From today’s reality, to tomorrow’s ‘Vision for Lupus’ IFEMA Feria de Madrid 08:15 – 09:45 This event has been organised and funded by GSK 14 June 2019 Job number: NP-GBL-LPU-PPTX-190001 Date of preparation: June 2019
Welcome and introductions
Housekeeping Timings Audience interaction ▪ ▪ Today’s symposium will run Please submit questions via Slido throughout the symposium for an hour and a half – – Welcome and presentation To be addressed during the panel discussion (65 minutes); session at the end ▪ – Interactive panel discussion Questions will be posed to the audience throughout this symposium: (25 minutes) – Respond to questions via Slido Feedback Please kindly ensure all mobile ▪ Please complete the evaluation forms on your seats and hand them to a GSK representative phones are on silent on the way out 14 June 2019 3
Slido overview Share your thoughts Ask questions to be Go to slido.com and and opinion by voting answered during the enter the event code: in live polls #visionforlupus panel discussion 14 June 2019 4
RESULTS WILL APPEAR ON THE SCREEN Test question Where are you from? A. Europe B. North America C. South America D. Asia E. Australia F. Africa 14 June 2019 5
Agenda Time Session Speaker Dr Susan Mayor (Moderator) Welcome and Introduction 08:15 Dr Chiara Tani (Chair) Overview of A Vision for Lupus initiative and key findings Rheumatologist, University of Pisa, Italy Disease Awareness: Dr Patricia Cagnoli 08:30 What is needed, how and why? Rheumatologist, University of Michigan, US Integrated Service Delivery: Dr Chiara Tani (Chair) 08:45 The reality and what is possible Rheumatologist, University of Pisa, Italy Clinical Research: Professor Chris Edwards 09:05 Preparing for the future together Consultant Rheumatologist, University Hospital Southampton, UK Interactive panel discussion: Dr Susan Mayor (Moderator) and the 09:20 Your opportunity to engage the panel and share your experience Faculty Panel Closing remarks and call to action: Dr Chiara Tani (Chair) 09:40 What will you do to drive a change in lupus care? Rheumatologist, University of Pisa, Italy 14 June 2019 6
Speakers Dr. Chiara Tani Dr. Patricia Cagnoli Prof. Chris Edwards Rheumatologist, Rheumatologist, Rheumatologist, University of Pisa, Italy University of Michigan, US University of Southampton, UK Disclaimers: Chris Edwards = Honoraria, advisory boards, speakers bureau, research support from; Abbvie, BMS, Biogen, Celgene, Fresenius, Gilead, GSK, Janssen, Lilly, Mundipharma, Pfizer, MSD, Novartis, Roche, Samsung, Sanofi, UCB. Patricia Cagnoli = present and past as PI in clinical trials sponsored by BMS, Janssen , Gilead, Lilly, Celgene, AbbVie, GSK, Genentech. Chiara Tani = consultation fees from GSK Italia 14 June 2019 7
A Vision for Lupus Overview of the initiative and key findings Dr Chiara Tani (Chair), Rheumatologist, University of Pisa, Italy
The Vision for Lupus Steering Committee In March 2018, GSK convened a Global Multidisciplinary Steering Committee of lupus experts to discuss the future Vision for Lupus Prof. David D’Cruz , Alain Cornet, Dr. Patricia Cagnoli, Neil Betteridge, Dr. Chiara Tani, Duane Peters, Lupus Patient, General Secretary, Rheumatologist, Patient Engagement Rheumatologist, Senior Communications Anonymous Consultant Rheumatologist, Lupus Europe iv Expert v University of Michigan, University of Pisa, Strategist at the Lupus Guy’s and St Thomas’ Hospital, US iii Italy ii Foundation of America UK i Inc. and Staff Coordinator for the World Lupus Federation iv i Consultancy fees received from Eli Lilly, GSK, Human Genome Sciences, Aspreva, Bristol-Myers Squibb, Actelion and Teva. He has also participated in clinical trails sponsored by these companies; ii Consultancy fees received from GSK Italy; iii Consultancy fees received from GSK and Crescendo; iv GSK has provided financial support to the World Lupus Federation, Lupus Foundation of America and Lupus Europe; v Consultancy fees received from Amgen, the Global Alliance for Patient Access, Grunenthal, Heart Valve Voice, Lilly, Pfizer, Roche, Sanofi Genzyme, Sanofi Regeneron. GSK conceived, developed and led the “A Vision for Lupus” report in collaboration with a Global Steering Committee who receiv ed a fee for their services. 14 June 2019 9
The Vision for Lupus mission The Vision for Lupus Steering Committee’s mission was to: ▪ Consider current gaps and inconsistencies in care for people with lupus ▪ Develop patient-centred calls to action to improve the quality of care ▪ Outline how implementing these calls to action could make a difference to people with lupus What are the current gaps and What do we want lupus care And, how do we inconsistencies in lupus care? to look like in the future? get there? 14 June 2019 10
The Vision for Lupus : gaps and inconsistencies in care and calls to action Where are the gaps and inconsistencies? What are the calls to action? • Raise awareness of lupus amongst key audiences including the Awareness of lupus general public, people with lupus, their families, carers and primary care doctors • Improve access to specialist and multidisciplinary lupus clinics Integrated service to ensure people with lupus are receiving quality care that addresses delivery all aspects of this complex, multisystem disease • Encourage people with lupus to consider participating in clinical research, raise awareness of ongoing clinical trials and facilitate Clinical research access to clinical trial research enabling people with lupus to make autonomous decisions in the management of their condition 14 June 2019 11
RESULTS WILL APPEAR ON THE SCREEN 1. Question to the audience What do you think are the biggest barriers to quality lupus care? A. Lack of awareness amongst the public and healthcare professionals B. Misinformation online about how to identify / manage lupus Multidisciplinary aspects of lupus care are not ‘joined - up’ C. D. Limited access to emotional, psychological and social support E. Barriers to participation in clinical research 14 June 2019 12
Disease Awareness What is needed, how and why? Dr Patricia Cagnoli, Rheumatologist, University of Michigan, US
Disease awareness: Gaps and inconsistencies Patients and families often unsure Healthcare professionals General public often unaware of lupus and its complications 1 what to expect , and online have short consultation times, misinformation may contribute lack of disease recognition and to misunderstandings 4 out-of-date information 5 Invisible symptoms and disease fluctuations may lead to lack Poor adherence, treatment 70% initially misdiagnosed 6 and of empathy for patients and affect failure and adverse events 5 diagnosis delays of up to 3.5 years 7,8 mental wellbeing 2,3 1. World Lupus Federation, World Lupus Day International Survey (2018). https://worldlupusdayorg.files.wordpress.com/2019/05/key-survey-findings-2018-05-09-1.pdf 2. World Lupus Federation, Lupus Knows No Boundaries E-Report. (2017) Available at; https://worldlupusdayorg.files.wordpress.com/2019/05/lupus_knows_no_boundaries_e-report_en.pdf Last accessed June 2019 3. World Lupus Foundation 2019 survey. Available at: https://worldlupusdayorg.files.wordpress.com/2019/05/top-line-global-survey- 14 June 2019 14 data.pdf 4. Neville, C., D. Da Costa, C. Mill, M. Rochon, J. A. Avina-Zubieta, C. A. Pineau, D. Eng and P. R. Fortin. “The needs of persons with lupus and health care providers: a qualitative study aimed toward the developmen t of the Lupus Interactive Navigator.” Lupus 2014;23(2): 176-182; 5. Comment from Vision for Lupus Steering Committee 6. Kent, T., A. Davidson, D. Newman, G. Buck and D. D’Cruz. “Burden of illness in systemic lupus erythematosus: results from a UK patient and carer online survey.” Lupus 2017;26(10): 1095-1100; 7. Rees, F., M. Doherty, P. Lanyon, G. Davenport, R. D. Riley, W. Zhang and M. J. Grainge . “Early clinical features in systemic lupus erythematosus: Can they be used to achieve earlier diagnosis? A risk prediction mod el.” Arthritis Care Res. 2017;69(6): 833-841; 8. Al Sawah S, Daly RP, Foster S, et al. Understanding Delay in Diagnosis, Access to Care, and Satisfaction with Care in Lupus: Findings from a Cross-Sectional Online Survey in the United States. Presented at the European League Against Rheumatism (EULAR) 2015 Annual Conference. June 2015. Rome, Italy
Disease awareness: Calls to action from the Vision for Lupus report Raise awareness of lupus amongst key audiences Short-term calls to action Long-term calls to action Train patient advocates to provide Cultivate a group of public figures and/or celebrities to talk about accurate information on lupus lupus (i.e. Julian Lennon) Improve education around the Develop a seal of approval for websites psychological manifestations of lupus Encourage positive interaction between people with lupus Disseminate information to primary care doctors 14 June 2019 15
RESULTS WILL APPEAR ON THE SCREEN 2. Question to the audience As a healthcare professional, how do you like to receive ongoing professional education and training? A. Education through journals, i.e. produced by organisations like the Royal College of GPs in the UK B. Training courses / events provided at specialist centres C. Informal small group discussions D. Symposia events E. Online education, i.e. IME courses F. Learning directly from colleagues 14 June 2019 16
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