Mobilizing Survivors and AdvocatesDoug Ulman, President and CEOLIVESTRONG

Today, cancer is the #1 killer globally.

The Facts

Basis for LIVESTRONG Global Cancer Campaign

“Cancer is not discussed around the world. It is not a priority on

the global agenda”

“Most of the world is still struggling to find solutions for

AIDS, TB and malaria. Cancer has not been the main

concern”

“Cancer has a big stigma outside the U.S. People do not

talk about their cancer”

“One of the most important elements is to bring people together.

Specifics might differ per country, but there needs

to be someone or something that brings

together the sum of the parts”

Basis for LIVESTRONG Global Cancer Campaign

Framework for LIVESTRONG Global Cancer Campaign

Build international awareness

Empower cancer survivors and reduce

the stigma and silence associated

with cancer

Mobilize a grassroots movement

Global Cancer Campaign Launch:Clinton Global Initiative Annual MeetingSeptember, 2008

Building International Awareness

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.

Empowering Cancer Survivors and

Reducing Stigma

Pilot projects in Mexico and South Africa in 2010-2011

Empowering Cancer Survivors and Reducing Stigma

• 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

Survivor Empowerment Initiative

Anti-Stigma Initiative

Survivor Empowerment Initiative

Empowering Cancer Survivors and Reducing Stigma

• 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

Cancer stigma is a global challenge

Japan: Cancer is “troublesome” and

provides “conflicting” feelings.

Mexico: Cancer is a “death sentence”

when not detected early enough

Brazil: People “suffer” from cancer.

India: Everyone with cancer dies; cancer is most powerful “brand” of death in mainstream cinema; women often too shy to seek help

when a lump is discovered.

Italy: Population needs to correct lifestyles.France: “Taboo” of cancer;

cancer is “scary” and deadly disease; “demonized” points of view exist for cancer; cancer survivors are heroes

Argentina: Women are “afraid” to get cancer; they “fear” results so avoid the

tests.

China: Women “apprehensive” about checking for breast

cancer; elderly believe you can get cancer from other people; some cling to superstition that cancer is a punishment from the

deities.

Russia: Parents believe cancer for children = incurable; people put off

diagnosis for fear of hearing the worst. The word cancer is a synonym for fear and hopelessness even as specialists

assure it is no longer a death sentence.

South Africa: Some still think cancer = death sentence or that cell phones cause cancer; still need early detection.

Empowering Cancer Survivors and Reducing Stigma

Anti-Stigma Initiative

Empowering Cancer Survivors and Reducing Stigma

• 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

Mobilizing a Grassroots Movement

Mobilizing a Grassroots Movement

Resources and tools for individuals to take

action

LIVESTRONG Leaders in 45 countries

Robust social media: Facebook, Twitter, YouTube, Flickr, LIVESTRONGblog.org

Empowering survivors to share their stories

What next?

• 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