Patient Activism Charles Gore

Activism – why? HIV shows it works in getting resources Cancer shows HIV is not a special case Resources are limited Health is as political as any other part of government In the UK, NHS is an idea Most devolved area of government

Activism – how? Direct lobbying of government Use of media to pressure government Getting support of elected representatives Understanding what’s in it for them Partnering with other groups (e.g. people who inject drugs, cancer, HIV) “If you think you’re too small to have an impact, try going to sleep with a mosquito in the room.” Anita Roddick

Activism in Scotland Those infected through the NHS, primarily the haemophilia community The clinical community, e.g. The Edinburgh HCV Consensus Conference, and HPS The Hepatitis C Resource Centre and The Hepatitis C Trust set up in Scotland Cross party group of MSPs The Scottish Hepatitis C Action Plan and its funding

Hepatitis activism globally 2007 World Hepatitis Alliance formed to run World Hepatitis Day 2008 Need to get a WHO resolution to make WHD official 2009 activism gets viral hepatitis onto WHO agenda 2010 resolution makes WHD official 2012 Alliance highlights lack of progress 2013 Alliance documents lack of progress for WHO 2013 Alliance holds meeting at World Health Assembly to press for more action 2014 new resolution proposed

Hepatitis activism globally WHO EB134.R18 (OP) 2. REQUESTS the WHO’s Director-General: (3) in consultation with Member States, to develop a system for regular monitoring and reporting on the progress in viral hepatitis prevention, diagnosis and treatment; (7) to examine the feasibility of and strategies needed for the elimination of hepatitis B and hepatitis C with a view to potentially setting global targets; (10) to lead a discussion and work with key stakeholders to facilitate equitable access to quality, effective, affordable and safe hepatitis B and C treatments and diagnostics; (OP) 3. CALLS upon all relevant United Nations funds, programmes, specialized agencies and other stakeholders: (1) to include prevention, diagnosis and treatment of viral hepatitis in their respective work programmes and work in close collaboration; (2) to identify and disseminate mechanisms to assist countries in the provision of sustainable funding for prevention, diagnosis and treatment of viral hepatitis. Charity Registration No. 1104279 Scotland Charity Registration No. SCO39914

Activism in Scotland – continued… Scotland has made a big investment in HCV Need for continued commitment Celebrate Scotland’s achievements Need to regularly bring the human impact of having/clearing HCV to MSPs’ & media attention Need to sell everyone on the concept of elimination

Activism in Scotland – continued… THANK YOU