2. Second Cancer Patient Summit – Warsaw, 26-27 November 2005 Hildrun Sundseth, Head of EU Policy Nothing about us, without us! CHAMPIONING THE INTERESTS OF EUROPEAN CANCER PATIENTS Advocacy and Lobbying Hildrun Sundseth Head of EU Policy, ECPC

3. Second Cancer Patient Summit – Warsaw, 26-27 November 2005 Hildrun Sundseth, Head of EU Policy The European Parliament MEPs against Cancer 41 Members of the European Parliament All party informal group of MEPs from EU member states Committed to promoting action on cancer as EU priority Send a strong political signal that immediate and concerted action needed to reduce cancer rates and improve outcomes.

4. Second Cancer Patient Summit – Warsaw, 26-27 November 2005 Hildrun Sundseth, Head of EU Policy Agenda What is Advocacy, what Lobbying? Why Lobby? Building an Effective Lobbying Campaign Intelligence Gathering Strategy Tools Facts and Figures + Personal Stories Good Communication Some Examples from ECPC

5. Second Cancer Patient Summit – Warsaw, 26-27 November 2005 Hildrun Sundseth, Head of EU Policy What is Advocacy, what Lobbying ? Advocacy to speak on behalf of others, to plead a case, to champion a cause MUST HAVE: mission statement that reflects aims and objectives Lobbying is Advocacy directed at the political level to change the status quo, influence legislation and policy Communicate messages to legislators, policy makers, key stakeholders, forming political alliances

6. Second Cancer Patient Summit – Warsaw, 26-27 November 2005 Hildrun Sundseth, Head of EU Policy Why Lobby ? Public Health and Healthcare is highly political Health Ministry generally weak Healthcare seen as a cost instead of an investment Government budgets, priorities elsewhere Lobby to change thinking of Governments  Health is Wealth

7. Second Cancer Patient Summit – Warsaw, 26-27 November 2005 Hildrun Sundseth, Head of EU Policy Why Lobby ? Influence laws, policy development, investment in programmes to meet the needs of your organisation Raise awareness about your organisation Get your case on the political agenda Mobilise public opinion, rights and entitlements Mobilise members, board, volunteers and donors Attract media coverage, enhance public awareness

8. Second Cancer Patient Summit – Warsaw, 26-27 November 2005 Hildrun Sundseth, Head of EU Policy Identify Your Organisation’s aims and objectives Prioritize according to Urgency of need for solution/remedy Quantify in terms of impact on % of population Be prepared to explain how remedy can be achieved What are benefits to patients, society, economy, decision makers, politicians Allocate resources for campaign: staff, time, cost Building an Effective Campaign

9. Second Cancer Patient Summit – Warsaw, 26-27 November 2005 Hildrun Sundseth, Head of EU Policy Building an Effective Campaign Gather intelligence and develop necessary tools Stakeholder analysis  allies/opponents Understand the political process, dynamics Who makes decisions? What is timing? Where are windows of opportunity?

10. Second Cancer Patient Summit – Warsaw, 26-27 November 2005 Hildrun Sundseth, Head of EU Policy Building an Effective Campaign Understand the issues and agree on strategy Develop policy  position paper Argue with solid Facts and Figures Produce evidence: commission studies, Membership opinion surveys Suggest solutions: policy changes, legal amendments Develop effective Communication strategy Stay on message: consistency and persistence

11. Second Cancer Patient Summit – Warsaw, 26-27 November 2005 Hildrun Sundseth, Head of EU Policy Communication Strategy Ensure that Your Organisation speaks with one voice Develop messages tailor-made to specific audiences Send out the right message at the right time to the right person Produce press releases and post on website Organise letter writing campaigns Move from the Personal to the Professional But never forget to add the Human Face – your personal story Golden Rule of good Communication: clear arguments, “KISS” - Keep it simple and short

12. Second Cancer Patient Summit – Warsaw, 26-27 November 2005 Hildrun Sundseth, Head of EU Policy MEPs against Cancer 41 Members of the European Parliament All party informal group of MEPs from EU Member States Committed to promoting action on cancer as EU priority Send a strong political signal that immediate, concerted action needed to reduce cancer rates and improve outcomes.

13. Second Cancer Patient Summit – Warsaw, 26-27 November 2005 Hildrun Sundseth, Head of EU Policy The European Parliament

14. Second Cancer Patient Summit – Warsaw, 26-27 November 2005 Hildrun Sundseth, Head of EU Policy MAC Members

15. Second Cancer Patient Summit – Warsaw, 26-27 November 2005 Hildrun Sundseth, Head of EU Policy MAC Members

16. Second Cancer Patient Summit – Warsaw, 26-27 November 2005 Hildrun Sundseth, Head of EU Policy ECPC and Membership Letter Writing Campaign Date 1 June 2005 Dear Minister, I am writing to you in advance of the meeting on Friday, 3rd of June of the Council of Health Ministers in Luxembourg, which will discuss for the first time the new Public Health and Consumer Programme. The existing Public Health Programme takes a horizontal approach focusing primarily on a health determinants. The European Cancer Patient Coalition (ECPC) speaking for millions of European cancer patients and cancer survivors, across the European Union, warmly welcomes the proposal by the European Commission to include once more a disease-specific focus in the new programme. As you know, cancer kills 1 in 4 European citizens; and each year 10 million of new patients are faced with a cancer diagnosis. ECPC aims to give all cancer patients a voice in Europe. Our organisation was founded in September 2003 and currently has nearly 200 full members drawn from most EU Member States and represents patients with cancers ranging from the commonest types such as lung and colorectal cancer to the rarer cancers. As the Chair of the Steering Committee of ECPC representing millions of patients across the EU I personally know what it is like to be diagnosed with advanced cancer. I remember how it felt wondering if I would live to see my 3 year old son grow up. I was lucky to survive, but we need more than luck – good programmes and policies at national and European level. I therefore appeal to you on a professional and personal level to support the Commission’s initiative to include once again a disease-specific element in the newly merged Public Health and Consumer Yours sincerely, European Cancer Patient Coalition Lynn Faulds Wood (ECPC President)

17. Second Cancer Patient Summit – Warsaw, 26-27 November 2005 Hildrun Sundseth, Head of EU Policy Lobbying Keep your Eye on the Ball

18. Second Cancer Patient Summit – Warsaw, 26-27 November 2005 Hildrun Sundseth, Head of EU Policy Warsaw Declaration Opportunity to Lobby Join our Lobbying Workshop Thank you!