kidney foundation 2021 election toolkit

Equitable Access to Treatment Options for Canadians with Kidney Disease

2021 Election Toolkit A kidney patient’s voter’s guide to navigating the election

Kidney.ca/2021election

Equitable Access to Treatment Options for Canadians with Kidney Disease 2021 Election Toolkit

The Kidney Foundation of Canada T. 1-800-361-7494 or email [email protected]

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Contents Introduction .............................................................................................................................................. 3

The Commitment We Are Seeking from the Next Federal Government ................................................. 4

Living with Chronic Kidney Disease .......................................................................................................... 5

Facing the Facts ................................................................................................................................ 5

Addressing the Financial Burden of Kidney Disease ................................................................................. 6

Examining the Financial Burden of Kidney Disease .......................................................................... 6

Recommendations ............................................................................................................................ 8

Organ Donation and Transplantation ....................................................................................................... 9

Recommendations .......................................................................................................................... 11

Resources & Assistance .......................................................................................................................... 12

mailto:election2021@kidney



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Introduction The federal election will be held on Monday, September 20, 2021. This Election Toolkit is designed to help everyone affected by kidney disease by providing the information needed to participate. One of the most important elements of your local participation in the election process is to have your voice heard. Locally, we encourage you to participate in the following ways:

• Take advantage of opportunities to engage the candidates: Many communities are holding virtual meetings to accommodate everyone’s needs*

• Talk to candidates in your riding* • Send a letter to the candidates in your riding (a sample is available at kidney.ca/2021election) • Write a letter to the editor of your local newspaper • Talk to others about the burden of kidney disease and encourage them to show their support

by participating in these activities *All federal and provincially-mandated COVID-19 health guidelines should be strictly adhered to, and we encourage you to assess personal risk before engaging in any in-person activity. The Kidney Foundation of Canada has identified two key messages for this election. Background materials are available for each one; they are included in this package. Online Election Centre All materials can be found at kidney.ca/2021election. Keep us Informed If you participate in some way, write a letter or connect with the candidates in your area, please let us know by sending an update to [email protected] Even if you did not have the opportunity to have your question fielded at a candidates’ meeting, virtual or otherwise, or if your letter was not published, we’d still like to know you participated.


http://www.kidney.ca/2019election

mailto:[email protected]



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The Commitment We Are Seeking from the Next Federal Government We urge the federal government, working in collaboration with the provincial/territory governments, to ensure equitable access to treatment options for Canadians with a chronic illness, particularly those with chronic kidney disease, by:

• Addressing the financial burden of kidney disease via o Subsidized transportation costs and expanded access to travel grants,

particularly for people in rural areas o Minimized disparities in accessing medications for people with kidney

disease and developing mechanisms to offset costs equitably across jurisdictions

o Adequate support for home dialysis through reimbursement of utility costs and consideration of the financial and health literacy of patients when operationalizing “home first” policies

• Implementing a national strategy and oversight to ensure every potential deceased donor is identified and referred, and that every person awaiting transplant has equitable access to organ transplantation across the country.




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Living with Chronic Kidney Disease Four million Canadians have kidney diseasei with nearly 51,000 being treated for kidney failureii. Kidney disease changes people’s lives forever. Once diagnosed with kidney failure, an individual will require life-sustaining dialysis treatments for the rest of their life unless they are eligible for, and fortunate enough, to have a transplant. Those not eligible for a transplant will bear the burden of costs associated with dialysis for the rest of their lives.

People living with kidney failure and their families often face substantial financial hardships because of how the symptoms of their chronic illness impact their physical, emotional, and psychological well-being. This is compounded by the demands of their dialysis treatment, which greatly affects their productivity level both at home and in the workforce. Many people with kidney disease frequently experience significant financial challenges related to loss of income, and increased costs for transportation and medication.

Facing the Facts • 1 in 10 Canadians has kidney disease; that’s 4 million people.ii

• Nearly 51,000 Canadians are being treated for kidney failure.ii

• There is no cure for kidney disease.• Treatment for those with end-stage kidney disease:

o 57% are on dialysiso 43% have a functioning transplant.ii

• 77% of the 4,419 Canadians on the waiting list for an organ transplant are waiting for a kidney.iii

• Of the people on dialysis, only 12% are on the waiting list for a transplant.ii and iii

• There were 1,789 kidney transplants performed in 2019.iii

• Dialysis costs the health care system nearly $100,000 per patient per year.i

• Despite an increased push for home dialysis therapies to optimize health, these therapies transfer the cost savings from the health care system onto the patient and their families.

• People undergoing long-term dialysis are at increased risk of COVID-19 infection and death.iv

• A large proportion of transplant patients remain at risk of COVID-19, even if they have been vaccinated.v

i Manns, Braden et al. “The Financial Impact of Advanced Kidney Disease on Canada Pension Plan and Private Disability Insurance Costs” Canadian journal of kidney health and disease vol. 4 2054358117703986. 17 Apr. 2017, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5406196/ ii Canadian Organ Replacement Register, 2020, Canadian Institute for Health Information. https://www.cihi.ca/en/organ-replacement-in-canada-corr-annual-statistics-2020 with data collected by the Quebec Branch of The Kidney Foundation of Canada as provided by renal units. iii CORR e-Statistics on Organ Transplants, Waiting Lists and Donors 2020. https://www.cihi.ca/en/e-statistics-on-organ-transplants-waiting-lists-and-donors iv Taji, L. et al. COVID-19 in patients undergoing long-term dialysis in Ontario. CMAJ. 2021 Feb 22;193(8):E278-E284.doi: 10.1503/cmaj.202601. Epub 2021 Feb 4. v J. Stumpf et al., Humoral and cellular immunity to SARS-CoV-2 vaccination in renal transplant versus dialysis patients: A prospective, multicenter observational study using mRNA-1273 or BNT162b2 mRNA vaccine, The Lancet Regional Health – Europe (2021), https://doi.org/10.1016/j.lanepe.2021.100178


https://www.cihi.ca/en/organ-replacement-in-canada-corr-annual-statistics-2020


https://www.cihi.ca/en/e-statistics-on-organ-transplants-waiting-lists-and-donors

https://www.cihi.ca/en/e-statistics-on-organ-transplants-waiting-lists-and-donors

https://doi.org/10.1016/j.lanepe.2021.100178



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Addressing the Financial Burden of Kidney Disease

Canadians with kidney failure and their families face significant financial challenges as a result of their dialysis treatment. Starting dialysis often leads to a decrease of income at the same time that out-of-pocket costs increase. Government coverage and financial support for people on dialysis varies, resulting in inequalities across jurisdictions. Being on dialysis or having a kidney transplant can place significant financial challenges on patients and families related to loss of income and increased out-of-pocket treatment-related expenses. These costs can include:

• Transportation to and from dialysis treatments, attending frequent medical tests and procedures (especially those that may not be available at their local hospital).

• Travel costs for home dialysis training. • Loss of employment income during home dialysis training. • Travel costs for patients and their caregivers who do not live within proximity to the regional

transplant centres for assessments, accommodations for transplant surgery as well as post-transplant follow-up appointments.

• Increased water, electricity and garbage disposal fees for home dialysis. • Disparities in accessing medications for people with kidney disease across jurisdictions. • Nutritional supplements and special diet requirements which are not covered. • Relocation from remote communities to access dialysis.

Examining the Financial Burden of Kidney Disease In 2016, The Kidney Foundation of Canada and the Canadian Association of Nephrology Social Workers (CANSW) conducted a Canadian study to determine the extent of the financial burden which patients and families experience living with kidney disease. It identified the increased cost to patients and their caregivers who complete home dialysis treatments, transportation costs to and from hospital-based treatment, increased food supplements and medications needs.

• Many Canadians report a drop in household income following the onset of dialysis.

Nearly 50% of respondents indicated that their annual household income decreased since starting dialysis. Of those who said their income decreased, more than half said it had decreased by 40% or more.




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• The proportion of patients on dialysis who are below Canada’s Low Income Cut-Off (LICO)i is much higher than the general population.

Of all respondents, 41% are below the Canadian Low Income Cut-Off (LICO), compared to 8-14% of the general Canadian population.

• Out-of-pocket costs related to dialysis treatment are a significant burden.

The reported annual average out-of-pocket costs related to dialysis treatment ranged from $1,400 to $2,500 (depending on treatment modality).ii This is significant when you consider that:

• 55% of respondents reported an annual household income of less than $35,000; and

• 23% of respondents reported an annual household income of less than $20,000.

The average out-of-pocket costs represent a considerable portion of total annual household income (up to 12.5% for those reporting an annual household income of $20,000). The burden of these out-of-pocket costs is substantial. Of all respondents, 21% reported going without food or basic necessities in the last six months due to the financial burden of dialysis treatment.

There is no cure for kidney disease. Not all Canadians on dialysis are eligible for a transplant. Of the people on dialysis, only 16% are on the waiting list for a transplant. People not eligible for a transplant will bear the burden of the costs associated with dialysis for the rest of their lives. The impact of poverty as a social determinant of health is significant when:

• 27% of respondents who fall below the LICO indicated that they missed purchasing

medication in the last six months due to a financial barrier. • 21% of all respondents indicated that they had gone without food or necessities in the last six

months due to financial barriers. These respondents could be particularly vulnerable individuals. The consequence of going without required medications or maintaining an appropriate specialized renal diet can have a significant impact on their health. A slight change can result in hospitalization.

i Statistics Canada defines Low Income Cut-Offs (LICOs) as income thresholds below which a family will likely devote a larger share of its income on the necessities of food, shelter and clothing than the average family. The approach is essentially to estimate an income threshold at which families are expected to spend 20 percentage points more than the average family on food, shelter and clothing. ii Non-response was interpreted as having a $0 value for many of the sections, and therefore it is likely that the results here systematically underestimate true costs, especially monthly out-of-pocket costs.




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The Canadian Health Act (1984) was established to ensure that all eligible residents of Canada have reasonable access to insured health services on a prepaid basis, without direct charges at the point of service for such service. The true reality is that in many remote or rural areas patients receiving dialysis treatments do not have access to available, accessible and affordable public transportation systems. Of those public transit systems available, many people receiving dialysis treatments are not eligible for the service as the requirements do not take into consideration the physical impact of their chronic illness and the day-to-day fluctuation in their medical status. Recommendations The significant financial hardships associated with dialysis are evident. The Kidney Foundation of Canada makes the following recommendations to address the financial burden of kidney failure.

• Subsidized transportation costs and expanded access to travel grants, particularly for people in rural areas.

• Minimized disparities in accessing medications for people with kidney disease and developing mechanisms to offset costs equitably across jurisdictions.

• Adequate support for home dialysis through reimbursement of utility costs and consideration of the financial and health literacy of patients when operationalizing “home first” policies.

Understanding the economic context of out-of-pocket costs and how it affects the financial and overall health of a kidney patient is critical to effect change in our public systems.




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Organ Donation and Transplantation 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 over three and a half years. However, this varies significantly across regions. In 2019, 249 people died while waiting for a transplant, of which 72 were waiting for a kidney.i Dialysis has an annual mortality rate of nearly 20%. Just 44% of people on dialysis are alive five years after starting dialysis.ii Increasing transplantation rates is a matter of life and death for people with kidney failure. Organ donation is, therefore, a high priority issue for The Kidney Foundation. There are over 4,300 Canadians waiting for an organ transplant, more than 76% of whom are waiting for a kidney.i There are far more people waiting for transplants than just those on the waitlist, which is just the tip of the iceberg. 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 three times a week for four to five hours at a time, to live a relatively normal, healthy and productive life. 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 saves up to $84,000 annually per patient transplantediii. 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 1,789 kidney transplants were performed in 2019i there are nearly twice as many people still waiting for a kidney.

I Canadian Organ Replacement Register, 2020, Canadian Institute for Health Information. https://www.cihi.ca/sites/default/files/document/corr-dialysis-transplantation-donation-2010-2019-snapshot-en.pdf ii Canadian Organ Replacement Register, 2020, Canadian Institute for Health Information. https://www.cihi.ca/en/organ-replacement-in-canada-corr-annual-statistics-2020 iii Prevalence of Severe Kidney Disease and Use of Dialysis and Transplantation Across Alberta from 2004-2013, http://www.albertahealthservices.ca/assets/about/scn/ahs-scn-kh-annual-kidneycare-2015.pdf.


https://www.cihi.ca/sites/default/files/document/corr-dialysis-transplantation-donation-2010-2019-snapshot-en.pdf

https://www.cihi.ca/sites/default/files/document/corr-dialysis-transplantation-donation-2010-2019-snapshot-en.pdf



http://www.albertahealthservices.ca/assets/about/scn/ahs-scn-kh-annual-kidneycare-2015.pdf



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While the preferred treatment is kidney transplantation, the majority of patients are treated with dialysis therapy, due to the shortage 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 2019, kidney disease was the 10th leading cause of death in Canadai with an annual mortality of nearly 20%.ii Organ donation is a complex, multi-faceted process influenced by a wide variety of activities occurring at the individual, institutional, and societal level. Every element of the process is critical and its success or failure will impact on the donation rate. There is no single cause for the organ donor shortage in Canada and no single strategy will be effective in resolving the issue, just as no single group or organization will be successful on its own. The key is an integrated approach and a set of initiatives designed to strengthen all components of the organ and tissue donation and distribution process; a strategy that clearly articulates national, provincial, and territorial jurisdictions, responsibilities, and accountabilities. The Kidney Foundation of Canada partners on the key national Organ Donation and Transplantation (ODT) Collaborative. The purpose of the ODT Collaborative is to inform thinking and encourage action on ways of facilitating and supporting collaboration among and between federal-provincial-territorial governments, Canadian Blood Services (CBS) and stakeholders to improve Canada’s organ donation and transplantation system performance. The Kidney Foundation of Canada applauds the proposed development of a pan-Canadian data and performance system for organ donation and transplantation, as announced in the 2019 Federal Budget. The proposed investment of $36.5 million over five years will help Health Canada, in collaboration with provincial and territorial partners, to improve consistency and quality in data, allowing more donors and recipients to be effectively matched in order to ensure Canadians have timely and effective access to organ transplant care.

i Statistics Canada https://www150.statcan.gc.ca/t1/tbl1/en/tv.action?pid=1310039401 ii Canadian Organ Replacement Register, 2020, Canadian Institute for Health Information. https://www.cihi.ca/en/organ-replacement-in-canada-corr-annual-statistics-2020


https://www150.statcan.gc.ca/t1/tbl1/en/tv.action?pid=1310039401





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Recommendations The Kidney Foundation of Canada calls upon the Federal/Provincial/Territorial Conference of Health ministers to implement a national strategy and oversight to ensure every potential deceased donor is identified and referred, 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. The strategy should be developed in collaboration with a broad range of stakeholders including government, health care, and the public and voluntary sector.




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Resources & Assistance Lydia Lauder, Director, Programs & Public Policy Direct Line: 289-326-3495 [email protected] Media Relations Wendy Kudeba, Director, Marketing & Communications Direct Line: 289-329-0757 [email protected] Elections Canada https://www.elections.ca/home.aspx Conservative Party of Canada https://www.conservative.ca/ Green Party https://www.greenparty.ca/en Liberal Party https://www.liberal.ca/ NDP Party https://www.ndp.ca/ Registered Political Parties and Parties Eligible for Registration https://www.elections.ca/content.aspx?section=pol&dir=par&document=index&lang=e




https://www.elections.ca/home.aspx

https://www.conservative.ca/

https://www.greenparty.ca/en

https://www.liberal.ca/

https://www.ndp.ca/

https://www.elections.ca/content.aspx?section=pol&dir=par&document=index&lang=e

kidney foundation 2021 election toolkit

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