Europa Donna activities in Estonia and some experiences

from other countries

Ene TombergTallinn City Government

Social Welfare and Health Care DepartmentEuropa Donna

Breast Cancer Facts

• Incidence in the EU-28 in 2012 was estimated to be367 090

• The lifetime risk of developing breast cancer forwomen in EU-28 is 1 in 8

• An average of 20-30% of BC cases in Europe occur in women when they are younger than 50 years old; 33% occur at age 50-64 and the remaining cases in women above this age.

EUROPA DONNA – The European Breast Cancer Coalition

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Ensure that all European Women have Access to Accurate Information and Quality Screening,

Diagnosis and Treatment

Europa Donna Mission

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EUROPA DONNA47 MEMBER COUNTRIES

AlbaniaArmeniaAustriaBelarusBelgiumBulgariaCroatiaCyprus Czech RepDenmarkEstoniaFinlandFranceGeorgiaGermanyGreeceHungaryIceland IrelandIsraelItalyKazakhstanKyrgyzstanLatvia

LithuaniaLuxembourgMacedoniaMaltaMoldovaMonacoThe NetherlandsNorwayPolandPortugalRomaniaRussiaSerbia SlovakiaSloveniaSpainSwedenSwitzerlandTajikistanTurkeyUKUkraineUzbekistan

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Europa Donna – European Breast Cancer Coalition

• Independent non-profit organization whose members are affiliated groups from countries throughout Europe.

• The Coalition works to raise awareness of BC and to mobilize the support of European women in pressing for improved BC education, appropriate screening, optimal treatment and increased funding for research.

• EUROPA DONNA represents the interests of European women regarding BC to local and national authorities as well as to institutions of the EU.

Europa Donna`s 10 Goals

1. To promote the dissemination and exchange of factual, up-to-dateinformation on BC throughout Europe.

2. To promote breast awareness

3. To emphasise the need for appropriate screening and early detection.

4. To campaign for the provision of optimum treatment

5. To ensure provision of quality supportive care throughout and aftertreatment

6. To advocate appropriate training for health professionals

7. To acknowledge good practice and promote its development

8. To demand regular quality asessment of medical equipment

9. To ensure that all women understand fully any proposed treatment options, including entry into clinical trials and their right to a second opinion

10. To promote the advancement of BC research.

Today’s Priorities

• Implementation of Breast Cancer Resolutions and “European Guidelines for quality assurance in breast cancer screening and diagnosis” 4° edition, especially:

- Screening according to European Mammography Screening Guidelines-Specialist Breast Units according to EU Guidelines

• Accreditation of breast services and Guideline revision• Ensure access for MBC patients• National breast cancer registries• Advancement of Research• Prevention: Breast Health Day• Survivorship

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Education: Advocacy Training

Annual EUROPA DONNA European Breast Cancer Advocacy Training Course

• Science of Breast Cancer

• Lobbying techniques

• Communication Skills Training

• Media Training:incl: building relationships, selling your story, how to engage media, overcoming barriers

• Train the Trainer

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Education• Biennial EUROPA DONNA Pan European Conferences

• Co-organiser of European Breast Cancer Conferences with EORTC (European Organisation Research &Treatment of Cancer) & EUSOMA (European Society of Breast Specialists)

• Collaboration with other Organisations: ECN (European Cancer Network), ECCO, ESTRO, ESMO ETC.

• ESO- MBC 3 Conference Lisbon 2015

• BIG, MINDACT Trial, AURORA,Survivorship WG

• Europa Donna Advocacy Leader Conferences

• Working Groups and Surveys

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Policy and Public Affairs

• European Patients Forum (on-going)

• CanCon- Cancer Control Joint Action- replaced EPAAC

• EU Guideline Review/Breast Services accreditation protocol/ECIBC/JRC

• European Commission Expert Working Group on Cancer Control

• MEP meetings/Declaration 2015

• National Parliamentary activities

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Breast Health Day 15 October

Breast Health Day is ED’s prevention program educating women and girls about the importance of :

1. lifestyle factors in the prevention of breast cancer

2. early detection through population based mammography screening programmes

See 2014 campaign and 2015 plans atwww.breasthealthday.org

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15. October– breast health day

Take Your First StepFor Your Breast Health

Engaging in physical activity,maintaining a normal bodyweight and eating a healthydiet can help your breasthealth.

Held every year, BreastHealth Day aims todisseminate informationconcerning breast health andraise awareness ofprevention and earlydetection of breast canceramong women and girlsacross the globe.

EUROPA DONNA STRENGTH

European advocacy organisation with European strategy and goals

+Extensive network of survivors working at national level, ED

fora

SIGNIFICANT IMPACT ON EUROPEANINSTITUTIONS AND NATIONAL HEALTHSERVICES

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Actions of ED organisations in various countries:

• Educational seminars for BC survivors . AVON Walk in Prague. „Mamming Day Prague“ event to encourage participation in screening (Czech Republic)

• Promoting specialist breast units through Pink Ribbon Day, Breast Health Day and Daffodil Day (Croatia).

• Opening of the 4th ED Cyprus House in Paphos. Pink Silhouette walk . Summer party for women with BC. Breast friends programme ( Cyprus).

• Establishing peer group activities in several cities, as well as for young and for chronic care patients. Publishing four issues of the ED Finland magazine (Finland).

• Distributing 700 patient information packages. Implementation of „Mona`s Blog“ (Austria).

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Situation in Estonia• Among 40 countries in the European region, Estonia has the

28th highest BC incidence – 50,2/100 000 . With BC mortality rate of 15,9/100.000 Estonia ranks 24th in the same comparison.

• In 1970–2000 BC incidence doubled in Estonia. In order to tackle the problem, screening was launched in 2002, financed from the national health insurance budget.

• More than 600 women a year are diagnosed with BC and according to the Cancer Registry data from 2004-2008 , 42,7% of the BC cases have been local and 52,0% far advanced at the moment of diagnosis.

• We lack a registry of screenings in Estonia, therefore we have no exact data about cases detected by screening, whether the mortality rate is lower among those that participate in the screening and what is the cost of achieving this.

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Screening programmes in neighbouring countries

• In Finland screenings were started in 1987. Participation is free of charge. Participants with the interval of two years receive a written invitation and the target group are women between 50-59 years (in some municipalities incl 60-69).

• Participation rate is approx 90% (Holland 2006).

• Sweden started in 1989. Participation is free of charge. Participants with the interval of 1.5-2 years receive a written invitation and the target group are women between 50-69 years. Participation rate 81% (Törnberg 2006, Haukka 2011).

• UK started in 1989. Participation is free of charge and the target group are women between 50-70 years with the interval of 3 years. (Holland 2006; NHS Cancer Screening Programmes).

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How effective is screening

• According to the survey carried out in Sweden in the 1980s it was estimated for women in the age of 40-70 that screening would reduce BC mortality by 33% (HCotN 2002 -16). Later it turned out that screening had reduced BC mortality among women in the age of 40-70 by 21% (Nyström 2002).

• The screening programme in the UK saves 1400 lives a year, which means that BC mortality has reduced from 8.0 to 5.2 out of 1000; provided that women participate in the screening programme on regular bases for ten years ant the participation rate is 75%

• Screening of women over 65 y is effective and efficient if the women’s health conditions are good. (Mandelblatt 2003, OHTAS 2007)

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Screening in Estonia

• From 2003 women were invited to screenings according to the principals of cohort studies based on the registry of the National Health Insurance Fund, according to the year of birth with the interval of two years.

• From 2008 the target group are women in the age of 50-62 who have health insurance.

• The screening excludes women without national health insurance, women who have had a mammography in the last two years, and women who are already diagnosed with BC..

• From 2009 the women can choose the medical institution where they want the screening to be performed.

• The goal of the screening programme is to increase the 5-year survival of BC patients in Estonia.

Screening is performed:

• Tallinn and Harju County – 4 hospitals

• Rest of the country - 4 hospitals

• Mobile mammography bus, serving women on the islands and in Central Estonia. One of the buses was financed by a TV fundraising programme “Jõulutunnel”, receiving donations from people.

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Problems with screening:

• Low participation rate (although growing trend in the last years): in 2013 the participation rate was 52.5%, 155 new cases detected, 77.63% of the cases were detected at an early stage

• In 1980-2009 the rate of primary BC cases among women in the age of 15-44 was 13%.

• Invitations sent by post according to the data from the population registry, seldom reach the addressees as some of the residents in Estonia fail to present their accurate data to the registry.

• Lack of a central screening registry prevents us from monitoring women’s participation and to invite them systematically to screenings. Register start 2015.

• Women without health insurance are excluded from the study

• Contract volumes for screening mammography

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Partnership with Estonian Cancer Society

• Estonian Cancer Society is an umbrella organization for NGOs dealing with cancer issues in Estonia. There are over 2,000 members belonging to different organizations..

• Objectives of Cancer Society:– To raise awareness and knowledge of the public to reduce illness, to

promote early detection of cancer and thereby improve the treatment results.

– Rehabilitation of cancer patients, their improved quality of life

– Contribution to solving cancer-related social issues (participation in writing a cancer strategy etc)

Has started two foundations – SA Vähi Sõeluuringud ja SA Vähihaigete Toetusravi (cancer screening and supportive therapy)

Breast Health Offices• Two Breast health offices have been opened in Tallinn

• Breast health office is for women who have problems with breast health of questions about their breasts.

• Women are encouraged to go to the office if they detect lumps, nodes or other changes in their breasts

• Women can go to the Breast health office with a letter of referral from their GP, specialist or mid-wife.

• After primary consultation further tests will be performed if necessary and further consultation with a breast specialist.

• Breast Health Offices are in North Estonia Medical Centre and in East Tallinn Central Hospital. Both offer individual counseling about diet and other practicalities, breast implants, as well as psychological counseling.

• Pink Football

The female football team of FC Tartu Tammeka organizes a fundraising event to raise awareness about breast cancer.

The money from tickets is given to the Estonian Cancer Society

• Famous Estonian womenfighting against breastcancerAim: to point at the

importance of early detection of BC, to support women fighting cancer, and their families, help them to cope with the fear and other aspects of the disease.

Positive message: Woman, take care of your health.

The football match will be on Kadrioru stadium; a bikini tribune “Take care” will be open during the game to draw attention to the campaign.

• Jeans against breast cancer

Last Thursday in May, women wear jeans to work, and a pink ribbon – the symbol of hope.

Aim – to raise awareness among women about BC, to increase participation in screening.

Message– BC can be cured if detected at an early stage.

We can reduce the risk of BC by maintaining a healthy weight, being physically active and keeping a healthy diet.

Counseling cancer patients

• Topics:

– The importance of a healthy diet

– Finding a balance and strength; ideas and practical tips

– Modern opportunities for prevention, diagnostics and therapy

– Being physically active during different stages of the disease.