Regional Discussion: Living Donation

National Trends Deceased donors recovered increased by 9.8%, and deceased donor organs transplanted increased by 10.7% from 2015 increases in ECD, DCD, SCD donors DCD donors now comprise 17% of deceased donors overall (ranges from 10%-25% by region) 0.4% decrease in living donation from 2015-2016.

Benefits of Living Donor Kidney Transplantation Shorter waiting time (usually 1-2 months); permits preemptive transplantation to avoid dialysis Higher quality kidney (healthy donor, short ischemia time), which results in higher success rates and improved graft longevity Scheduled event, can plan accordingly, can be performed during normal work day by rested team and fully prepared donor and recipient Psychological benefits to donor and recipient A living donor kidney transplant allows the deceased donor kidney that would be needed for this recipient to be given to another individual in need of a transplant, so in essence two people are removed from the kidney waiting list

Expected remaining lifetime for recipients of a kidney transplant compared with patients on dialysis (across sexes and various races)a Recipients of a Kidney Transplant Have a Longer Life Expectancy Than Patients Who Remain on Dialysis Recipients of a Kidney Transplant Have a Longer Life Expectancy Than Patients Who Remain on Dialysis This slide shows the years of expected remaining lifetime for patients on dialysis (orange bars) compared with recipients of a kidney transplant (blue bars) in 5-year age increments Based on estimates from 2012, recipients of a kidney transplant, regardless of age, can expect to have about 2.5 times more remaining years of life compared to patients on dialysis Similar trends were observed across genders and various races Reference: United States Renal Data System (USRDS). 2014 ADR chapters. http://www.usrds.org/2014/view/default.aspx. Accessed February 11, 2016. Based on estimates from 2012, recipients of a kidney transplant had about 2.5 times more remaining years of life than patients on dialysis a Data are from the United States Renal Data System (USRDS) 2014 Annual Data Report; estimates are from 2012. USRDS. 2014 ADR chapters. http://www.usrds.org/2014/view/default.aspx. Accessed February 11, 2016.

Death rate of patients on dialysis at 5 years compared with patients with selected solid tumor cancers (all stages)1,2,a Patients With Certain Cancers Have a Better Chance of Surviving 5 Years After Diagnosis Than Patients Starting on Dialysis Patients With Certain Cancers Have a Better Chance of Surviving 5 Years After Diagnosis Than Patients Starting on Dialysis This slide compares the number of people on dialysis who died within 5 years of starting dialysis with the 5-year death rate at diagnosis for patients with selected solid tumor cancers, across all stages1,2 Approximately 60 out of every 100 patients who began dialysis in 2007 died within 5 years of starting dialysis1 This was higher than the 5-year death rate for people who were diagnosed with any stage of2: Prostate cancer (1 out of every 100 patients) Melanoma of the skin (9 out of every 100) Breast cancer in females (11 out of every 100) Kidney cancer (28 out of every 100) Colon and rectal cancers (35 out of every 100) But was lower than the 5-year death rate for people who were diagnosed with any stage of2: Stomach cancer (72 out of every 100) Lung cancer (83 out of every 100) Liver cancer (83 out of every 100) Pancreatic cancer (93 out of every 100) References: USRDS. 2014 ADR chapters. http://www.usrds.org/2014/view/default.aspx. Accessed February 11, 2016. American Cancer Society (ACS). Cancer facts & figures 2015. http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc-044552.pdf. Accessed March 1, 2016. a Dialysis mortality data are taken from the USRDS 2014 Annual Data Report; cancer mortality data are from the American Cancer Society (ACS) Cancer Facts & Figures 2015. 1. USRDS. 2014 ADR chapters. http://www.usrds.org/2014/view/default.aspx. Accessed February 11, 2016. 2. ACS. Cancer facts & figures 2015. http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc-044552.pdf. Accessed March 1, 2016.

A Kidney Transplant From a Living Donor Results in Better Long-term Outcomes Than a Transplant From a Deceased Donor or Dialysis Patient survival rates Donor kidney survival rates A Kidney Transplant From a Living Donor Results in Better Long-term Outcomes Than a Transplant From a Deceased Donor or Dialysis The graph on the left side compares 1-, 5-, and 10-year survival rates for patients on dialysis, recipients of a deceased donor kidney, and recipients of a living donor kidney Based on 1-year data from 2011, 5-year data from 2007, and 10-year data from 2002, patients on dialysis (orange bars) had the lowest 1-, 5-, and 10-year survival rates—78.8%, 40.5%, and 18.6%, respectively Recipients of kidneys from living donors had the highest long-term survival rates. Survival rates at 5 and 10 years were 84.8% and 52.1%, respectively, for recipients of a kidney from a living donor The graph on the right side compares the 1-, 5-, and 10-year survival rates for kidneys transplanted from deceased donors and living donors Based on 1-year data from 2011, 5-year data from 2007, and 10-year data from 2002, kidneys transplanted from living donors had higher long-term (5- and 10-year posttransplant) survival rates compared with kidneys transplanted from deceased donors 5-year survival rates of kidneys from living donors (blue bars) and deceased donors (gray bars) were 82.9% and 70.5%, respectively 10-year survival rates of kidneys from living donors (blue bars) and deceased donors (gray bars) were 58.6% and 43.4%, respectively Reference: USRDS. 2014 ADR chapters. http://www.usrds.org/2014/view/default.aspx. Accessed February 11, 2016. a Data are from the USRDS 2014 Annual Data Report; 1-year data are from 2011, 5-year data are from 2007, and 10-year data are from 2002. USRDS. 2014 ADR chapters. http://www.usrds.org/2014/view/default.aspx. Accessed February 11, 2016.

Waiting List Additions 2007-2016 U.S.

Waiting List Registrations 2007-2016 Region 9

Deceased and Living Donors 2007-2016 U.S. 63% DD/37% LD

Deceased and Living Donors 2007-2016 Region 9 55%LD/45%DD

Deceased and Living Donors 2007-2016 U.S. Region 9 does well in LD volume Living donation appears to be more prevalent in some regions than others. 40% or more of all donors are living donors in Region 1, 7, 9, and 10. While in Regions 3 and 11, less than 30% of donors are living donors.

Kidney Transplants 2007-2016 Region 9 Even in a high performing region their are programs that perform higher % LDs

Deceased and Living Donor Transplants 2007-2016 Region 9

Region 9 Living Donors, 2014-2016 2014:552 2015: 542 2016:543 LD kidney: 516 LD kidney: 488 LD kidney: 500 LD liver: 36 LD liver: 54 LD liver: 43

What can we do as a Region to Maximize LD Potential? Education Efficiency Removal of Disincentives Collaborative Efforts LaPointe Rudow D, et al. Consensus conference on best practices in live kidney donation: recommendations to optimize education, access, and care. American Journal Transplantation. 2015 Apr; 5(4): 5(4):914-22.

Education Public Education in needed Must also focus on candidate/ family and potential donors Various programs available, House Calls, Donor Champion, Kidney Coaches UNOS Kidney Transplant Learning Center to be launched late 2017

How Do We Help Patients Find a Living Donor? In January, the National Kidney Foundation (NKF) launched The Big Ask: The Big Give: A free, educational campaign that teaches kidney patients how to ask their friends and loved ones to consider living organ donation. It also includes extensive information for those considering donation. Includes a website at www.kidney.org/livingdonation, downloadable publications, peer support, and the NKF Cares Help Line. NKF is also developing ½ day workshops for patients, families, potential donors. Interactive training workshops on “how to ask” and find potential living donors Workshops are being pilot tested now through Mt. Sinai, Montefiore and Hackensack. Mt. Sinai partnered closely with NKF to develop the curriculum and training materials. For more information, contact Jennifer Martin at NKF: jenniferm@kidney.org

Efficiency Individual center commitment of staffing and resources to live donation

Financial Assistance

Qualifying Expenses: Travel, lodging, meals & incidental expenses 3 trips for the donor 2 trips for the support person Up to $6,000 Up to 2 years after donor surgery Transportation, lodging, and subsistence expenses Federal per diem rate for meals (transplant center city) Hotel up to150% federal per diem rate Exclude Merchant Codes Not Related to Travel Add funding as needed, generally one week before travel

% U.S. Living Donors With NLDAC Support Calendar Year-OPTN Data 1/23/17-NLDAC Data 1/23/17

Donor Travel: Annual Expense NLDAC Database August 31, 2016 FY September 1 – August 31

Laura and John Arnold Foundation Randomized Controlled Trial to Evaluate the Effect of Lost Wage Reimbursement to Potential Kidney Donors on Living Donation Rates (The Donor Lost Wages Study) Grant awarded to the American Society of Transplant Surgeons in partnership with Arbor Research Collaborative for Health with additional researchers from University of Arizona, The Wharton School of the University of Pennsylvania and the Mayo Clinic of Arizona Began in 2017 and is projected to run through 2018 Five Transplant Centers will participate in the trial Transplant recipients will be randomly offered or not offered wage reimbursement for their donors

Payers to Cover Travel for LDs United Health care Will Reimburse Kidney Donors’ Travel Expenses, Expanding Life-Saving Access to Kidney Transplants BOSTON (June 13, 2016) – United Health care will pay travel expenses for kidney transplant donors, addressing one of the major barriers to living organ donation. The announcement was made yesterday at the 2016 American Transplant Congress in Boston by Jon Friedman, M.D., chief medical officer for Optum’s Complex Medical Conditions programs. Optum is the health services company that manages transplant services for United Health care. Both companies are collaborating with the American Society of Transplantation (AST) and American Society of Transplant Surgeons (ASTS), which hosted the congress, to improve outcomes, reduce costs and enhance the experience of donors and recipients.

LD Financial Assistance They cover Essential bills, up to 3. Sometimes can do 2 months worth. They cap at up to $1,000 per living donor and $400 per transplant recipient. Do not have to be a citizen or even legal. Just have to be working. 

Steps to Increase Access to Live Donation in NYS Living Donor Work Group New York State Live Donor Support Act ( A5475/S2498) Reimburse lost wages travel and other expenses to live donors The program will pay LD expenses for LDs who are NYS residents donating directly or through KPD to a NYS resident recipient The amount reimbursed may be limited to an annual salary of 125,000 or 14,0000 for a single donor. Time off will be approves for 4 weeks and 8 with exceptions Creates education materials for dialysis providers and nephrologists to distribute to their transplant-eligible patients Insurance clause for Medicaid insured donors. Bipartisan Approval: 44 sponsors in the Assembly and 22 members in the Senate Bill has been included in Senate Budget Need strong push to get the Assembly and Governor to agree to it in the budget negotiations (which should conclude April 1st).

Groups Endorsing Model Legislation

Discussion Much collaborative activity has occurred around live donation in Region 9 Is it time for an NYCKT? Financial resources Designated Staff Collaboration on Education and Advocacy LD initiatives Next steps?