Today we have a guest post by Jane Zill, LICSW on OPTN’s proposed policies now up for public comment:
The Board of the OPTN will vote on new allocation principles for deceased donor kidneys in June. These allocation principles will definitely impact living organ donors. I am very concerned about this and believe that we should reach out to OPTN Board members immediately and to the Kidney Committee that sponsored this proposal. We don’t have much information about living donors who develop end stage renal disease. A few years ago it was thought to be only 56 but now a new tally is 324*. Because systematic data collection has never been required we do not have an accurate count or an understanding of the factors that led to organ failure in these people.
Also, public comment closes in June on a proposal for Independent Donor Advocacy. While the proposal represents hard work and good faith of the members of the Living Donor Committee, it falls far short of what is considered to be best practice. I believe that the wisest and safest route to go would be to ask HRSA to reverse its 2006 decision that gave the OPTN authority (thus the transplant surgical community) to make policy about living organ donation. The transplant surgical community has a conflict of interest regarding living donors that should preclude them from the ability to make their own policy about how they will care for living donors. Since 2006 their efforts have been very unproductive, while KPD [kidney paired donation] that requires the use of living donors, is gaining traction.
We need a National Center for the Independent Care and Advocacy for Living Organ Donors, which is totally apart from the purview of the OPTN or the transplant community. Public comment closes on the proposal about Independent Donor Advocacy in June.
PLEASE ADDRESS THESE VERY IMPORTANT ISSUE THROUGH THE PUBLIC COMMENT PROCESS OR BY WRITING TO THE KIDNEY COMMITTEE OF MEMBERS OF THE BOARD. IF ANY WOULD LIKE HELP WRITING THEIR COMMENT, PLEASE LET ME KNOW. IF ANYONE WOULD LIKE TO COLLABORATE TO CREATE A DRAFT DOCUMENT(S) FOR OTHERS TO USE TO MAKE PUBLIC COMMENT, PLEASE LET ME KNOW.
Also, you can feel free to contact Jane directly, leave a comment here or email me if you’d like more information or to receive a template to submit to OPTN.