Organ Donation in Canada: Where do we stand?
Strategies for the safe, efficient and ethical procurement of organs for transplantation has been a long-debated issue internationally, and in Canada, the demand for organ donations continues to be greater than the supply. The first national strategy to increase the national donor rate in Canada came about in 1999 in response to a report issued by the House of Commons Standing Committee on Health.1 As a part of this proposed strategy, the Canadian Council for Donation and Transplantation (CCDT) was established in 2001. The main focus of the CCDT was to conduct consultations on standards and clinical practice guidelines for organ donation and transplantation, as well as to make recommendations on issues linked to the subject such as cardiac death and immunological risk following transplant. In 2007, the responsibilities of the CCDT were placed in the hands of the Canadian Blood Services (in all provinces except for Quebec).1 Since then, some progress has been made in Canada’s organ donation and transplant system, mainly through the establishment of the Canadian Transplant Registry and the expansion of donor criteria;2 however, each year thousands of patients – many of them with rare, life-threatening diseases – are still left waiting for transplants.3
Canada has a low deceased organ donor rate, especially compared with many developed countries including the United States, France and Spain.4 This discrepancy may not lie in poor donor recruitment or a lack of altruism, but rather social and demographic factors which set these countries apart. In addition, Canada only counts the number of actual utilized donors toward the organ donor rate; whereas some other countries include potential donors in the calculation of their donor rates (i.e. donors that are identified, but do not necessarily result in the transplantation of an organ).1 Spain has an aging population and a higher mortality rate due to stroke, and as a result, Spain has a greater proportion of potential donors; although, organs may not be transplanted or even procured from these individuals because they are usually considered too old to do so. The United States and Spain both have greater mortality rates due to motor vehicle accidents than Canada does which can also contribute to an increased deceased donor rate.1 Countries with highly successful organ donation and transplantation programs, such as the United Kingdom, Italy, Spain and Australia, have also implemented donation physicians – doctors who are responsible for donation leadership, education, consultation, clinical support, and performance and quality improvements in organ donation.3
““Individuals with rare diseases rely on organ donations, and in many cases, transplantation is the only viable cure for their disease.””
Individuals with rare diseases rely on organ donations, and in many cases, transplantation is the only viable cure for their disease. Take for example cystic fibrosis patients with progressive disease. The only definitive treatment option for these individuals is a double-lung, heart-lung or liver transplant.5 Similarly, kidney transplantation is the best therapy for end-stage kidney disease, and a transplant can more than double a patient’s life expectancy when compared with dialysis treatment. Not only is kidney transplantation beneficial for patients, it is also the most cost-effective way to treat patients with end-stage kidney disease.3
““Severe cases of aplastic anemia are also treated with the stem cells from umbilical cord blood. Individuals with this rare disease have deficient bone marrow which is the tissue in our bones that produces blood cells...””
Most recently, Canadian Blood Services has launched a public cord blood bank which collects blood stem cells found in the umbilical cord, just minutes after a baby is born.6 Cord blood is preferred over other sources of stem cells because there is a decreased chance of rejection in transplant patients. Donors and recipients, therefore, do not need to be a perfect match. Cord blood stem cells are used as the standard treatment of many rare metabolic diseases such as Hurler syndrome,7 where these cells help to stop or slow the progression of disease by supplying the patient with the enzymes that they are deficient in. Cord blood is also used in the treatment of rare blood cancers including leukemia and lymphoma.1 Severe cases of aplastic anemia are also treated with the stem cells from umbilical cord blood. Individuals with this rare disease have deficient bone marrow which is the tissue in our bones that produces blood cells, including red blood cells, white blood cells and platelets. After treatment with chemotherapy, stem cells are transplanted into a patient to repopulate their bone marrow, allowing them to now produce healthy blood cells. Oftentimes transplant is the best chance of a cure for these patients.8
With an increasing number of clinical trials investigating the use of cord blood stem cells to treat an expanding number of diseases, the demand for donations will only increase from what it is now. Developing a national public bank for the collection of cord blood was a good first step, but Canada will need to step up if it is going to keep up with the future demand – not only with the number of samples, but also with the diversity of samples available to the public. Currently, Canadians with non-European backgrounds have a lower chance of finding a match than those of European descent. Even when these individuals look to international registries for a match, they find that donors to these banks are also populated predominantly with samples from individuals of European descent.9
Although there have been multiple initiatives that have moderately improved donor rates in the last decade, there are still hundreds of Canadians that die each year waiting for a vital transplant.3 What can Canada do to increase its donor rate? More can be done to improve upon existing infrastructure and programs. For example, efficiency of the current system can be addressed through the use of a clinical governance model to include processes to report on clinical effectiveness, risk management and national program auditing.3 In addition, a focus should be put on increasing public awareness and education to close the gap that remains between the intent to donate and actual donation. Both patient advocacy groups and Canadian Blood Services must continue to promote the social and economic benefits donation provides to all Canadians, especially for members of the rare disease community.
Works Cited:
1. Norris S. Organ Donation and Transplantation in Canada (Background Paper). Ottawa, ON: Library of Parliament. 2014.
2. Shemie SD, Baker AJ, Knoll G, et al. National recommendations for donation after cardiocirculatory death in Canada: Donation after cardiocirculatory death in Canada. CMAJ. 2006;175(8):S1.
3. Organ Donation and Transplantation in Canada. System Progress Report 2006-2015. Ottawa, ON. 2016.
4. Global Observatory on Donation and Transplantation. Government of Spain and World Health Organization; 2012.
5. Transplantation. Cystic Fibrosis Canada. 2017; http://www.cysticfibrosis.ca/about-cf/living-with-cystic-fibrosis/transplantation.
6. Canadian Blood Services’ Cord Blood Bank is now officially launched. Canadian Blood Services. 2015; https://blood.ca/en/media/canadian-blood-services-cord-blood-bank-is-now-officially-launched.
7. Jaap J. Boelens VKP, Jakub Tolar, Robert F. Wynn, Charles Peters. Current International Perspectives on Hematopoietic Stem Cell Transplantation for Inherited Metabolic Disorders. Pediatric Clinics of North America. 2010(57):123-145.
8. How transplant can treat SAA. Be the Match. 2016; https://bethematch.org/for-patients-and-families/learning-about-your-disease/severe-aplastic-anemia/how-transplant-can-treat-saa/.
9. Teotonio I. How Canada’s public cord blood bank can help save lives. Toronto Star. 2014.
Cite This Article:
Peacock E., Zheng K., Chan G., Ho J. Organ Donation in Canada: Where do we stand? Illustrated by A. Mir. Rare Disease Review. September 2017. DOI:10.13140/RG.2.2.15555.09763.
