KIDNEY DONORS - needed for UNOS meeting - Wed. October 12- Albany NY

[KidneyAngel]

Someone with the National Kidney registry wanted me to ask other kidney donors, if you can attend a UNOS meeting in Albany, NY on Wednesday, October 12, 10:00 AM - 3:00 PM. 

If you are in New York and would like to go there with others, someone with the National Kidney Registry will be meeting at Penn Station that morning.

Please e-mail me if you need more details, as I don't often go on LDO.  Thanks.

Sincerely,

Chaya Lipschutz

E-mail:  KidneyMitzvah@aol.com


P.S. - Can be anyone who donated a kidney can attend -  doesn't have to be someone who donated a kidney to a stranger or through the National Kidney Registry.

[Clark]

Can you provide any more background on why the NKR is asking for more living donors to attend the Region 9 meeting, particularly?  Thanks. http://unos.org/donation/index.php?topic=calendar&event_id=2922:6f799321a030aa76d47edcabf33dbc23

[famoran]

Yes, I would be interested in knowing what tey are needed for.  It may be something I am interested in.

[KidneyAngel]

Finally got info!  There is going to be some sort of policy proposal related to living donors being addressed at this meeting.  So if any kidney donors can attend, that would be great. However, understand it can be a distance for many and also during a weekday - many may not be able to take off from work.  I personaly, unfortunately will not be able to make it.  Would love to have been able to attend.

[Clark]

Dear Chaya,

  Any details?  I don't see anything from the board or committees.  Is there a plan to introduce something new at the Region 9 meeting to be brought to the board?

[WilliamLFreeman]

Clark, Chaya, & y'all,

I do not know NKR's reasons for asking LKDs to attend the Region 9 UNOS Mtg.  But I understand that all UNOS Regional Meetings are discussing & voting on many specific proposals from specific UNOS Committees.  Among them is a set of 3 proposals from the Living Donor Committee.  The following is from the Agenda for UNOS Region 6 meeting:

Living Donor                                                                          Connie Davis, MD, Chair
Proposal to Establish Requirements for the Informed Consent of Living Kidney Donors
This proposal would establish policy requirements for the informed consent of living kidney donors.  This proposal is in response to a directive from the Health Resources and Services Administration (HRSA) and based on recommendations from a Joint Societies Steering Committee composed of representatives of the American Society of Transplantation (AST); the American Society of Transplant Surgeons (ASTS); and the North American Transplant Coordinators Organization (NATCO) to the OPTN/UNOS Living Donor Committee.
Proposal to Establish Minimum Requirements for Living Kidney Donor Follow-UP
This proposal would require transplant programs to report required fields on the Living Donor Follow-up (LDF) form at required post-operative reporting periods (6, 12, and 24 months).  The OPTN currently relies on Living Donor Follow-up (LDF) forms to collect data on the short-term health status of living donors.  Data on living donors who donated in 2006 through 2009 demonstrate that many programs do not report meaningful living donor follow-up information at required reporting intervals. Consequently, to allow for meaningful analyses to objectively study the short-term effects of living donation, the transplant community must collectively improve patient information on the LDF form.  The proposed minimum reporting requirements are based on recommendations from the Joint Society Work Group, which is composed of representatives from the American Society of Transplantation (AST), the American Society of Transplant Surgeons (ASTS), and the North American Transplant Coordinators Organization (NATCO) to the OPTN/UNOS Living Donor Committee.
Proposal to Establish Requirements for the Medical Evaluation of Living Kidney Donors
This proposal would establish policy requirements for the medical evaluation of living kidney donors.  This proposal is in response to a directive from the Health Resources and Services Administration (HRSA), and based on recommendations from a Joint Societies Steering Committee composed of representatives of the American Society of Transplantation (AST); the American Society of Transplant Surgeons (ASTS) and the North American Transplant Coordinators Organization (NATCO) to the Living Donor Committee. 

I believe that the text of the 3 proposals will be available on http://optn.transplant.hrsa.gov after Sep 16.   Any LKD's (and anyone's) comments will be invited as Public Comments -- probably the most effective  procedure to give input.

I am not on expert on other effective procedures for LKDs (or LDs of other organs) to influence development of UNOS policies.  But having attended a few Region 6 meetings since I donated, I am not sure that simply attending is very effective.  Rather, if any LKD wants to comment, I suggest you write your response or proposal, and send it to:  1] the Regional 9 Administrator, &  2] the Region 9 representative for UNOS's Living Donor Committee, and ask that your letter be included in the packet of materials to be distributed to the voting members of Region 9 & to other attendees.  At the discussion of these proposals, the Chair may let you also make a brief oral statement.

Question to Clark (having been on the UNOS Board of Directors recently), what procedure do you recommend?

Bill [a newly-appointed member of the UNOS Living Donor Committee]

[Clark]

Thanks, Bill!  Having the exact words to plug into google did the trick.  You're a fine addition to the LDCom!  Here are some of the germane links on "Proposal to Establish Requirements for the Informed Consent of Living Kidney Donors"

http://optn.transplant.hrsa.gov/downloadables/calendar/R6F11MemoAgenda.pdf (Has the text you quoted, above, but it's in Hawaii!)

http://optn.transplant.hrsa.gov/CommitteeReports/interim_main_PolicyOversightCommittee_8_22_2011_15_41.pdf (Dr. Stuart Sweet's OPTN Policy Oversight Committee meeting notes from their most recent meeting, August 2011, with explicit discussion of these proposals and their status on the path to policy development.)

http://bioethics.georgetown.edu/pcbe/background/crowepaper.html (A 2006 white paper on policy for the President's Council on Bioethics that explicitly addresses standards for living donor informed consent.)

http://www.cs.cmu.edu/~sandholm/ndd%20ethics.AJT10.pdf (An AJT article from 2009, Ethical Considerations for Participation of Nondirected Living Donors in Kidney Exchange Programs, Woodle, et al.)

http://www.organdonor.gov/acotSummaryRec.asp (Note that of 51 recommendations developed over ten years, the very first, #1, is standards of informed consent for living donors.)

[KidneyAngel]

Wow, William, thanks for all this great, detailed info!  Thanks for posting!

Best wishes,

Chaya

[reecelj]

I appreciate the info on the forthcoming proposals from UNOS. I'm not sure the UNOS region meeting is the place for kidney donors/recipients to make their voice heard if they are concerned about these proposals. I attend most of our region meetings in Texas (I'm on a UNOS subcomittee and also attend on behalf of the Texas Transplantation Society) and there is no place on the agenda for public comment; rather, as Bill Freeman suggests, submitting comments on the proposals either online or by email/mail is an effective way to respond.

Laurie Reece
Alliance for Paired Donation

[Clark]

Dear Laurie,

  I, too, wonder at the call by one of the matching organizations to go to this particular regional meeting.  I take the time to attend my region's meetings not so much to provide my input on policy considerations outside my expertise, but to attempt to stay informed about professional views about current events in policy development, as well as to be a visible presence, reminder, and resource for those professionals when they are deliberating on policies impinging on living donor and living donor candidate experiences.  I always identify myself and my relationship to transplantation to the UNOS staff and the OPTN Regional Counselor, who chairs the meeting, before the meeting starts.  While these meetings are mostly a time of intent listening for me, I have often been asked by the chair to share my thoughts on topics I might be expected to have a contribution about.  I have also, rarely, requested the chair recognize me as a member of the general public, and I have always been given the opportunity to speak.

  Even during my tenures on the OPTN Ad Hoc Committee on the Public Solicitation of Organ Donors, The OPTN and UNOS Boards of Directors, the OPTN and UNOS Executive Committee, and the OPTN Kidney Transplantation Committee, I had no official or positional right to speak at a regional meeting any more or less than as a member of the general public.  I urge all donors, donor candidates, recipients, those on the waiting list, family members, members of the press, and the general public to attend regional and national OPTN and UNOS public policy meetings.  They can be inconvenient, tedious, and we may not actually speak out at any given meeting.  Our very presence speaks volumes, modifies behavior by the attendees, and can serve as an effective reminder of our humanity and individuality as policy treating us as an aggregate category is discussed.

  As noted, submitting individual written feedback by means of the public comment mechanism is the best way to make one's thoughts known to the committee and the board of directors.  It will certainly be read and collated by UNOS staff, the chair of the committee, the members of the subcommittee shepherding the proposal, and by some or all of the whole committee and the board as they read and deliberate in advance of their meetings.  It is not the only way.  At that regional meeting will be people who will be representing the region to the committee and the board as these policies advance.  They can be swayed by, impressed by, and bring to those deliberations observations of personal, passionate, articulate advocacy and dissent by individuals taking the time to speak out. 

  Take the time.  Be yourself.  Speak your passion.  You will be seen.  You will be heard.

[Clark]

I'm off to the Region 1 meeting.  I expect the LDCom proposals to be pro forma endorsement votes in this region.  If not, I'll let y'all know what the sticking points seem to be.