Minority Affairs Committee Update Spring 2014 The Minority Affairs Committee met on March 18, 2014 in Chicago.

Ongoing Committee Initiatives Educational Guidance on Patient Referral to Kidney Transplantation available on OPTN website part of KAS toolkit article in Transplant Pro brochure for providers Kidney Referral Manuscript MAC Review Article Several ongoing committee projects are nearing completion. The committee developed The MAC Educational Guidance on Patient Referral to Kidney Transplantation document to address differences in provider referral practices. Targeting referring physicians, it raises awareness about current kidney transplantation trends and identifying appropriate patients for referral for transplant evaluation. The board approved the guidance document in 2013 and it will be posted on the OPTN website early this spring. The committee is now working on ways to take information from this document and package it for providers, including a provider brochure, an FAQ sheet, a Transplant Pro article and others. Also, the take-home message from this guidance document will be incorporated into KAS educational materials. The committee is almost finished with a manuscript that summarizes the results of the MAC kidney referral survey. All patients suitable for transplantation should be referred appropriately and the survey results highlight the lack of oversight regarding the transplant referral process. Additionally, the MAC drafted a manuscript documenting how the OPTN Minority Affairs Committee (MAC) works with other OPTN committees to impact national kidney transplant allocation policy. The article covers a 20-year span of OPTN policy development. It cites examples of MAC initiatives that led to policy changes, which resulted in significant improvements in transplant outcomes for ethnic minority patients with end-stage renal disease.

New Committee Initiatives A Patient's Guide to Referral to Kidney Transplantation Educational Guidance on Informed Consent for Living Donors Representing Vulnerable Populations The committee is also working on two new committee projects. The MAC and the Patient Affairs Committee (PAC) are working together to translate the content from the guidance document I just mentioned into A Patients Guide to Referral to Kidney Transplantation. This will be a resource for CKD and ESRD patients and will include a downloadable patient brochure and material delivered through social media. The Educational Guidance on Informed Consent for Living Donors Representing Vulnerable Populations project acknowledges that some potential living donors are at greater risk of developing ESRD after donation. These potential donors often represent traditionally underserved and/or vulnerable populations (younger aged, ethnic minorities, est. ) that may be more susceptible to various pressures to donate, despite the risk. They may also be less likely to receive adequate information about future risk. This resource would define a patient’s potential and/or known risk factors as a living donor and offer talking points a transplant professional could use to counsel patients who are considering living donation. This resource will help ensure that the practice of living donation among certain populations remains accessible and safe as a transplant option. The MAC is collaborating with several committees, including Living Donor, Transplant Administrators, Ethics, and Kidney to develop this resource. We are targeting the professionals who initiate the informed consent discussion as part of the living donor evaluation.

Other Updates Review of Liver Redistricting Maps by Ethnicity Update on OPTN Committee Project Collaborations The committee also reviewed other data, including proposed liver redistricting maps by ethnicity resulting from the Liver Committee work to develop a more geographically equitable liver allocation/distribution. The MAC viewed an earlier iteration of the maps and requested to view the data stratified by ethnicity. Overall, the MAC is interested in providing input into each of the measures of equity developed by the organ specific committees, to help inform and guide the proposed redistricting process in its goal of decreasing geographic inequity. Further, as part of its effort to also provide early input into organ allocation policy development, the MAC was provided with an update on the work of the Thoracic and Pediatric Committees.

Questions? Meelie Debroy, MD Committee Chair Meelie.DebRoy@rwjuh.edu Name Region # Representative Email Deanna L. Parker Committee Liaison Deanna.parker@unos.org