Appendix A: Organizations reporting public policy dialogue and development activities

Alberta Lung Association

To engage lung disease patients, care givers and medical representatives to inform and educate government about the issues facing Albertans with lung disease and their families. By developing relationships and informing key political representatives who have oversight for research funding, supporting early detection efforts and providing additional support and treatment options for patients with lung diseases. Our efforts seek to keep these issues top of mind for those key decision makers in government.

Allergies Québec / Allergy Québec

Travail effectué pour la conception d’un projet de loi encadrant la prise en charge des étudiants allergiques. Ceci est en lien avec la mission de promouvoir la sécurité et améliorer la qualité de vie de ceux et celles avec des allergies alimentaires. et sensibiliser à ce problème de santé publique.

Alzheimer Society Of B.C.

The Alzheimer Society of B.C. works in partnership with the Government of B.C. to fund and deliver First Link® dementia support, a referral program for healthcare providers and care partners to connect people affected by dementia to the Society’s support services. Quarterly data reports on First Link® are provided to the Ministry of Health and regional health authorities. On occasion, the Society meets with B.C. MLAs to inform them about the healthcare and social needs of people living with dementia and their care partners. At the request of MLAs, the Society will also present information about dementia at the B.C. Legislature and at public constituency events. A Society web-based guide provides information to people affected by dementia about how to inform their MLA about their experience with the disease. The Society liaises with staff from the Ministry of Health in respect of Ministry Policy initiatives affecting people with dementia and their care partners. The Society submits reports when invited, to Legislative Committees such as Finance and Health.

Alzheimer Society Of Canada

In fiscal 2018-19 the Alzheimer Society of Canada’s political activities with the Government of Canada were largely focused on development of the national dementia strategy and funding in federal Budget 2019 to support its implementation. This pan-Canadian strategy will increase awareness, scale up best practices and introduce measures which address stigma. The specific activities included meetings and communications with the Ministers of Health, Finance and Seniors, Members of Parliament, Senators, and with senior officials at the Public Health Agency of Canada and Department of Finance. Representations were also made to the Government on legislative and policy issues associated with the Accessible Canada Act, Genetic Non-Discrimination Act and Framework on Palliative Care.

Alzheimer Society Of Manitoba Inc.

Wrote letters to government organizations advocating for persons with dementia and their family care providers. Meet and communicate with elected officials and senior government advisors.

Alzheimer Society Of Simcoe County

The Alzheimer Society of Simcoe County shared information with the public and local MPPs about the impact of Alzheimer’s disease and other dementias on the people of Ontario, and issued a call to action to support continued investments in dementia care and supports. This activity relates to the organization’s goal to improve the quality of life of persons who are directly affected by dementia.

Amyotrophic Lateral Sclerosis Society Of Canada

ALS Canada is responsible for the national ALS research program, federal advocacy and directly responsible for support and services for people affected by ALS in Ontario. Aligned with the mission, ALS Canada advocated to the federal government to increase awareness of ALS and the needs of Canadians and their families living with this terminal disease, ALS specific research funding, and issues relating to access for emerging therapies. Within Ontario, advocacy efforts were also undertaken for these issues as well as access to non-invasive ventilation in long-term care facilities.

Association Des Personnes Handicapees Visuelles Du Bas St-Laurent

Participation aux comités consultatifs pour l’accessibilitédes services publics et privés aux personnes handicapées visuelles

Asthma Canada

As a member of the Clean Economy Alliance, Asthma Canada, along with 60 other member organizations signed onto a letter addressed to Ontario’s Minister of the Environment, Conservation and Parks, calling for an effective plan to deal with climate change in Ontario and fought against a roll-back to existing climate change initiatives. We also participated in the development of the provincial Make It Better Campaign, which is focused on building a unified approach to children’s health and climate change in Ontario. We continued our letter writing campaign on national pharmacare, streamlining our submission platform and publishing community letters. This campaign gives members of the asthma community the opportunity to get involved by sending letters to their government representatives on the impacts of OHIP + and the new Ontario Lung Act. Working alongside other key stakeholders, we successfully played a role in getting valved-holding chambers covered for those aged 12 and under. As a chronic disease with no cure, having varied and innovative treatment options available is vital to ensuring that all Canadians are able to control their asthma. This year, we made submissions to both CADTH (Canada’s national drug review body) and British Columbia’s Pharmacare Review in support of the biologic treatment benralizumab (Fasenra). Asthma Canada responded to a CADTH Request for Advice regarding all currently available biologic medications used to treat severe eosinophilic asthma. We made a number of recommendations regarding criteria for eosinophil levels, reversibility, and on preventing wastage, ensuring patient and physician choice, age indications, ensuring equal access throughout Canada and ensuring that those with asthma who smoke are not disqualified from accessing required treatments. We also made another submission to British Columbia’s Pharmacare Review for Aermony Respiclick and Arbesda Respimat. By making submissions to CADTH and provincial drug review bodies, we work to ensure that patient input is taken into consideration when new treatments are being reviewed, helping improve access and advocating for increased treatment coverage.

Autism Society Ontario

Participation by invitation at meetings with various Government of Ontario committees (working groups, legislative committees, etc.) dealing specifically with government programs or policies that affect ASD and/or their families. Writing responses papers to requests for input on relevant government initiatives with ASD. Topics include: housing, education, Disability Tax Credit and RDSPs/ Also responding to media requests for input on ASD public policy matters and to actively promote our work and participation on these matters. Providing non-partisan resources for voters to inform them on ASD related matters when speaking with local candidates during election times.

Autisme De l’Est-Du-Québec

L’organisme effectue de la représentation et de la défense des droits avec d’autres organismes communautaires. Aussi, par la sensibilisation et l’information, il défend les droits des personnes ayant un TSA ainsi que leurs familles.

Canadian Cancer Society

The Canadian Cancer Society (CCS) supports healthy public policy at all levels of government (including federal, provincial, territorial, municipal, First Nations and Internationally) to advance the CCS mission to eradicate cancer and to improve the lives of people living with cancer, CCS advocates to advance its mission on issues such as asbestos, indoor tanning, tobacco control, healthy eating, physical activity, radon, occupational and environmental exposure to carcinogens, access to drugs, access to treatment/health care, support for family caregivers, palliative and end of life care, cancer control strategies, research funding, lottery regulation, charitable tax credits, and others. As appropriate, CCS advocates internationally such as on matters related to the WHO Framework Convention on Tobacco Control and the UN High Level Declaration on Non-Communicable Diseases.

Canadian Cancer Survivor Network

CCSN is established to advance education by organizing and participating in conferences and speaking engagements to the public on topics related to cancer. These included: A Federal Legislative Reception on June 2018 to raise awareness on immunotherapy for cancer treatments. Ontario Legislative Reception on October 2018 to raise awareness on biologics and biosimilars and patient choice. The legislative reception is a non-partisan activity with speakers including patients, oncologists, members of every party, and members of several cancer organizations. An All-party Cancer Caucus in the Ontario legislature on March and November 2018, as well as an All-party Cancer Caucus in the Alberta legislature on May 2018. Both cancer caucuses provided education on the use of cancer rehabilitation for patients and survivors. The caucus is a non-partisan activity with speakers including patients, survivors, and members of every party. To undertake activities ancillary and incidental to the attainment of CCSN’s charitable purposes CCSN organizes questions on priority issues of cancer patients and survivors, sent to every candidate of every party in federal and provincial elections, and the answers are posted on the CCSN website.

Canadian Diabetes Association

We routinely engage in a non-partisan fashion in methods such as those listed below to educate policy and decision makers about the burden that diabetes imposes on people with the disease, our economy, healthcare system, government and potential measure to address this.

Childhood Obesity Foundation (COF)

Marketing to Kids: The World Health Organization and health organizations worldwide are leading efforts to ensure children everywhere are protected against food and beverage marketing. The Stop Marketing for Kids (Stop M2K!) Coalition, founded by the Heart and Stroke Foundation in collaboration with the Childhood Obesity Foundation, recommends restricting the commercial marketing of all food and beverages to children and youth age 16 years and younger. This policy recommendation aligns with Childhood Obesity Foundation’s mission to lead a societal shift toward healthy eating and active lifestyles to promote childhood healthy weights and the resulting physical and emotional benefits. We have not made any gifts to qualified donees intended for political purposes. Reduction of Sugary Drinks: The Rethink Sugary Drinks Coalition is a provincial coalition co-led by the Childhood Obesity Foundation and BC Alliance for Healthy Living. The mission of this coalition is to work collaboratively to oversee the development and implementation of a multi-pronged approach to decrease sugary drinks consumption in BC. The Childhood Obesity Foundation also participates on a national working group of stakeholders who work together to decrease sugary drink consumption across Canada. There is a strong scientific consensus that excessive Sugary Sweetened Beverage (SSB) intake is a major risk factor for the development of unhealthy weights. As such, a primary goal of both of these groups is to advocate for a tax on sugary drinks. This policy recommendation aligns with the Childhood Obesity Foundation’s mission to lead a societal shift toward healthy eating and active lifestyles to promote childhood healthy weights and the resulting physical and emotional benefits. We have not made any gifts to qualified donees intended for political purposes

Crohn’s And Colitis Canada

  1. ‘No Forced Switch’ Campaign Crohn’s and Colitis Canada encouraged its patient community to engage in the organization’s digital letter-writing tool to voice their concerns to their provincial representative and Minister of Health regarding a considered, but not yet formally proposed, Ministry of Health policy to switch Crohn’s or colitis patients currently stable on a biologic to a biosimilar. 
  2. ‘Increase Washroom Access’ Campaign Crohn’s and Colitis Canada encouraged its patient community to engage in the organization’s digital letter-writing tool to ask their federal representative and the federal Minister of Persons with Disabilities to ensure that washroom access within federal government buildings would be included in the upcoming Canadians with Disabilities Act. These activities align with our Mission which includes a statement indicating that Crohn’s and Colitis Canada will raise funds to advocate to governments and stakeholders on behalf of those affected by Crohn’s and colitis.

Cystic Fibrosis Canada

The charity’s political activities were primarily focused on advocating for (1) cystic fibrosis newborn screening in Quebec, and (2) access to medicines to treat cystic fibrosis. Other activities included payments to organizations that support the charity’s advocacy, public policy and government relations priorities. These organizations include the Health Charities Coalition of Canada, Research Canada, the Public Policy Forum and the C.D. Howe Institute Health Policy Council. Throughout the year, the charity’s program expenditures included public service announcements and news releases related to advocacy priorities. Cystic Fibrosis Canada’s mission is to end cystic fibrosis (CF). We will help all people living with CF by funding targeted world-class research, supporting and advocating for high-quality individualized CF care and raising and allocating funds for these purposes.

Eating Disorder Foundation Of NL Inc.

Our political activity relates to communication with the provincial government and regional health authorities to ensure eating disorder services are in place. We also lobby government to increase grants to us to allow us to offer our programs & services.

Heart And Stroke Foundation Of Canada

Calling on elected officlas to support and complete the federal healthy eating strategy. As diet is a significant risk factor for heart disease stroke and other co-morbidities, these asks are directly related to our charitable purpose of preventing disease. We asked elected officials to achieve this by -including restrictions on food and beverage marketing to children (bill s-228) -complete cg2 for front-of-package nutrition labeling; invest in a healthy eating initiative such as a school nutrition program -coordinate action on restaurant menu labeling. 

  • Calling on elected officials for an interim order and strong regulations on vaping. This is directly related to our charitable purpose of preventing disease. 
  • Calling on elected officials to support a universal national pharmacare program. 
  • Calling on elected officials to renew and augment funding for heart & stroke’s federally funded “advancing women’s heart & brain health initiative”. 
  • Calling on elected officials to ensure that sex and gender-based analysis and reporting are required for all federally-funded health research. 
  • Calling on elected officials to prevent death from cardiac arrest by – investing in a public awareness campaign – promoting placement of defibrillators in areas under federal jurisdiction – engage with indigenous organizations and leaders to facilitate discussions on cardiac arrest rates among indigenous people with the goal of improving resuscitation outcomes. 
  • Calling on elected officials to address dementia by implementing a national strategy to address dementia in order to facilitate these calls to action, our activities included the following tactics: 
    • Media releases and advertisements 
    • Op-eds 
    • Reception for elected officials on parliament hill focusing on women’s health 
    • Letter writing campaign, electronic 
    • Social media promotion 
    • Collaborating with partners/stakeholders 
    • Meetings with mps and other government/public officials 
    • Surveying political parties leading up to the general election regarding their stance on various issues key to our charitable mission. – Posting all responses on our website in a non-partisan manner.

Huntington Society Of Canada

HSC advocates for genetic fairness on behalf of Canadians living with Huntington disease. HSC advocates at both the Federal and Provincial levels of government to end discrimination and create a safe environment for people to participate in genetic testing and to benefit from their own genetic information without being discriminated against because of it.

Juvenile Diabetes Research Foundation Canada

JDRF is committed to delivering a cure for Type 1 Diabetes (T1D) and its complications through the support of research. To this end, we engage directly with federal and provincial representatives and encourage our supporters to do the same to raise awareness about the financial and human costs of the disease-for our health care system and the people who live with it in order to make the case that these may be reduced through investment in research aimed at curing, preventing and treating the disease. Political outreach in 2018, included direct outreach by staff, volunteer board members and a two-day lobbying event Kids for a Cure Lobby Day where youth delegates and their parents travelled to Ottawa for the purposes of meeting with Members of Parliament and Senators. The purpose of this activity was to secure renewed federal funding for research undertaken by the JDRF Canadian Clinical Trial Network. All engagement undertaken was strictly non-partisan and using the methods set out below in Section 2.

Multiple Sclerosis Society Of Canada

The goal of government relations and advocacy is to support the mission of the MS Society of Canada by advocating for improvements to governmental policies and legislation and relevant non-governmental practices, actions and attitudes. These non-partisan efforts are designed to increase responsiveness that will deliver meaningful benefit to the greatest possible number of primary clients and are likely to be successful. The MS Society is focused on ensuring Canadians living with MS and their families have the opportunity to participate fully in all aspects of life. We are advocating for policy changes that: Improve income and employment security; and enhance access (accessibility legislation, access to treatments, and comprehensive home care); and accelerate research.

New Brunswick Lung Association Inc.

Met with NB Minister of Health regarding Lung Transplant Program. Met with NB Minister of Environment on woodstove smoke issues and electric vehicles. With partners, prepared a white paper of recommendations for B26 Chemical Management Program, are presented that to Health Canada. Total time spent on advocacy = 15 days.

Ontario Lung Association

  1. Meetings with elected officials and their staff. 
  2. Letter writing campaigns aimed at MPP’s. 
  3. Asking supporters to sign a petition. 
  4. Meet with Ministry officials. To support legislation and programs that will improve lung health and prevent lung disease.

Ottawa Regional Cancer Foundation

During the fiscal year, the Charity’s political activities were focused on building strategic relationships at the provincial and federal levels of government in order to identify additional funding opportunities to further the Charity’s ability to provide non-medical programming to meet cancer patients’ survivorship needs. Additionally the Charity sought to highlight the struggles faced by cancer patients to galvanize members of government to provide funding for a cancer coaching pilot to help support these individuals.

Ovarian Cancer Canada

Ovarian Cancer Canada conducted activities to raise awareness of elected federal and provincial representative for the need of: 

  1. Funding for ovarian cancer research 
  2. Funding for new ovarian cancer treatment

Parkinson Canada Inc.

Parkinson Canada’s advocacy activities reflects the priorities of the Parkinson’s community and includes working with all levels of government on federal and pan-Canadian initiatives, mobilizing members of the Parkinson’s community to effect positive change, and raising awareness about Parkinson’s disease. Through these efforts, Parkinson Canada is working to improve the quality of life of people living with Parkinson’s, increase support for caregivers, protect people affected by Parkinson’s from poverty and increase funding for neurodegenerative research to improve treatment and help find a cure.

Parkinson Québec

Participation à une table de réflexion sur les besoins et enjeux des personnes qui vivent avec une maladie neurologique évolutive et préparation d’un mémoire commun, dans le cadre des Partenaires Neuro. Les << Partenaires Neuro >> regroupent 5 organismes sans but lucratif dédiés à la recherche et au soutien des personnes atteintes d’une maladie neurologique ou neuromusculaire évolutive. Les membres de ce regroupement sont: 

  • Fédération québécoise des Sociétés Alzheimer; 
  • Société canadienne de la sclérose en plaques, division du Québec; 
  • La Société SLA du Québec; -Parkinson Québec; 
  • Dystrophie musculaire Canada. 

Préparation d’une représentation à l’Assemblée nationale qui s’est tenue le 27 février 2019 Présentation d’une proposition de formation aux personnels du réseau de la santé, au Ministère de la Santé et Services Sociaux.

Prostate Cancer Canada

Prostate Cancer Canada is the champion for the cause of prostate cancer, ensuring that governments across the country provide Canadian men with equitable and timely access to testing and therapies. We support healthy public policy at all levels of government.

Pulmonary Hypertension Association Of Canada

Lead a public awareness campaign to encourage provincial drug plans to provide reimbursement for new treatment options for pulmonary hypertension.

Rethink Breast Cancer Canada

Rethink advocated for continuing monitoring of the pan-Canadian Pharmaceutical Alliance (pCPA) set of crucial benchmarks that improve transparency and timelines when negotiating the price of cancer medications. This involved a media campaign and social media campaign of blog posts, tweets and Facebook posts. We brought a group of young breast cancer patients and advocates to fill the gallery during Question Period at Queen’s Park in October. Rethink organized a workshop for young women with metastatic breast cancer to gather feedback and input on patient values and the role patient values play in health Technology Assessment. These activities were related to our charitable purpose of fighting breast cancer through supporting young women concerned about or affected by breast cancer in Canada.

Société Canadienne De La Sclérose En Plaques (Division Du Québec)

Nos efforts danss le domaine des relations avec les gouvernements et de la défense des droits et des intérèts ont pour but de soutenir la mission de la Société canadienne de la SP grâce à la promotion d’améllorations portant sur des politiques gouvernemenetales et des lois ainsi que sur des pratiques, des acttions et des positions non gouvernementales pertinentes. Ces activités non partisanes visent à accroître la réceptivité des gouvernements,des autorités locales, des entreprises et d’autres organismes concernés relativement aux questions d’intérêt en lien avec la Société de la SP. Dans le domaine de la défense des droits et des intérêts, la Société de la SP s’affaire essentiellement à obtenir des résultats qui profiteront concrètement au plusgrand nombre possible de personnes atteintes de SP en menant des activités qui sont conçues en fonction de leurs chance de succès. Seelon les réponses reçues à l’occasion d’un sondage d’envergure mené auprès des Canadiens touchés par la SP, l’organisme a déterminé les domaines d’intervention sulvants: sécurité de l’emploi et du revenu,soutien aux proches aidants, mise en placed’un systèmee coordonné de soins et de soutien continus,recherche sur la SPprogressive, hébergement adapté, financement des cliniques de SP, accès aux médicaments.

The Arthritis Society

The issues focused on relate to ensure that arthritis patients have timely access to the care they need, to maintain medical cannabis access for patients, implementation of an allied health professional support program, supporting policy decision-making for the introduction of biosimilars, and advocating for shorter wait times for joint replacement surgeries. We have been focused on educating and engaging the public on the issues, providing tools for them to share their views and communicate with political candidates and officials and formal submissions to government.

The Kidney Foundation Of Canada 

  • Supported Bill 222 – an amendment to the Human Rights Code re: Genetic Characteristics (Genetic Discrimination)
  • Volunteers and staff presented to the government’s special committee on Organ Donation

The Lung Association Of Saskatchewan Inc.

Advocacy to all local levels of government for Outdoor Smoke Free Spaces, Smoke Free Social Housing and changes to the Sleep Apnea program. Outdoor smoke free spaces and smoke free social housing will reduce exposure to tobacco and improve respiratory health. Ensuring access to CPAP machines for individuals with Sleep Apnea falls into our charitable purposes of respiratory health. The Lung Association, Saskatchewan has developed a Provincial Lung Health Alliance partnering with industry, members of the public and the Saskatchewan government to develop Lung Health Strategy for the province of Saskatchewan.

State of Patient Associations in Canada

  1. Executive Summary
  2. Introduction
  3. Revenue
  4. Fundraising
  5. Expenses
  6. Human Resources
  7. Public Policy Activity
  8. Post-COVID Implications
  9. How Patient-Focused Charities Describe Themselves
  10. Appendix A: Organizations reporting public policy dialogue and development activities
  11. Appendix B: Spending on Public Policy activities of every reporting organization
  12. Appendix C: Disease specific non-profit groups without charitable registration
  13. Appendix D: The differences between a registered charity and a non-profit organization
  14. Appendix E: Program areas and field codes
  15. Appendix F: Patient-Focused charities included in the report
  16. References
  17. Data