SOURCE: LIVESTRONG

LIVESTRONG

LIVESTRONG

June 17, 2011 17:34 ET

LIVESTRONG® Is Changing the Way the World Talks About Cancer Through Education and Empowerment

LIVESTRONG Presents at the Global Health Council's 38th Annual International Conference; Survey Offers the First Comprehensive Data on Cancer Stigma in South Africa

AUSTIN, TX--(Marketwire - Jun 17, 2011) - This week, LIVESTRONG® presented at the Global Health Council's 38th Annual International Conference: Securing a Healthier Future in a Changing World at the Omni Shoreham Hotel in Washington, D.C. LIVESTRONG participated in the panel, "Breaking through the Stigma: Building a Global Model to Fight Cancer Myths and Misperceptions," with their partners RAND and John Snow Inc. (JSI), who is implementing the Cancer Anti-Stigma Initiative in South Africa and Mexico. The panel explored the vast and yet untouched issue of cancer stigma from the individual, community, organizational, institutional and policy perspectives. It also addressed innovative research and programmatic approaches to reducing cancer myths and misperceptions; and demonstrated the value of the patient perspective in awareness campaigns and programs.

"LIVESTRONG's goal in South Africa and Mexico is to reduce stigma, raise awareness, educate and advocate, empower survivors and address the need for healthcare accessibility," said LIVESTRONG president and CEO Doug Ulman. "Through this work, we hope to strengthen the voice of those already outspoken, create platforms for those seeking encouragement and champion the plea for necessary policy change within the healthcare community."

LIVESTRONG, the brand of the Lance Armstrong Foundation, was created in 1997 by the cancer survivor and champion cyclist to serve people living with cancer and empower communities to take action. Developed by LIVESTRONG in association with JSI, the Cancer Anti-Stigma Initiative, which launched in South Africa in March 2010 and in Mexico in May 2011, seeks to raise cancer awareness globally and break down the pervasive stigma that is associated with the disease through empowering survivors to share their personal stories and educate populations through culturally relevant and targeted messaging. South Africa and Mexico were selected as the initial locations due to the countries' widespread stigma and significant cancer burden.

In 2008 there were an estimated 74,700 new diagnoses of cancer in South Africa and 127,600 in Mexico. Due to the widespread stigma associated with the disease and tremendous lack of centralized resources to document and capture data, it is highly probable that many people went undiagnosed and unrecorded.

In order to obtain comprehensive data and determine a baseline status to work from, the Cancer Anti-Stigma Initiative launched a household survey in September 2010 in South Africa that focused on knowledge and attitudes of cancer and the experienced and perceived stigma associated with the disease. The early findings from this survey emphasize the need for programs like the LIVESTRONG initiative to personalize cancer for the populace -- sharing stories of healthy life after cancer and encouraging acceptance and compassion from caretakers and loved ones.

The South Africa survey offers the first comprehensive look at cancer stigma in a developing country and has helped establish stigma as a key social issue of cancer burden within the country.

Early survey findings include:

  • Almost 50% of respondents stated that they have little to no control over reducing one's risk (low locus of control). This low locus of control is strongest among 25-39 year olds, who are also the primary target audience for the initiative.
  • 33% of respondents indicated that they would not marry someone who had cancer nor allow their child to marry someone who had cancer.
  • Almost 70% of respondents indicated that they thought cancer patients are "in constant pain" with more than 30% believing that cancer patients are going to "die an awful death" and that they have lower fertility or virility.
  • More than 50% of survivors indicated that they were unhappy about how the illness affected their appearance, and almost 40% worried about other people's attitude towards them, thinking they were a burden to others and that people avoided looking at them.

Early survey conclusions include:

  • Programs like LIVESTRONG's Cancer Anti-Stigma Initiative are needed to emphasize and personalize the ability to survive cancer so that more South Africans realize that they do have some control over the situation.
  • Programming needs to focus on each individual's ability to have a life after cancer and emphasize that cancer does not equal death. Stories of healthy, productive survivors, along with positive messages are essential to combating this perception.
  • Need to disseminate messages that those with cancer need a loving, accepting and supportive environment.
  • The overall number of cancer survivors interviewed was surprisingly small. This could indicate fear of disclosure, a low number of living cancer survivors or a low level of cancer diagnosis. Programming needs to focus on the importance of creating a more public and accepted dialogue around cancer so that survivors are empowered to share their stories. This will help build a supportive, accepting cancer community.

The complete Cancer Anti-Stigma Initiative survey report from South Africa will be released late this year.

LIVESTRONG has also been working on the Survivor Empowerment Initiative in South Africa with partners Campaigning for Cancer and the American Cancer Society, as well as key local organizations. This collaboration launched in March 2010 as a strategic effort to bring together decision makers, clinicians, media, advocates and survivors to work towards a system of care that put the survivor first. The goal of the initiative was to humanize statistics and share real stories that would help bring visibility to gaps in cancer control and highlight the need for cancer to be a stronger priority on South Africa's health agenda.

In May 2011, LIVESTRONG supported the Voice of Cancer Survivor Forum, planned and hosted by a committee of local South African organizations, which had the objectives of discussing the critical issues surrounding cancer, hearing the voices of survivors and collaboratively developing a plan to elevate cancer as a priority on national and international health agendas. The committee, in partnership with local health leadership issued a national call to action for South Africa to implement a national cancer registry, establish a multi-sectoral National Cancer Advisory Council by the Minister of Health that includes a seat at the table for civil society and survivors and strategies that address stigma and discrimination of people affected by cancer. The South African government responded by making a formal commitment to address these issues and make cancer a priority on the nation's health agenda.

Expanding on the efforts achieved in South Africa, LIVESTRONG, working with implementing partner JSI, launched the Comparte tu Historia Campaign to combat cancer stigma in Mexico in late May. The Campaign kicked-off with a four-city tour in targeted communities: Nezahualcóyotl (May 28), Alvaro Obregón (June 4), Mérida (June 11) and Guadalajara (June 18). The tour is anchored by a community-oriented performance featuring nationally-renown wrestlers fighting against a common enemy: cancer. In addition to the performance, each city's program underscores the anti-stigma message with a personal connection: local survivors openly share their personal experiences with the disease. To further educate and combat healthcare accessibility concerns, a health fair is created at each event offering information and onsite screening opportunities from a variety of local and national NGOs. The goal of the initial launch in Mexico is to spread knowledge, raise awareness, and open communication around common cancer misconceptions.

The key messages of the Comparte tu Historia Campaign include:

  • Cancer is a disease that can affect anyone
  • People should not be afraid to talk about cancer and by sharing their story, they are breaking down stigma and advancing the cancer fight
  • People affected by cancer are not alone
  • Communities should be empowered to take action in the fight against cancer
  • With early detection and proper resources, cancer can be curable
  • There is life with and after cancer

The Comparte tu Historia Campaign will continue to collaborate with local organizations and health authorities to develop knowledge and awareness needed to successfully confront fears and misconceptions about cancer in Mexico through the use of media, community outreach, special events and public relations.

About the Cancer Anti-Stigma Initiative
In 2007, LIVESTRONG executed a global cancer research study intended to give people affected by cancer a chance to share their cancer experiences and their perspectives on the cancer problem. The study included more than 4,500 interviews across ten countries with healthcare practitioners, cancer survivors, organizational leaders and community members, investigating the nature of the stigma associated with cancer and its impact. The data illustrated that this stigma is pervasive -- existing across countries, cultures, and communities. LIVESTRONG is using the results of this research to strengthen patient advocacy in international settings, build a global grassroots movement, and raise awareness about cancer in order to decrease the stigma associated with the disease.

The Cancer Anti-Stigma Initiative is the first national initiative of its kind addressing cancer stigma. Its goal is to illustrate that cancer is survivable; that cancer survivors can lead healthy, productive lives during and after cancer; and to encourage both personal and public dialogue about the disease. Ultimately, LIVESTRONG will create an adaptable model to reduce cancer stigma that can be replicated in countries around the world.

About LIVESTRONG/Lance Armstrong Foundation
LIVESTRONG serves people affected by cancer and empowers them to take action against the world's leading cause of death. Created as the Lance Armstrong Foundation in 1997 by cancer survivor and champion cyclist Lance Armstrong, the organization is now known publicly by its powerful brand -- LIVESTRONG -- and is a leader in the global movement on behalf of 28 million people around the world living with cancer today. Known for its iconic yellow wristband, LIVESTRONG has become a symbol of hope and inspiration to people affected by cancer around the world. Since its inception, the organization has raised more than $400 million for the fight against cancer. For more information, visit LIVESTRONG.org.

About John Snow, Inc.
John Snow, Inc. (JSI) is a public health research and consulting firm founded in 1978 and dedicated to promoting and improving the health of individuals and communities in the United States and around the world. JSI collaborates with regional, national and international partners to build local capacity to address critical health problems. Through management assistance, research and evaluation, and education, JSI works to enable clients to provide culturally appropriate services in an efficient, effective, and compassionate manner. For more information visit JSI.com.

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