Empowering Global Cancer Advocacy: New Horizons in Treating Cancer

1. Empowerment through Global Understanding & Collaboration: Global Cancer Politics NEW HORIZONS in TREATING CANCER Sponsored by Novartis Pharma AG Tanya Soldak, MD Budapest, Hungary 23 – 25 June 2006

2. Connection between politics, policy, empowerment, influence and advocacy Champions aren’t made in gyms. Champions are made from something they have deep inside them…a desire, a dream, a vision. They have to have last-minute stamina, they have to be a little faster, they have to have the skill and the will. But the will must be stronger than the skill.” Muhammed Ali, Boxing Champion (1942 -- Government Elected Representatives Politics ADVOCACY Agreement on highest level ADVOCACY Policy Ministry of Health & high level Technical Experts Formulate rules & guidelines Health care system INFLUENCE, EMPOWERMENT Hospitals Health care providers Doctors Nurses NGOs Take action

3. Health Policy: A definition • Health policy is the way nations, states, cities and communities distribute resources to competing interventions and competing populations • Health policy in cancer reflects • how and to whom • health care resources are distributed to address burden of different types of cancers .

4. Global perspective for cancer policy - WHO recommendations • WHO report - National cancer control programs: policies and managerial guidelines – 2nd ed., 2002 • Worldwide, there are over 10 million new cases of cancer and more than 6 million deaths from cancer annually. • WHO formulated the goal of Health Cancer Policy (as the following: 1) a reduction in incidence and mortality of cancer 2) an improvement in the quality of life of cancer patients and their families.

5. Health policy for cancer: Key Elements • Effective: producing an intended result (reduction in incidence and mortality of cancer as well as an improvement in the quality of life ) • Comprehensive: health care system integrated approach and broad in scope with details of care • Evidence based: apply research to the practice • Patient centered: focus on improving patient quality of life by addressing other needs including: • Emotional • Physical • Financial

6. Advocacy definition and role • Advocacy: The act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support • Cancer Advocate: One who actively promotes the implementation of good health policy for cancer, so that People Living With Cancer may obtain adequate treatment and quality of life “If I am not for myself, who will be for me? And if I am only for myself, what am I? And if not now, when? Rabbi Hillel

7. Effective Advocacy: Common Barriers • Lack of resources – pharmaceuticals, lab tests, qualified health care providers • Inadequate cancer policy for some types of cancer treatments • policy should address cancer as a long-term chronic disease • Lack of information and paternalistic attitude towards cancer patients

8. Effective Advocacy Strategies: Cancer Advocacy Organization 3 level approach I. Politics level (agenda setting) Congress, government elected representatives • Legislation changes II. Policy level (formulation) Ministry of Health: • Promotion of comprehensive nationalcancer control programs • Academics (technical experts from teaching and tertiary hospitals): • Understand and Promote evidence-based interventions. Develop practical guidelines on disease and programmed management. • Research, clinical trials.

9. Effective Advocacy Strategies: Cancer Advocacy Organization 3 level approach System level (practitioner/patient at hospitals and communities) • Advocate for effective treatment and support for patient-centered health care – “struggle” on behalf of every patient • Ensure that providers and other stakeholders adopt national cancer health policy

10. Effective Advocacy Strategies: Cancer Advocacy Organization • Building international networks & partnerships (will benefit for all 3 levels) Example: Belarus -- International networking between US NGOs, European donors and others, uniting international voices of cancer patients, their families, and caregivers has proven to be a powerful tool for improvements in • Attitude • Knowledge • Practice • Policy • System • Services “I not only use all of the brains I have, but all I can borrow.” Woodrow Wilson, 28th President of the United States (1856 – 1924)

11. Success with 3 Level Approach – Breast Cancer Case Study • This approach can be applied to different type of cancers advocacy: • Breast Health Global Initiative developed evidence based guidelines for countries with limited resources www.fhcrc.org/science/phs/bhgi/ • International collaboration with UICC, WHO, International Atomic Energy Agency, National Cancer Institute, Corporate Partners – Amgen, Astra Zeneca, Bristol Mayers, Pfizer, Non Governmental Organizations (NGOs)

12. Improving Knowledge,Improving Attitude – key for advocacy Goal – to get information and involve patient in decision-making by providing accurate, relevant and understandable information. Information Outlets: • Attending conferences for cancer advocates • Communication with health care providers about research and medical innovations – communication skills • International, country or community cancer guides • http://www.cancer.gov - clinical trials • http://www.cancer.com/shared/friends.jsp • www.leukemia-lymphoma.org • http://www.plwc.org/portal/site/PLWC - ASCO's People Living With Cancer website

13. Management of CML disease in countries with limited resources • Post-communist transitional health care systems • Belarus • 600 patients with CML • 25 have access to Glivec (10 patients recently got • access due to Chernobyl 20th Anniversary action) • Lab diagnostic: Low accessibility to cytogenic • tests - Philadelphia chromosome detection

14. Management of CML disease in countries with limited resources • Central Asia (Kyrgyzstan and Tajikistan): • 450 patients with CML – KG • 82 patients with CML -- TJ • 5 have access to Glivec • Lab diagnostic: no capacity in the country • (When possible, lab testing is performed in other • countries).

15. Advocacy Outcomes:Empowerment and Influence Lobby policy makers for changes in cancer policy and to make resources available Example: Belarus: Clinical protocols were developed and bone marrow transplantation centers were opened Practitioner education on latest research findings and dissemination of results through private/public partnership (NGO - pharmaceutical company) Example: Belarus: Lecture series at teaching hospitals to promote practice of latest evidence based methods Patient education to clearly explain scientific developments, enabling patients to gain more control of their destinies Example: Belarus – brochures for patients on lay language “Words without actions are the assassins of idealism.” Herbert Hoover, President, Statesman & Humanitarian (1874 – 1964)