Doug Ulman's Presentation for the UICC Global Cancer Congress

Mobilizing Survivors and Advocates Doug Ulman, President and CEO LIVESTRONG

Today, cancer is the #1 killer globally. The Facts

“Most of the world is still struggling to “Cancer is not find solutions for discussed around AIDS, TB and the world. It is malaria. Cancer has not a priority on not been the main the global agenda” concern” “One of the most “Cancer has a big important elements is to stigma outside the bring people together. U.S. People do not Specifics might differ per talk about their country, but there needs cancer” to be someone or something that brings together the sum of the parts” Basis for LIVESTRONG Global Cancer Campaign

Basis for LIVESTRONG Global Cancer Campaign

Build international awareness Empower cancer survivors and reduce the stigma and silence associated with cancer Global Cancer Campaign Launch: Clinton Global Initiative Annual Meeting Mobilize September, 2008 a grassroots movement Framework for LIVESTRONG Global Cancer Campaign

Building International Awareness

The Call for Global Commitments to the Fight Against Cancer Building International Awareness

LIVESTRONG Global Cancer Summit Building International Awareness

August 2009, at the close of the Summit: • 92% felt more aware that they are an important part of the global fight against cancer • 86% felt empowered with new ways of engaging others August 2010, one year later: • More than 90% created partnerships they plan to continue • 89% said that the Summit increased their ability to achieve their commitment to fighting cancer Building International Awareness

Bringing together stakeholders from around the globe and across the cancer control continuum can lead to impactful, tangible results: • Formation of new Global Task Force on Expanded Access to Cancer Care and Control in Developing Countries (support of Dana Farber Cancer Institute, Harvard Global Equity Initiative, Harvard Medical School, Harvard School of Public Health and Honorary Co-Presidents Her Royal Highness Princess Dina Mired and Lance Armstrong) • Formation of new body tackling cancer in Africa- AFRICaN • Partnership between World Palliative Care Alliance and WHO to develop Atlas of Palliative Care worldwide • Catalyzed partnership between Breast Health Global Initiative and PACT who are joining forces to implement a distance learning curriculum in Africa which will include new modules on breast cancer medicine • Collaboration between Cancer Diseases Hospital, Zambia and Surgeons Overseas who offered training of Zambian surgeons in esophageal stenting • Among many, many others… Building International Awareness

Through these partnerships and commitments, what did we collectively achieve on the ground this year? As a global cancer community, we have affected the lives of millions of people around the world and have reached hundreds of millions of people with educational and awareness messages. Building International Awareness

Empowering Cancer Survivors and Reducing Stigma

Pilot projects in Mexico and South Africa in 2010-2011 Survivor Empowerment Anti-Stigma Initiative Initiative • Potential for transformational change for cancer survivors and people affected by cancer • Catalyze and support collaboration among local organizations through initiative partnerships • Work to build replicable, sustainable models • Empower cancer survivors to take action Empowering Cancer Survivors and Reducing Stigma

Survivor Empowerment Initiative • Designed to support a national call to action • Prepare advocates to convene a Survivor Forum which brings together key stakeholders to discuss crucial issues at a national level • Empower survivors to share their stories and speak out • Places the survivor at the core of the system to shift discourse and bring visibility to gaps in cancer control • Highlight need for cancer to be a stronger priority on a country’s health agenda Empowering Cancer Survivors and Reducing Stigma

Cancer stigma is a global challenge Italy: Population needs to Russia: Parents believe cancer for correct lifestyles. children = incurable; people put off France: “Taboo” of cancer; diagnosis for fear of hearing the worst. cancer is “scary” and deadly The word cancer is a synonym for fear disease; “demonized” points of and hopelessness even as specialists view exist for cancer; cancer survivors are heroes assure it is no longer a death sentence. Mexico: Cancer is a “death sentence” China: Women when not detected “apprehensive” about early enough checking for breast cancer; elderly believe you can get cancer from other people; some cling Brazil: People to superstition that cancer “suffer” from cancer. is a punishment from the deities. India: Everyone with Argentina: Women cancer dies; cancer is are “afraid” to get South Africa: Some still think most powerful “brand” Japan: Cancer is cancer; they “fear” cancer = death sentence or of death in mainstream “troublesome” and results so avoid the that cell phones cause cancer; cinema; women often provides “conflicting” tests. still need early detection. too shy to seek help feelings. when a lump is discovered. Empowering Cancer Survivors and Reducing Stigma

Anti-Stigma Initiative • Reduce stigma through culturally- relevant and targeted messaging • Focus on empowering survivors to share their stories • Two-pronged approach: • Awareness raising at national level • Message reinforcement at community level To learn more about our research on Stigma and Silence around the world, see: http://www.livestrong.org/What-We- Do/Our-Approach/Reports-Findings Empowering Cancer Survivors and Reducing Stigma

Mobilizing a Grassroots Movement

LIVESTRONG Leaders in Resources and tools for 45 countries individuals to take action Robust social media: Empowering survivors to Facebook, Twitter, YouTube, share their stories Flickr, LIVESTRONGblog.org Mobilizing a Grassroots Movement

• Continue deeper organizational and institutional collaboration • Share more resources, knowledge, skills • Increased governmental action and public- private partnerships • Increased accountability and transparency across stakeholder groups • Continue to inspire and engage survivors, advocates, communities in meaningful ways • Leverage timely opportunities – 2011 UN Summit on non-communicable diseases What next?

Doug Ulman's Presentation for the UICC Global Cancer Congress

by LIVESTRONG on Aug 19, 2010

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