Empowerment through Global Understanding & Collaboration:

Global Cancer Politics

Tanya Soldak, MD

NEW HORIZONS in TREATING CANCER

Sponsored by Novartis Pharma AG

Budapest, Hungary

23 – 25 June 2006

Connection between politics, policy, empowerment, influence and advocacy

Champions aren’t made in gyms. Champions are made from something they have deepinside 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 bestronger than the skill.” Muhammed Ali, Boxing Champion (1942 --

Policy

Health care system

Politics

Ministry of Health & high level Technical Experts

HospitalsHealth care providersDoctors Nurses

GovernmentElected Representatives Agreement on highest level

Formulate rules & guidelines

Take action

ADVOCACY

ADVOCACY

INFLUENCE, EMPOWERMENT

NGOs

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 approachSystem 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 advocacyGoal – 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

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 InfluenceLobby 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)