National Foundation for Transplants Michelle Gilchrist, President & CEO National Foundation for Transplants

Background Founded in 1983 in Memphis, TN Serves all ages, all organ types Mission: To save lives and ensure everyone has equal access to transplantation Removes financial barriers which delay or prevent transplantation

on the OPTN waiting list waiting for a kidney, or liver 116K 95% Americans have kidney failure. Of these, 468,000 are on dialysis 116K 95% 660K (Sources: OPTN and The National Institute of Diabetes, Digestive and Kidney Diseases)

Patient Challenges 1 2 3 4 Fear of losing SSI benefits $16,920 not retirement age, $44,880 retirement age 2 Concern of depleting retirement, savings, and other personal assets 3 Anxiety over living donor not donating due to lost wages 4 Reduced household income - increased medical debt

Financial Realities of Transplantation Am I Ready to Reach Out for Help?

TRANSPLANT COSTS IN U.S. Transplant Type Estimated Billed Charges 20% Co-Pay Heart $1,382,400 $276,480 Lung – Single $861,700 $172,340 Liver $812,500 $162,500 Kidney $414,800 $82,960 Pancreas $347,000 $69,400 (Source: Milliman Research Report, 2017 U.S. Organ and Tissue Transplant Cost Estimates and Discussion)

MEDICATION COSTS Organ Type U.S. Average Billed Charges Heart $34,500 Lung – Single $39,900 Liver $30,800 Kidney $28,600 Pancreas $22,100 (Source: Milliman Research Report, 2017 U.S. Organ and Tissue Transplant Cost Estimates and Discussion)

WAIT TIME BY TRANSPLANT Transplant Type Average Wait Time (# of Days) Heart 191 Lungs (single and double) 185 Liver 239 Kidney 679 Pancreas after Kidney 532 Pancreas alone 281 Kidney-Pancreas 394 (Source: Milliman Research Report, 2017 U.S. Organ and Tissue Transplant Cost Estimates and Discussion)

SURVIVAL RATE Transplant Type 1-Year 3-Year 5-Year Heart 91% 85% 78% Lungs (single and double) 87% 69% 55% Liver 83% 75% Kidney 97% 93% 86% Pancreas 92% 88% 80% Kidney-Pancreas 98% 95% (Source: Milliman Research Report, 2017 U.S. Organ and Tissue Transplant Cost Estimates and Discussion)

Solution for Patients

NFT vs Go Fund Me NFT Go Fund Me Service Fee 3% Service Fee 7.9% Donations are Tax-Deductible Gifts Cannot be Tax Deducted No Gift Tax Donor Pays Gift Tax after $14,000 No Affect on SSI Benefit Retention Jeopardizes SSI Benefits Personal Fundraising Consultant Self-Driven Provides Campaign Materials and Funding Plan No Campaign Materials or Funding Plan Press Release Development & Distribution No Press Release Support

Patient Services Co-pay and medical expenses Prescription Assistance for Transplant Medication and Maintenance Meds Travel, food and lodging (patient & caregiver) Mortgage/rent and Utility Assistance Post-transplant Psychosocial Therapy

Living Donor Program Unpaid Medical Expenses, or medical expenses resulting from complications Income Assistance, not income replacement (based on financial need) Transplant Related Prescription Assistance Travel, food and lodging

Verify Transplant Need Process Complete Application Verify Transplant Need Develop Funding Plan Solicit 4 1 2 3 Pay Incurred Expenses Over the next several slides, we will look at issues within the organ transplant system, identify key financial factors in order to quantify the areas with greatest impact, develop solution that will lead towards action, provide an update on community-based participatory collaborations in progress, and propose next steps 5

Thank You! www.transplants.org