1 What makes a good SMC submission Barbara McLaughlan, Campaigns Manager RNIB John Legg, Director RNIB Scotland

2 Background to the Submission Introduction of Lucentis, a drug for wet Age-related Macular Degeneration (AMD) AMD causes a progressive, irreversible loss of central vision in older people Wet AMD is the most aggressive form of this disease and has significant public health implications

3 Homework Analyse medical and economic data Demonstrate patient experiences with the drug under appraisal Provide comparison with alternative treatments and best comparative care Evidence all aspects of the submission Seek expert involvement

4 Methodology Literature Review and Primary Research Telephone interviews with patients Patient Case Studies Impact analysis

5 Patient-centred Focus Effective use of case studies to illustrate points and bring the submission alive Select case studies well and keep them short to make clear points Do not use them exclusively to make your case Individual experiences have to be backed up by scientific evidence

6 Adopting the Right Approach Recognise your own expertise and contribution Guard against bias Avoid being antagonistic Present the whole picture

7 Involve Allies If possible, join forces with other patient organisations interested in having the same drug approved. It can only strengthen your voice

8 Putting it in Context Sight loss Patient impact Economic impact Health environment SMC approval

9 Sight Loss One in eight One in three Double by per cent plus of those registered Increases risk

10 Patient Impact “I was devastated when I was told I had Macular Degeneration” “I lost my job, my income, my identity as a teacher, my driving license, my social network, my house, my independence and I had sunk into deep depression whilst struggling to care for my family”

11 Economic Impact Increased usage of health services £237, billion 7.1 million 4 fold return

12 Scottish Vision Strategy

13 Health Environment Government policy drivers Public health priorities Resource pressure Competing demands Implementation realities

14 SMC Approval Creates a treatable condition Meets World and Scottish policy objectives Prevents thousands losing their sight Contributes to wider social concerns

15 SMC Refusal Patient impact Evidence check Others shoes Devils Advocate Restructure and tighten

16 Thank You “My general roundabout vision has improved” “It lets you continue life”