12th Annual
Life Science Strategic Patient Advocacy Engagement Conference
April 18-19, 2023 | Philadelphia, PA
12th Annual
Life Science Strategic Patient Advocacy Engagement Conference
April 18-19, 2023
Philadelphia, PA
Strengthening Patient Advocacy Relations by Bridging the Gap between Industry and Local Communities with a Focus on Diversification in Clinical Trials, Improved Health Literacy, and Solutions to Patient Affordability
Jaye Bea Smalley
Head of Patient Advocacy
IMMUNOVANT INC
Caryl Harris
Co-Founder & Executive Director
AVERY’S HOPE
Kristina Davidson
Senior Director, Patient Advocacy
HORIZON THERAPEUTICS
Nathaniel Brown
Director of Advocacy
CHRONIC DISEASE COALITION
Amy Grover
Senior Director, Patient Advocacy
CATALYST PHARMACEUTICALS
Zeena Chi
Senior Manager, Advocacy Relations
GENENTECH
Amanda Sowinski
Sr. Manager, Global Pompe Lead, Patient & Professional Advocacy
AMICUS THERAPEUTICS
Kim Schofield
Patient Advocate
LUPUS FOUNDATION OF AMERICA
Lisa Butler
Executive Director
GBS/CIDP FOUNDATION INTERNATIONAL
Todd Bledsoe
Executive Director, Patient Engagement and Advocacy
NEUROCRINE BIOSCIENCES
Rommie L. Carnevale III
Vice President
SMITHSOLVE
Katie Burns
Executive Vice President and Managing Director
SMITHSOLVE
Vivian Fernandez
Executive Director, Patient Advocacy
REGENXBIO INC
Wendy Nickel
President
HEALTH CARE IMPROVEMENT FOUNDATION
Courtney Firak
Patient Advocacy Professional
John Hoffman
Policy & Advocacy
JANSSEN
Bill Caddell
Senior Manager/Regional Lead
Patient Advocacy Relations
GENENTECH
Terri Klein
President and CEO
NATIONAL MPS SOCIETY
Robert Popovian
Chief Science Policy Officer
GLOBAL HEALTHY LIVING FOUNDATION
Price Wooldridge
Board President
THE LAMBERT-EATON LEMS FAMILY ASSOCIATION
Sarah Friedhoff
Director of Patient Advocacy
ASTRIA THERAPEUTICS
Katie Creme Henry
Patient Advocacy Relations
GENENTECH, INC.
Jessica Cerullo
Senior Vice President
JPA HEALTH
Katherine Perez
Vice President – Head of Global Patient Advocacy and Policy
ARGENX
8:00 REGISTRATION & WELCOME COFFEE
8:50 CHAIRPERSON’S OPENING REMARKS
9:00 OPENING ICE BREAKER: BUILDING NEW CONTACTS, SHARING BACKGROUNDS, AND DISCUSSING OPPORTUNITIES WITHIN THE PATIENT ADVOCACY LANDSCAPE
The opening ice breaker will kick-off the event with an opportunity for all participants to move around the conference room and meet new delegates by engaging in short and targeted discussions. In this interactive session, participants are encouraged to meet with peers from different companies and briefly share insight into professional backgrounds, shedding light on the diversity of profiles in the participating audience and kicking off the program networking platform with an opportunity to build new contacts at the very start of the event.
9:45 METHODS FOR IMPROVING CLINICAL TRIAL ACCESSIBILITY TO PATIENTS WITH SPECIFIC NEEDS
• Exploring impairments and restraint challenges that keep patients from trials
• Considerations for advocates to lift access barriers and improve patient engagement
• Examining approaches to meet the appropriate accommodations for patients
Amanda Sowinski, Sr. Manager, Global Pompe Lead, Patient & Professional Advocacy
AMICUS THERAPEUTICS
10:30 COFFEE & NETWORKING BREAK
11:00 MOVING FROM PATIENT CENTRICITY TO PATIENT INCLUSIVITY
• Discussions on patient centricity and its paternalistic and objectifying impact
• Moving toward patient inclusive language and its relationship with DEI
• Examining unintentional ableism and its effects on patient communities
Courtney Firak, Patient Advocacy Professional
11:45 HEALTH LITERACY: DEVELOPING CLEAR, RELATABLE, AND ACTIONABLE CONTENT
• The many components of health literacy
• Reflecting on audience demographics, communications habits and expectations
• Visual storytelling for more impactful and accurate content
• Creating demand driven and accessible content through community partnerships
• Planning for dissemination and tracking for an effective rollout
Rommie L. Carnevale III, Vice President
SMITHSOLVE
Amy Grover, Senior Director, Patient Advocacy
CATALYST PHARMACEUTICALS
Price Wooldridge, Board President
THE LAMBERT-EATON LEMS FAMILY ASSOCIATION
12:30 LUNCHEON FOR ALL SPEAKERS, SPONSORS & ATTENDEES
1:30 SMALL GROUP DISCUSSIONS – TECHNIQUES FOR ACQUIRING FINANCIAL RESOURCES FOR PATIENTS AND THEIR FAMILIES
• Relationship-building with hospitals, social workers, and social security
• Financial strategies to develop effective presentations that make an impact
• Efficient communication streams to get information to patients and family
Caryl Harris, Co-Founder & Executive Director
AVERY’S HOPE
2:15 CASE STUDY DISCUSSION: EXAMINING ADVOCACY’S INVOLVEMENT IN SUPPORTING CLINICAL TRIAL RECRUITMENT
This session will present and analyze a scenario to identify challenges and best practices for ensuring cross-functional collaboration within an organization, managing expectations, optimizing external communications, and working with advocacy organizations. You will hear from a seasoned advocacy organization leader about the PAO role in clinical trial awareness and working with industry partners.
Vivian Fernandez, Executive Director, Patient Advocacy
REGENXBIO INC
Katie Burns, Executive Vice President and Managing Director
SMITHSOLVE
Terri Klein, President and CEO
NATIONAL MPS SOCIETY
Todd Bledsoe, Executive Director, Patient Engagement and Advocacy
NEUROCRINE BIOSCIENCES
3:00 COFFEE & NETWORKING BREAK
3:30 PANEL DISCUSSION: CREATING PATIENT ADVOCACY SYNERGIES AND PARTNERSHIPS TO BOOST THERAPY-SPECIFIC PROGRESS
• Practical approach to creating a partnership, step by step
• Needs specific to each entity: HCPs, industry, patients and association
• Establishing combined efforts to reach desired outcomes
• Encountered pitfalls and solutions to keep moving forward
• Lessons learned in partnership building and continuous improvement
Nathaniel Brown, Director of Advocacy
CHRONIC DISEASE COALITION
Bill Caddell, Senior Manager/Regional Lead
Patient Advocacy Relations
GENENTECH
4:15 PANEL DISCUSSION: STRATEGIES TO ADVANCING DISEASE AWARENESS
• Innovative models that positively impact today’s society
• Best practices for how industries should raise awareness
• Approaches to engage the advocacy community to accomplish goals
Jaye Bea Smalley, IMMUNOVANT INC
Lisa Butler, GBS/CIDP FOUNDATION INTERNATIONAL
Jessica Cerullo, JPA HEALTH
5:00 Closing Remarks & End of Day 1
Day Two Agenda
Wednesday, April 19
SMALL GROUP DISCUSSIONS8:00 REGISTRATION & WELCOME COFFEE
8:20 CHAIRPERSON’S OPENING REMARKS
8:30 PANEL DISCUSSION – PATIENT AFFORDABILITY: SOLUTIONS TO MANAGING AND REDUCING FINANCIAL EXPOSURE
• Clarifying the influx and nature of expenses billed to the patient
• Techniques for dealing with rising out-of-pocket costs
• Solutions for funding and helping struggling families
Kim Schofield, LUPUS FOUNDATION OF AMERICA
Robert Popovian, GLOBAL HEALTHY LIVING FOUNDATION
John Hoffman, JANSSEN
9:15 SMALL GROUP DISCUSSIONS: STEPS TO INCREASE WORK COLLABORATION WITH CROSS-FUNCTIONAL PARTNERS
Companies must establish relationships and ongoing conversations with colleagues to help drive long-term change and build trust among different teams. When hurdles arise relating to the FDA, approaches are needed to proactively seek opportunities with regulatory colleagues to talk through the patient’s voice and perspective. Practical steps will include finding opportunities for collaboration, establishing systems and structures to ensure advocacy perspectives, developing a work plan, and using tools leveraged by advocate leaders for increased development processes.
Jaye Bea Smalley, IMMUNOVANT INC
10:00 COFFEE & NETWORKING BREAK
10:30 POST-PANDEMIC APPROACHES TO MAXIMIZING ENGAGEMENT WITH PATIENTS
• Clarifying the impact of covid on engagement avenues
• Mastering the development and execution of activities:
» In-person
» Virtually
» Asynchronously
• Identifying and addressing specific populations’ preferences
• Methods to maintaining engagement in the long term
Katie Creme Henry, Patient Advocacy Relations
GENENTECH, INC.
11:15 DIVERSITY, EQUITY, AND INCLUSION: METHODS TO ENSURE REPRESENTATION WITHIN COMPANY LEADERSHIP
Diversity efforts are needed within companies that engage patients and caregivers in communities with varied lived experiences. Advocacy professionals strive to help companies reflect on their leadership as they reach out to underserved communities. Topics include working with the FDA and other agencies to stress diversity efforts, hiring leadership that relates to the served community, establishing sites for clinical research, and eliminating barriers surrounding health literacy.
Katherine Perez, Vice President – Head of Global Patient Advocacy and Policy
ARGENX
12:00 LUNCHEON FOR ALL SPEAKERS, SPONSORS & ATTENDEES
1:00 PANEL DISCUSSIONS: IDENTIFYING COMPLIANCE CHALLENGES AND EXPEDITING REMEDIATION STRATEGIES
• Review of most common legal roadblocks to advocacy initiatives
• Remaining abreast of legal updates influencing advocacy efforts
• Hand in hand work with in-house and external compliance teams
• Swiftly managing solutions to regain and/or maintain compliance
Sarah Friedhoff, Director of Patient Advocacy
ASTRIA THERAPEUTICS
Katie Creme Henry, Patient Advocacy Relations
GENENTECH, INC.
1:45 MEASURING THE PATIENT VOICE IN PROGRAM DEVELOPMENT THROUGH THE LIFE CYCLE
• Working with internal stakeholder to develop meaningful metrics
• Discipline strategies relating to including the patient voice
• Approaches to getting a baseline relating to program development
Kristina Davidson, Senior Director, Patient Advocacy
HORIZON THERAPEUTICS
Zeena Chi, Senior Manager, Advocacy Relations
GENENTECH
2:30 DEVELOPING HEALTH LITERATE, CULTURALLY SENSITIVE MATERIALS FOR PATIENTS IN PURSUIT OF HEALTH EQUITY
• Establishing the premise of healthy literacy to achieve health equity
• Perspectives on translating material when making presentations
• Ensuring sensitive material resonates with patients
• Exploring cultural humility and health literacy
Wendy Nickel, President
HEALTH CARE IMPROVEMENT FOUNDATION
3:15 Closing Remarks & Conference Conclusion
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Previous Attendees Include:
Account Director, SIREN INTERACTIVE
Associate Director Advocacy Relations, BIOGEN IDEC
Associate Director Patient Advocacy, Multiple Sclerosis, GENZYME
Associate Director, Advocacy Relations, GENENTECH
Associate Director, Patient Advocacy, BIOMARIN PHARMACEUTICAL
Communications Manager, LUNDBECK
Deputy Director of Stakeholder Engagement, PCORI
Director Patient Advocacy, MILLENNIUM PHARMACEUTICALS
Director, Advocacy, CELGENE
Director, Alliance Development, SHIRE HGT
Director, Commercial Excellence, BAXTER
Executive Director, DYSTONIA MEDICAL RESEARCH FOUNDATION
Executive Director, LEUKEMIA & LYMPHOMA SOCIETY
Head of North America, Genetic Diseases, GENZYME
Patient Advocacy Relations, GENENTECH
Patient Advocate, LUPUS FOUNDATION OF AMERICA
Patient Engagement Liaison, US Neurology, PTCBIO
President, GLOBAL HEALTHY LIVING FOUNDATION
President, Health Care Improvement Foundation, CC ALLIANCE
President, MARK KRUEGER & ASSOCIATES, INC.
Senior Director Regulatory Affairs, GENZYME
Senior Director, Global Patient Advocacy, SANOFI GENZYME
Senior Director, Patient Advocacy, INTERCEPT PHARMACEUTICALS
Senior Manager, Grant Management Department, ABBVIE
Senior Manager, Patient Advocacy, HORIZON THERAPEUTICS
Senior Vice President, JPA
Senior Director, Global Patient Advocacy, BIOMARIN
Strategic advocacy relations & stakeholder engagement, MEI PHARMA
VP-Global Head Patient Experience, ASTRAZENECA
VP-Head of Global Patient Advocacy and Policy, ARGENX
VP, Global Patient Advocacy, GENZYME
VP, Patient Advocacy, CELGENE
VP and Head, Global Medical Advocacy, BRISTOL-MYERS SQUIBB
VP, Patient Advocacy & Policy, OVASCIENCE
….And Many Many More
Who should attend:
VP’s, Directors and Managers of:
• Patient Advocacy Relations
• Patient Advocacy Operations
• Patient Education Liaison
• Patient Assistance Programs (PAPs)
• Patient Access Programs
