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Summer Webinar 2: Engaging Political Parties, Politicians, and Policy Makers on Patient Needs

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Canadian Organization for Rare Disorders
Canadian Organization for Rare Disorders

Bill Dempster of 3Sixty Public Affairs will moderate a peerless political expert panel that will cover the bases across Canada’s three main national political parties: Kathleen Monk, Principal, Earnscliffe Strategy Group: communications and campaign strategist and past Director of Communications for the NDP Geoff Turner, Senior Consultant, Bluesky Strategy Group: longtime Liberal strategist and advisor at the provincial (Ontario) and federal levels Roberta Kramchynsky, Manager, StrategyCorp: health policy-focused public affairs strategist and former staffer to CPC MPs That panel will be followed by experts within CORD’s own community to take last week’s discussion further, and drill down on specific approaches to key issues for rare diseases policy, including Health Canada’s “What We Heard” Report on Building a National Strategy for Drugs for Rare Diseases, the latest PMPRB proposals on drug price controls and developments at the Canadian Agency for Drugs and Technologies in Health in their quest to build a national formulary.

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“SORRY TO INTERRUPT SUMMER HOLIDAYS” Webinar Series Webinar 2: Engaging Political Parties, Politicians, and Policy Makers on Patient Needs July 29, 2021
• Health Canada’s “What We Heard” report on Building a National Strategy for Drugs for Rare Diseases – they listened! now… to action as part of Canada’s Rare Disease Strategy • Continuing “Whack a Mole” with PMPRB: DOWN with implementation of new guidelines (3rd six-month hiatus); UP pops “out of the blue” pricing restrictions on grandfathered drugs – now… August 31 for input • CADTH’s new Advisory Panel for a pan-Canadian Prescription Drug List: where’s the rare? • SURPRISE! (Not). Federal election this fall. How do we align to align all political parties and political candidates to support “rare disease” and “rare drug” strategy (and safeguard the $500 million annual commitment) now… Welcome and Brief Overview Durhane Wong-Rieger, CORD Bill Dempster, 3Sixty Public Affairs Four BIG Issues for update
Kathleen Monk, Earnscliffe Strategy Group Geoff Turner, Bluesky Strategy Group Roberta Kramchynsky, StrategyCorp Moderators: Durhane Wong-Rieger, CORD Bill Dempster, 3Sixty Public Affairs CORD’s Mid-summer Super- panel and Town Hall!
Tell your friends and colleagues who missed our webinars to visit CORD’s YouTube and SlideShare Channels! https://www.youtube.com/user/CORDRareDisorders https://www.slideshare.net/raredisorders THANK YOU FOR JOINING! OUR “SORRY TO INTERRUPT SUMMER HOLIDAYS” Webinar Series
© 2020 3Sixty Public Affairs Inc. Political situation • Summer election call nearly a certainty despite PM’s consistent denials • Campaign teams, riding nominations, farewell speeches by exiting MPs, lawn signs ordered; COVID trends heading in the right direction • Potential election timing: week of Aug 16/23 -> election Sept 27 or Oct 4 • Election calculus complicated & campaigns matter: • Liberals aim to make gains in BC and Ontario and hold current seats in Quebec • NDP / Jagmeet Singh’s support rising which could split the left • Conservatives / O’Toole have higher “negatives” than other parties, but have not yet been in spotlight 5
© 2020 3Sixty Public Affairs Inc. Election issues / positions that could be relevant 6 • National Pharmacare • Canada Drug Agency • Rare Diseases Drug Strategy ($500m/yr) • Rare Diseases Treatments ($500M/yr provinces-2019) • Reform PMPRB • Boost Canada Health Transfer • “New Deal” that includes pharmacare • National Pharmacare - basic formulary (2019)
© 2020 3Sixty Public Affairs Inc. What will the ballot box issue be? 7 • COVID pandemic response? • Economic recovery? • Deficits? • Affordability (housing, gas, food, pharmacare, child care etc.)? • Environment? Source (graph): Nanos – National survey released July 2021. Nanos Research, RDD dual frame hybrid telephone and online random survey, June 30th to July 5th, 2021, n=1051, accurate 3.1 percentage points plus or minus, 19 times out of 20. Most important policy that will influence vote QUESTION: What will be the most important policy issue that will influence your vote if a federal election happens this coming Fall? [RANDOMIZE] ?
How to translate CORD’s key asks into a high-impact election plan? Jumpstart Canada’s Rare Disease Drug Policy (2021) 1. Patient Empowerment 2. Canadian Rare Drug Agency 3. R&D incentives 4. Speed access to treatment 5. Regulatory barriers 6. Regulatory approvals process 7. Pathways for special cases 8. Multiple funding options 9. Managed Access Programs 10. Concurrent HC/HTA reviews 11. Real world evidence 12. Centres of clinical expertise Canada’s Rare Disease Strategy (2015) 1. Improving early detection and prevention 2. Providing timely, equitable and evidence- informed care 3. Enhancing community support 4. Providing sustainable access to promising therapies 5. Promoting innovative research What CORD can propose for the federal election?

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  • 3. Kathleen Monk, Earnscliffe Strategy Group Geoff Turner, Bluesky Strategy Group Roberta Kramchynsky, StrategyCorp Moderators: Durhane Wong-Rieger, CORD Bill Dempster, 3Sixty Public Affairs CORD’s Mid-summer Super- panel and Town Hall!
  • 4. Tell your friends and colleagues who missed our webinars to visit CORD’s YouTube and SlideShare Channels! https://www.youtube.com/user/CORDRareDisorders https://www.slideshare.net/raredisorders THANK YOU FOR JOINING! OUR “SORRY TO INTERRUPT SUMMER HOLIDAYS” Webinar Series
  • 5. © 2020 3Sixty Public Affairs Inc. Political situation • Summer election call nearly a certainty despite PM’s consistent denials • Campaign teams, riding nominations, farewell speeches by exiting MPs, lawn signs ordered; COVID trends heading in the right direction • Potential election timing: week of Aug 16/23 -> election Sept 27 or Oct 4 • Election calculus complicated & campaigns matter: • Liberals aim to make gains in BC and Ontario and hold current seats in Quebec • NDP / Jagmeet Singh’s support rising which could split the left • Conservatives / O’Toole have higher “negatives” than other parties, but have not yet been in spotlight 5
  • 6. © 2020 3Sixty Public Affairs Inc. Election issues / positions that could be relevant 6 • National Pharmacare • Canada Drug Agency • Rare Diseases Drug Strategy ($500m/yr) • Rare Diseases Treatments ($500M/yr provinces-2019) • Reform PMPRB • Boost Canada Health Transfer • “New Deal” that includes pharmacare • National Pharmacare - basic formulary (2019)
  • 7. © 2020 3Sixty Public Affairs Inc. What will the ballot box issue be? 7 • COVID pandemic response? • Economic recovery? • Deficits? • Affordability (housing, gas, food, pharmacare, child care etc.)? • Environment? Source (graph): Nanos – National survey released July 2021. Nanos Research, RDD dual frame hybrid telephone and online random survey, June 30th to July 5th, 2021, n=1051, accurate 3.1 percentage points plus or minus, 19 times out of 20. Most important policy that will influence vote QUESTION: What will be the most important policy issue that will influence your vote if a federal election happens this coming Fall? [RANDOMIZE] ?
  • 8. How to translate CORD’s key asks into a high-impact election plan? Jumpstart Canada’s Rare Disease Drug Policy (2021) 1. Patient Empowerment 2. Canadian Rare Drug Agency 3. R&D incentives 4. Speed access to treatment 5. Regulatory barriers 6. Regulatory approvals process 7. Pathways for special cases 8. Multiple funding options 9. Managed Access Programs 10. Concurrent HC/HTA reviews 11. Real world evidence 12. Centres of clinical expertise Canada’s Rare Disease Strategy (2015) 1. Improving early detection and prevention 2. Providing timely, equitable and evidence- informed care 3. Enhancing community support 4. Providing sustainable access to promising therapies 5. Promoting innovative research What CORD can propose for the federal election?