YOUR OPINIONS AND IDEAS TO UNOS ABOUT THIS POLICY.

Thanks,

Bill
Title: Re: Proposal to Clarify Priority Status for Prior Living Organ Donors Who Later Requ
Post by: Donna Luebke on May 08, 2012, 02:19:01 PM
Not clear or straightforward:  While donors may get this 4 point allocation priority, who then pays for the transplant? for the immunosuppression medications?  We know from the literature that approx 3000 kidneys per year fail when those who have already been transplanted cannot afford their medications.  If have Medicare, Medicare will pay 80% for 36 months but the person must still pay 20%.  It is very costly to both get a transplant and sustain it.  More costly if need retransplant which could include desensitization. 

According to the 2011 Milliman report, a kidney transplant costs approx $262,000.  What part of this will the recipient's insurance pay?  or will Medicare pay?  Since I have private insurance, Medicare would not even step up to be primary for 30 months--and would require I pay a Medicare premium whether for primary or secondary payor. 

Priority:  educating potential donors what this 4 point allocation priority means including if the organ offer is from an SCD (standard criteria donor), ECD (expanded criteria donor) or DCD (donation after cardiac death donor).  All of this comes under informed consent.   Donors who develop ESRD do not move automatically to the 'top of the list.'  Children and six antigen matches are priority. 

Agree this is rather straightforward that a previous donor only gets one 'get out of jail' card.  What is not straightforward is that there are many reasons why a recipient transplant graft fails and why may need relisted (operator error, clot, quality of match, age of graft, etc.) 

Thanks Clark and Bill.  Still much work to be done when comes to risk disclosure and consent. 
Title: Re: Proposal to Clarify Priority Status for Prior Living Organ Donors Who Later Requ
Post by: donor99 on May 22, 2012, 06:44:57 AM
Living donors do come before children, but below zero mismatches and renal extra renal (liver kidney, heart kidney) per UNOS the typical waiting time for a prior living donor who is not sensitized is 3-6 months.
Title: Re: Due 6/15! Proposal to Clarify Priority Status for Prior Living Organ Donors
Post by: WilliamLFreeman on June 17, 2012, 06:50:39 PM
Y'all,   Below is my response to UNOS about this proposal.   Bill

I am a living kidney donor and a physician.  I am doing well after donation and, given my age, I am unlikely to develop ESRD before I die from diseases common in old age.  I therefore have little personal stake in this proposal.

I support the proposal.  I thank the Living Donor Committee and Kidney Transplantation Committee for this proposal.

My support is, however, qualified.  It is unclear how well this proposal is coordinated with another component in UNOS policy -- the proposed KPD Policy.
   How do these 4 additional points for living organ donors (LODs) fit in with the proposed OPTN KPD Policy?  In KPD, every match receives 100 base points, plus additional points awarded for special categories.  The points for four categories range from 100 to 200 points, and for three other categories from 25 to 75 points.  In the great majority of circumstances, the 4 LOD-points will be swamped by the proposed KPD points, meaning that LODs will have only an insignificant priority regarding KPD matches.  I did not see how either proposal coordinated with the other proposal.

It would be helpful for UNOS to state the nature and limits of this priority in an easily-findable webpage.  For instance.
  *   What other points are allocated, for what reasons?
  *   State if this proposal puts LODs ahead of the children's priorities.
  *   State if this proposal leaves LODs behind any other category.
PLEASE NOTE: I am expressing *no* opinion about the final priorities resulting from this proposal.  Rather, I simply am requesting easily availability, clarity, and transparency about which situation has priority.