Breast Cancer in Eastern Europe and Central Asia Julie R. Gralow, M.D. Professor and Director, Breast Medical Oncology University of Washington School of Medicine Fred Hutchinson Cancer Research Center Seattle Cancer Care Alliance

Top 10 Cancers in Women: Central/Eastern Europe vs USA

Breast Cancer Incidence and Mortality Worldwide Globocan 2008 data Incidence Mortality

Factors Associated with Global Differences in Breast Cancer Survival Low awareness and education of the public as well as health care providersLow awareness and education of the public as well as health care providers Limited screeningLimited screening Reduced health care accessReduced health care access Later stage at diagnosisLater stage at diagnosis Limited treatments availableLimited treatments available Cultural barriers to careCultural barriers to care Many of these factors are addressable without major monetary investments

The Development of the Eastern Europe/Central Asia Breast Cancer Advocacy Project Engaging Patient Advocates in Cancer Education, Outreach and Policy-making

Ukraine Breast Cancer Assistance Project Program for Appropriate Technology in Health (PATH)Program for Appropriate Technology in Health (PATH) Ukrainian Ministry of HealthUkrainian Ministry of Health US Agency for International Development (USAID)US Agency for International Development (USAID) University of WashingtonUniversity of Washington

Why Was the US Government Interested in Funding a Ukraine Breast Cancer Project? Chernobyl Museum Kiev, Ukraine Cancer Risk and Ionizing Radiation Exposure Most strongly linked to thyroid cancer, leukemia and breast cancer

Contaminated Areas Following 1986 Chernobyl Nuclear Power Plant Accident Country Size of contaminated area (km 2 )Country Size of contaminated area (km 2 ) 37–185 kBq/m 2 >185 kBq/m 2 Russia 49,800 8,100Russia 49,800 8,100 Belarus 29,900 16,600Belarus 29,900 16,600 Ukraine 37,200 5,700Ukraine 37,200 5,700 Sweden 12,000Sweden 12,000 Finland 11,500Finland 11,500 Austria 8,600Austria 8,600 Norway 5,200Norway 5,200 Bulgaria 4,800Bulgaria 4,800 Hatch M et al, Epidem Reviews 2005

What Has Happened with Breast Cancer Risk Post-Chernobyl? Increase in premenopausal breast cancer in women from contaminated areas of Ukraine close to Chernobyl compared with Ukraine female population ratesIncrease in premenopausal breast cancer in women from contaminated areas of Ukraine close to Chernobyl compared with Ukraine female population rates –Standardized incidence ratio = 1.50, 95 percent confidence interval: 1.27, 1.73 Prysyazhnyuk AY et al. Cancer incidence in Ukraine after the Chernobyl accident. In: Chernobyl: message for the 21st century. Proceedings of the Sixth Chernobyl Sasakawa Medical Cooperation Symposium 2002.

Ukraine Breast Cancer Assistance Project Goals Primary aim: to strengthen breast cancer early detection, diagnosis, treatment in 3 cities in UkrainePrimary aim: to strengthen breast cancer early detection, diagnosis, treatment in 3 cities in Ukraine Additional key objective: to improve the quality of life of breast cancer patientsAdditional key objective: to improve the quality of life of breast cancer patients

Assessment of Treatment Practice in Ukraine Kiev City Oncology Hospital Fighting the Crab – Kiev, Ukraine

Assessment of Treatment Practice in Ukraine Limited discussion of disease + treatment – “Don’t say the Word”Limited discussion of disease + treatment – “Don’t say the Word” Treatment decisions based on drug cost/availability, not scienceTreatment decisions based on drug cost/availability, not science Number of cases treated and exact regimens difficult to determineNumber of cases treated and exact regimens difficult to determine Very low doses of chemotherapy used – “Ukrainian women cannot tolerate Western doses”Very low doses of chemotherapy used – “Ukrainian women cannot tolerate Western doses”

Ukraine Breast Cancer Assistance Project: Odessa Chemotherapy Trial “Western” doses of chemotherapy safe and effective“Western” doses of chemotherapy safe and effective Education + experience with clinical trialsEducation + experience with clinical trials Presentation of results by Ukrainians at national + international conferencesPresentation of results by Ukrainians at national + international conferences Consent process created dialogue between physician and patientConsent process created dialogue between physician and patient

Chernihiv Pilot Breast Cancer Screening Program

PATH Psychosocial Support Project for Breast Cancer Survivors

Breast Cancer in Ukraine: PATH Psychosocial Support Project Limited discussion of disease and treatment – “Don’t say the word”Limited discussion of disease and treatment – “Don’t say the word” Interventions: Improving patient understanding, public awarenessInterventions: Improving patient understanding, public awareness –Development of educational materials for patients, families, public –Development of a survivor support and outreach network through training –Exchange visits –Psychosocial support by health care providers and survivors

Lives Renewed: The Emergence of a Breast Cancer Survivor Movement in Ukraine Bishop A, et al. Reprod Health Matters 9: , 2001 In 1997:In 1997: –No breast support groups (or even the concept of patient support systems or services) existed in Ukraine : : –PATH project educated breast cancer patients, encouraged establishment of patient survivor groups By 2001:By 2001: –Advocates from 15 Ukrainian cities had begun providing mutual support in an organized way –Annual breast cancer walk (“March for Life and Hope”) organized by breast cancer advocates in Kiev

From “Don’t Say the Word” in 1997 to the 1 st “March for Life and Hope” in 2001 Kiev, Ukraine

Contiuation of the Ukraine Breast Cancer Survivorship Movement 1999: no breast cancer survivor groups1999: no breast cancer survivor groups 2001: survivor groups in 15 cities, 12 oblasts2001: survivor groups in 15 cities, 12 oblasts Early 2005: national association of survivor groups formedEarly 2005: national association of survivor groups formed 2011: breast cancer survivor groups in 22 cities, representing nearly all of the country’s 25 oblasts2011: breast cancer survivor groups in 22 cities, representing nearly all of the country’s 25 oblasts Breast cancer support groups throughout Ukraine now provide regular opportunities for women to receive the emotional support that contributes to their healingBreast cancer support groups throughout Ukraine now provide regular opportunities for women to receive the emotional support that contributes to their healing

Successor to PATH Project Eastern European/Central Asia Breast Cancer Advocacy Forums Vilnius, Lithuania 2003 Kiev, Ukraine 2005 Minsk, Belarus 2007 Bishkek, Kyrgyzstan 2009 Vilnius, Lithuania 2011 ?Tbilisi, Georgia 2013 Breast cancer patients, advocates, health care professionals, policy makers, pharmaceutical representatives

Goals of Eastern Europe/Central Asia Breast Cancer Advocacy Conferences To combat breast cancer by building advocacy groups with skills to address inadequacy in information, inequity in treatment and care, and injustice in breast cancer early detection, screening, and preventionTo combat breast cancer by building advocacy groups with skills to address inadequacy in information, inequity in treatment and care, and injustice in breast cancer early detection, screening, and prevention

Goals of Eastern Europe/Central Asia Breast Cancer Advocacy Conferences Raise awareness of the impact of breast cancer on societyRaise awareness of the impact of breast cancer on society Provide information on critical breast cancer issues to promote community activismProvide information on critical breast cancer issues to promote community activism Establish health care standards for women with breast cancerEstablish health care standards for women with breast cancer Understand what women with breast cancer want and need, and how to address those needsUnderstand what women with breast cancer want and need, and how to address those needs Bring together doctors, patients and activists as equals around a common causeBring together doctors, patients and activists as equals around a common cause Connect isolated women to international communities for collaborationConnect isolated women to international communities for collaboration Establish patient-doctor dialog and focus health care to the patientEstablish patient-doctor dialog and focus health care to the patient

1st Eastern European Breast Cancer Advocacy Conference Vilnius, Lithuania 2003

2 nd Eastern European Breast Cancer Advocacy Conference Kiev, Ukraine 2005

3 rd Eastern European Breast Cancer Advocacy Conference Minsk, Belarus 2007

Democracy Building through Breast Cancer Advocacy Fulfullment Report of In Rays of Hope (Belarus NGO) to US Embassy Throughout US history, great social advancements such as abolition of slavery, women’s suffrage, and civil rights evolved not from government initiative, but from voluntary grassroots movements. Each began with a group of passionate people coming together around a common cause.Throughout US history, great social advancements such as abolition of slavery, women’s suffrage, and civil rights evolved not from government initiative, but from voluntary grassroots movements. Each began with a group of passionate people coming together around a common cause. The Breast Cancer Advocacy Conference in Minsk was a momentous occasion in grassroots activism. By coming together with a passion to combat the impact of breast cancer in Belarus, conference participants set a course to change how the issue will be recognized at all levels.The Breast Cancer Advocacy Conference in Minsk was a momentous occasion in grassroots activism. By coming together with a passion to combat the impact of breast cancer in Belarus, conference participants set a course to change how the issue will be recognized at all levels.

Democracy Building through Breast Cancer Advocacy Fulfillment Report of In Rays of Hope (Belarus NGO) to US Embassy As a result, breast cancer early detection, screening and prevention will become a national priority in Belarus.As a result, breast cancer early detection, screening and prevention will become a national priority in Belarus. By inviting international participants, the conference planted seeds for similar grassroots mobilization efforts throughout the former Soviet Union.By inviting international participants, the conference planted seeds for similar grassroots mobilization efforts throughout the former Soviet Union.

4 th Eastern European Breast Cancer Advocacy Conference Bishkek, Kyrgyzstan 2009

Eastern Europe/Central Asia Breast Cancer Advocacy Conferences Communicating, Sharing Ideas, Collaborating Vilnius, Lithuania 2003 Bishkek, Kyrgyzstan 2009 (Kazakhstan van!)

Kyrgyzstan Conference 2009

5 th Eastern European Breast Cancer Advocacy Conference Vilnius, Lithuania 2011

2007 Institute of Medicine Report on Cancer Control Opportunities in Low- and Middle-Income Countries Sloan FA, et al, National Academies Press, 2007 Advocacy has a key role to play in bringing the public’s concerns about cancer to decision makersAdvocacy has a key role to play in bringing the public’s concerns about cancer to decision makers Summary recommendations: AdvocacySummary recommendations: Advocacy –Active support and assistance of cancer advocacy in low- and middle-resource countries –Suggested activities: »Set up advocacy networks within countries, regions, and internationally »Identify successful approaches to cancer advocacy and replicate/adapt for use in other settings »Provide hands-on training and technical assistance

A global call to action for cancer in low-and middle-income countries is beginning to emerge….

New Initiatives

Evidence for the Feasibility and Effectiveness of Cancer Care and Control in Countries of Low or Middle Income Much can be done without the latest and most expensive technologies Much can be done without the latest and most expensive technologies Task and infrastructure shifting could benefit the health systems of even wealthy countries Task and infrastructure shifting could benefit the health systems of even wealthy countries Expansion of treatments for MDR-TB and AIDS in poor countries shows that new initiatives for care of complex diseases can be effective and strengthen health systems Expansion of treatments for MDR-TB and AIDS in poor countries shows that new initiatives for care of complex diseases can be effective and strengthen health systems Coordinated financing and procurement can secure reduced prices and increased access to interventions Coordinated financing and procurement can secure reduced prices and increased access to interventions Demonstration programs show that effective cancer diagnosis and treatment can be introduced even in rural areas of low-income countries in which specialized services are absent Demonstration programs show that effective cancer diagnosis and treatment can be introduced even in rural areas of low-income countries in which specialized services are absent Farmer P, et al. Expansion of cancer care and control in countries of low and middle income: a call to action. Lancet 376, 2010

Closing the Cancer Divide: A Blueprint To Expand Access In Low And Middle Income Countries A Report Of The Global Task Force On Expanded Access To Cancer Care And Control Released October 28, /pdf/ccd_report_ pdf

New Initiatives UN High-level Meeting on the Prevention and Control of Non-communicable Diseases September 19-20, 2011

New Initiatives Pink Ribbon Red Ribbon Campaign Launched September 13, 2011 Partnership to leverage public and private investments in global health to combat cervical and breast cancer in Sub-Saharan Africa and Latin America, particularly in HIV+ womenPartnership to leverage public and private investments in global health to combat cervical and breast cancer in Sub-Saharan Africa and Latin America, particularly in HIV+ women –George W. Bush Institute –U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) –Susan G. Komen for the Cure –Joint United Nations Program on HIV/AIDS (UNAIDS) initial commitments of $75 million over five yearsinitial commitments of $75 million over five years

Breast Cancer Advocacy: What Next? Collaboration between Fred Hutchinson Cancer Research Center and Uganda Cancer Institute Medical Oncology fellowship training agreement since 2004Medical Oncology fellowship training agreement since 2004 Seattle and Ugandan researchers collaborate to study and treat infection-related cancersSeattle and Ugandan researchers collaborate to study and treat infection-related cancers FHCRC-Uganda joint Cancer Center under construction in Kampala (groundbreaking October 4, 2011)FHCRC-Uganda joint Cancer Center under construction in Kampala (groundbreaking October 4, 2011)