Minority Affairs Committee Report

1. Minority Affairs Committee Report OPTN/UNOS Board of Directors Meeting June 25-26, 2012 Silas P. Norman, MD Chairman

2. Minority Affairs Committee Update • Educational Guidelines on Patient Referral to Kidney Transplantation • Ongoing CPRA Analysis • Minority Donor Conversion Data Review • New Proposed MAC Projects

3. Educational Guidelines on Patient Referral to Kidney Transplantation • MAC - To increase access and transplants among minority populations • NOTA – Increase access, equitable allocation • OPTN Strategic Goal – Increase the number of transplants • Significant challenge is timely access to kidney transplant referrals

4. Background • The majority of patients have seen a nephrologist < 12 months at the time they initiate dialysis • Many patients spend significant time on dialysis prior to referral for kidney transplant evaluation • Minority populations tend to be referred later for kidney transplant evaluation • The result is few pre-emptive transplants and excess patient mortality

5. Access to Evaluation • CKD and ESRD patients need increased access to kidney transplant evaluation • The lack of timely evaluations directly impacts the ultimate number of transplants • We assume that with the proper information and incentives, providers and patients would improve timely referrals

6. What Is the Need? Provider Education Providers must: • understand the allocation system well enough to care for patients. • understand what constitutes timely referral. • understand the need for timely referral. • understand barriers to timely referral. • be able to deliver/refer patients to accurate transplant information.

7. What Is the Need? Patient Education Patients must: • understand the allocation system well enough to advocate for themselves. • understand what constitutes timely referral. • understand the need for timely referral. • understand barriers to timely referral. • be able to locate sources of accurate transplant information.

8. Key Points • The default pathway for CKD and ESRD patients should be transplant referral • Preemptive transplant is the goal and can only be achieved with “early” referral • Education about transplant has to begin long before ESRD (Stage 3-4 CKD) to be most effective

9. ATC • Abstracts presented at recent American Transplant Congress meeting highlighted: • Impact of early transplant education on outcomes • Patients presented to transplant evaluation without prior education were less likely to be transplanted • Impact of external structural environment on access • Poverty, geography, etc. impact on referral and transplant

10. Incentives • Improved patient outcomes • Minimizing extra work • CKD Stage 4 education reimbursement

11. Draft Guidelines • 12+ months in the making • Subcommittee of the MAC • Subsequently reviewed by full committee • Expanded review in progress • Guidelines seek to educate providers about allocation, barriers and consequences of late referral • Guidelines provide direction for timely education and referral

12. Expanded (Joint) Subcommittee • Representatives from professional transplant partner organizations • AST • NKF/KDOQUI • STSW • OPTN Committees • Kidney • Patient Affairs • Living Donor • Transplant Administrators • Joint MAC/Organizational Representatives • MOTTEP • ASN • AMAT

13. Expanded (Joint) Subcommittee • Review of draft document • Major missing topic areas • Major errors • Dissemination plan • Identifying target groups/stakeholder groups • Thinking about the best way to reach groups • Minimizing duplication of efforts of other committees/groups

14. Guidelines Document Sections • Purpose • Background • Kidney Function • Interest in Transplant • Co-morbid Conditions • Medical Non-Adherence • Substance Abuse • Cognitive Impairment • Financial Status • Transplant Evaluation • Living Kidney Donation • Multiple Wait Listing • Barriers to Transplantation • Transplant Education • FAQ’s • Information Resources • References

15. Timeline • Feedback from participants: • Consensus building within their constituent groups • Key contacts • Media suggestions • Educational strategies • Input/review to be solicited from: • HRSA/CMS • KDOQUI/KDIGO Board • Internal UNOS staff

16. Future Activities • Dissemination of the Guidelines • Development of Implementation Strategy • Development of Educational Initiatives • Development of Patient Friendly Version of Guidelines

17. Evaluation of Calculated PRA (CPRA) Policy for Allocation of Deceased Donor Kidneys: Transplant Rates by Ethnicity and Sensitization Level

18. Adult Kidney Registrations as of 2/10/12 • 38% White, 34% Black, 18% Hispanic, 7% Asian and 2% other ethnicities • 16% -- CPRA value of 80-100% • 9.8% waiting with current CPRA ≥ 98% • 43% were Black • 35% White • 14% Hispanic • 6% Asian • 2% other ethnicities

19. TX Rate Changes Post Policy Implementation • Significant decrease for non-sensitized (CPRA 0%) and low sensitized (CPRA 1-20%) White, Black, and Hispanic candidates • Significant increase for White, Black, and Asian moderately sensitized (CPRA 21-79%) candidates • No significant change among American Indian/Alaska Native, Native Hawaiian/Other Pacific Islander, or Multiracial candidates, regardless of sensitization level

20. Changes in TX Rates • Significant increase for highly sensitized (CPRA 80-100%) White, Black, and Hispanic candidates • Significant increase among White, Black, and Hispanic candidates with a CPRA of 80-97%, but decrease (although not significant) in transplant rates for those with CPRA of 98-100% • Also true for Asian candidates, although the decrease in transplant rates for those candidates with CPRA ≥ 98% was significant

21. Eligible Donor Conversion RatesBy Region and Ethnicity

22. Eligible Donor Conversion Rates, 2/1/08-11/30/11by Year: All Regions

23. Eligible Donor Conversion Rates, 2/1/08-11/30/11by Donor Ethnicity: All Regions

24. Eligible Donor Conversion Rates 2/1/08-11/30/11By Year and Ethnicity: All Regions

25. Results • Across all regions and donor ethnicities the donor conversion rate was 70.1% • It ranged from 67% in 2008 to 73% in 2011 • Overall conversion rate was the highest among donors of multiracial ethnicity (85%), followed by: • White donors (78%) • Hispanics (67%) • Blacks (55%) • Asians (48%) • Native Hawaiians/other Pacific Islanders (46%) • American Indians/Alaska Natives (40%)

26. Results • Within each region, eligible donor conversion rates varied among donor ethnic groups. • Regions 4 and 6 seemed to have increasing conversion rates across different donor ethnic groups during 2008-2011.

27. New Proposed Committee Projects • Survey on Referral to Heart Transplantation • Study of Best Practices in Minority Donor Conversions

28. Special Thanks Deanna L. Parker, MPA Wida Cherikh, Ph.D