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Empowerment through Global Understanding & Collaboration: Global Cancer Politics NEW HORIZONS in TREATING CANCER Sponsored by Novartis Pharma AG Budapest, Hungary 23 – 25 June 2006 Tanya Soldak, MD Connection between politics, policy, empowerment, influence and advocacy Government Elected Representatives Ministry of Health & high level Technical Experts Hospitals Health care providers Doctors Nurses Politics Agreement on highest level Policy Formulate rules & guidelines Health care system NGOs Take action 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 -- 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 . 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. 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 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 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 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 national cancer 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. 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 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) 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) Improving Knowledge, Improving Attitude – key for advocacy Goal – to get information and involve patient in decisionmaking 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 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 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). 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)