Breast Cancer in Eastern Europe and Central Asia Julie R. Gralow, M.D. Professor and Director, Breast Medical Oncology University of Washington School.

Breast Cancer in Eastern Europe and

Central Asia

Julie R. Gralow, M.D.Professor and Director, Breast Medical Oncology

University of Washington School of MedicineFred 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 providers

• Limited screening• Reduced health care access• Later stage at diagnosis• Limited treatments available• Cultural barriers to care

Many of these factors are addressable without major monetary investments

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

Ukraine Breast Cancer Assistance Project

1997-2000

• Program for Appropriate Technology in Health (PATH)

• Ukrainian Ministry of Health

• US Agency for International Development (USAID)

• University of Washington

Why Was the US Government Interested in Funding a Ukraine Breast

Cancer Project?

Chernobyl MuseumKiev, 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 (km2)

37–185 kBq/m2 >185 kBq/m2 • Russia 49,800 8,100 • Belarus 29,900 16,600 • Ukraine 37,200 5,700 • Sweden 12,000 • Finland 11,500 • Austria 8,600 • Norway 5,200 • Bulgaria 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 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 Ukraine

• Additional 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”

• Treatment decisions based on drug cost/availability, not science

• Number of cases treated and exact regimens difficult to determine

• 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

• Education + experience with clinical trials

• Presentation of results by Ukrainians at national + international conferences

• Consent 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”

• Interventions: 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 9:126-134, 2001

• In 1997:– No breast support groups (or even the concept of

patient support systems or services) existed in Ukraine• 1997-2000:

– PATH project educated breast cancer patients, encouraged establishment of patient survivor groups

• 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 1st “March for Life and Hope” in 2001

Kiev, Ukraine

Contiuation of the Ukraine Breast Cancer

Survivorship Movement• 1999: no breast cancer survivor groups• 2001: survivor groups in 15 cities, 12 oblasts • Early 2005: national association of survivor groups

formed• 2011: 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 healing

Successor to PATH Project Eastern European/Central Asia Breast Cancer

Advocacy Forums

Vilnius, Lithuania 2003Kiev, Ukraine 2005

Minsk, Belarus 2007Bishkek, 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 prevention

Goals of Eastern Europe/Central Asia Breast Cancer Advocacy Conferences

• Raise awareness of the impact of breast cancer on society• Provide information on critical breast cancer issues to

promote community activism• Establish health care standards for women with breast

cancer• Understand 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 cause• Connect isolated women to international communities for

collaboration• Establish patient-doctor dialog and focus health care to the

patient

1st Eastern European Breast Cancer Advocacy ConferenceVilnius, Lithuania 2003

2nd Eastern European Breast Cancer Advocacy Conference

Kiev, Ukraine 2005

3rd 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.

• 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.

• By inviting international participants, the conference planted seeds for similar grassroots mobilization efforts throughout the former Soviet Union.

4th 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

5th Eastern European Breast Cancer Advocacy ConferenceVilnius, 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 makers

• Summary 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

• 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

• 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

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 AccessTo Cancer Care And Control

Released October 28, 2011

http://ghsm.hms.harvard.edu/uploads/pdf/ccd_report_111027.pdf

New InitiativesUN High-level Meeting on the Prevention

and Control of Non-communicable Diseases

September 19-20, 2011

New InitiativesPink 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+ 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 years

http://www.state.gov/r/pa/prs/ps/2011/09/172244.htm

Breast Cancer Advocacy: What Next?Collaboration between Fred Hutchinson

Cancer Research Center and Uganda Cancer Institute

• Medical Oncology fellowship training agreement since 2004

• Seattle and Ugandan researchers collaborate to study and treat infection-related cancers

• FHCRC-Uganda joint Cancer Center under construction in Kampala (groundbreaking October 4, 2011)