Our Impact

Save Your Skin Foundation’s policy and advocacy work focuses on three main areas:

Government Relations, Health Policy and Advancement of treatment in the adjuvant setting and general treatment for melanomas and skin cancer

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Our Work

Louise Binder, a lawyer and health advocate, leads SYSF’s health policy work along with SYSF’s founder, Kathy Barnard. Together, they ensure the patient voice is included within political, institutional, organizational and government priorities, through a multitude of actions, including: 

• Meeting regularly with Federal and Provincial Health Ministers to discuss current issues, challenges, treatment options, policy, and patient needs

• Monitoring Health Canada on policy matters regarding clinical trials, patient experience on drug approval recommendations, and more timely access

• Monitoring pan-Canadian jurisdiction including CADTH & INESSS for their work on oncology drug review

• Assisting decision makers at all levels to make informed decisions about current and emerging issues and risks in skin cancer and all cancers

• Monitoring provincial jurisdictions for public reimbursement and patient access

• Drafting letters and gather support from other health organizations as issues arise or to congratulate on efforts

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International Advocacy for Patient Access to Treatment

Advocates across the world are working with those who make decisions about healthcare to ensure that the patients they serve have access to appropriate care.  Kathy Barnard of Save Your Skin in Canada knows first-hand how access can transform a patient’s chances. With Canada’s fragmented healthcare system, Kathy has been spearheading submissions to the assessment authorities and believes the next step is to work internationally to share learnings, approaches and evidence globally.

Kathy and Save Your Skin Foundation are proud members of several international initiatives:

• Global Coalition for Melanoma Patient Advocacy, with the Melanoma Research Foundation 

• Mi-Pac - Melanoma International Patient Advocates Coalition, with AIM at Melanoma 

• GOAL - Global Oncology Advocacy Leaders

 

​​Patient advocates have an important role to play here as they are aware of and can express many viewpoints of the patients they represent. In this paper, a group of patient advocates representing many thousands of patients from around the world explore the following:

• The varying definitions of patient value

• Value from the patient perspective

• Why and how decision‐makers should incorporate patient value in frameworks and guidelines

• How the advocacy community can work together to ensure that the concept of patient value is included in current and future value frameworks.