Brief to the House of Commons Standing Committee on Health on the Role of the Federal Government in Improving Canada’s Organ and Tissue Donation and Transplantation System (OTDT). Introduction The Kidney Foundation of Canada is pleased to submit this brief to the House of Commons Standing Committee on Health on the role of the federal government in improving Canada’s Organ and Tissue Donation and Transplantation (OTDT) system. Since 2011, the number of deceased donors in Canada has increased steadily. Despite the advances in the number of transplants over the last few years, Canada is not meeting the needs of thousands of Canadians awaiting life-saving transplantation as the number of recipients is still greater than the number of organ donors. There is an urgent need to improve our organ donor and transplantation system to save the lives of this underserved population. The median wait time for a deceased donor kidney transplant is 4 years. However, this varies significantly across regions. People in Manitoba wait the longest for a deceased donor kidney at a median time of 5.7 years. People in Nova Scotia have the shortest wait time of 3 years. In 2016, approximately 290 people died while waiting for a transplant, of which 85 were waiting for a kidney. Dialysis has an annual mortality rate of nearly 20%. Just 44% of people on dialysis are alive after five-years. Increasing transplantation rates is a matter of life and death for people with kidney failure. The Burden of Kidney Failure There are over 4,500 Canadians waiting for an organ transplant, more than 75% of whom are waiting for a kidney. There are far more people waiting for transplants than just those on the waitlist. The waitlist is just the tip of the iceberg. There are nearly 22,000 Canadians whose kidneys have failed who require dialysis to live (excluding Quebec)i. There were more than 5,500 new cases of kidney failure in 2016. The number of new cases increased by 26% in the 10 years prior. Kidney transplantation is widely considered the best treatment for people with kidney failure. A transplant enables people who would otherwise be on dialysis at least 3 times a week for 4-5 hours at a time, to live a relatively normal, healthy and productive life. Gwen, a nurse and mother of two, describes dialysis as more like life support than living. She describes kidney disease as having eroded her life – robbing her of her profession, her energy, and her ability to think clearly, until all she had left was a life she describes as “tired, painful, small, and isolated.” After her kidney transplant, she got her life back; a life filled with creativity, laughter, and meaningful work. Not only does a transplant have better health outcomes and improved quality of life, but it is also a less costly option for the health care system than dialysis. The total annual cost of dialysis ranges from $56,000 to $107,000 per patient. The cost of a transplant is $66,000 in the first year, then $23,000 in subsequent years. Therefore, the healthcare system annually saves up to $84,000 per patient transplantedii. However, not everyone who would best be treated with a transplant is able to get one. The need for kidneys continues to exceed the supply of donor kidneys. Although 1,731 kidney transplants were performed in 2016iii, there are nearly twice as many people still waiting for a kidney. While the preferred treatment is kidney transplantation, the majority of patients are treated with dialysis therapy, due to both being short of the number of organs to meet the needs of Canadians waiting as well as co-existing medical conditions contraindicating transplantation for many patients. The increasing numbers of people living with kidney failure on dialysis has significant public health implications given the co-morbidities and striking reduction in quality of life. In 2014, kidney disease was the 11th leading cause of death in Canadaiv with an annual mortality of nearly 20%v. Page 2 of 8 Donation Rates Deceased donation rates have experienced an increase year over year since 2010 (Appendix A), with much of the credit going to the implementation of Donation after Circulatory Death (DCD).vi These increases may also be attributed to the collective efforts of the provincial organ donor organizations, transplant programs, and OTDT researchers and intensive care units in Canadavii. Despite this increase, there is significant regional variation in deceased donation rates across the country which highlights the inequality in accessing transplants (Appendix B). Unlike deceased donation, the rates of living donation have been relatively flat over the last few years (Appendix C). Forty-two percent of kidney transplants are made possible by living donors, who would otherwise be on the deceased organ donor waiting listviii. Living donation rates also vary more greatly between regions across Canada (Appendix D). The Kidney Paired Donation and the Highly Sensitized Patient programs have led to more than 1,000 kidney transplants that may otherwise have not occurred. These programs, as well as the implementation of Donation after Circulatory Death, are examples of the innovative, inter-provincial systems-based approaches we need to improve Canada’s transplant rates. Room for Improvement through System Changes Improvements are needed to increase transplant rates and minimize regional variation in rates. As a country, we can’t continue to miss potential donors and cause preventable harm to those waiting for a life-saving transplant. Systemic changes and innovative approaches to increase transplant rates are needed. The coordination and implementation of such measures is an area where the federal government has a role to play in improving Canada’s OTDT system. Evidence suggests that there is room to improve on the number of deceased organ donors in Canada. A report on the deceased organ donor potential in Canada released by the Canadian Institute for Health Information (CIHI) in 2014 showed a conversion rate of 1 in 6 potential donors in a review of Canadian hospital records.ix Conversion rates are calculated by dividing the number of actual donors by the number of potential (or eligible) donors observed in Canadian hospitals. By increasing the conversion rate, there can be more transplants performed for those needing organs. In an environment where the supply of donor organs is low and demands are high, missed opportunities for donation are literally a matter of life and death. Donor organs are rare and precious and every opportunity needs to be pursued to ensure that no potential donation is missed or lost, because it also means lost lives of those waiting for transplant. Currently, there is a lack of data concerning missed donor opportunities in Canada, which stems from inconsistency in the frequency, methods, and scope of data collection between jurisdictions. Furthermore, this data is not centrally accessible to patients on the waitlist, researchers, clinicians, administrators, or policy makers. Current Canadian approaches to measurement and reporting of potential donor identification and referral are fragmented and lack consistency, timeliness and accessibility of informationx. Page 3 of 8 Recommendations The Kidney Foundation of Canada recommends that the federal government take steps to improve Canada’s Organ and Tissue Donation and Transplantation system and save more lives by: • Implementing a national strategy and oversight to ensure every potential deceased donor is identified and that every person awaiting transplant has equitable access to organ transplantation across the country. This includes implementation and monitoring of best practices, public and professional education, and the development and coordination of an advanced inter-provincial organ sharing and data monitoring system. • Promoting living donation though public awareness and by reducing the barriers to living donation for the donor and recipient. This includes: o Practices to reduce the amount of time it takes for a potential donor to be screened and for the surgery to take place. o Improved financial support for living donors and continued support of living donation programs such as Kidney Paired Donation program. • Investing in donation/transplantation research to improve the quality and quantity of organ transplants and the improve outcomes for people receiving them. The Kidney Foundation of Canada’s Role in Increasing Organ Donation and Transplant Rates The Kidney Foundation of Canada is working with healthcare, industry and government representatives to improve organ donation rates. The Foundation encourages Canadians to make a positive decision regarding organ donation and to discuss their wishes with their family. The Kidney Foundation of Canada will continue to encourage Canadians to register their intent-to-donate and to inform their loved ones of their wish to donate after death. In July 2006, a three-year provincial pilot program–the Living Organ Donor Expense Reimbursement program (LODER)–was launched in British Columbia by The Kidney Foundation’s B.C. Branch in partnership with the B.C. Transplant Society. This program aimed to remove financial barriers to living donation by providing financial assistance to living kidney and liver donors. The Foundation has successfully worked with provincial governments to expand the program to all provinces. The Kidney Foundation of Canada has also made significant research investments in transplantation research, funding over $4 million in research support in the last 5 years. In addition, The Foundation is a proud partner of the Canadian National Transplant Research Program (CNTRP), a national research network designed to increase organ and tissue donation in Canada and enhance the survival and quality of life of Canadians living with a transplant. KFOC has supported the program for the past five years and has renewed the commitment for another 3 years. In addition, KFOC is now a formal knowledge user of the Network.