Download Women`s Health Matters - European Institute of Women`s Health

THE EUROPEAN INSTITUTE OF WOMEN'S HEALTH
Wom en's Hea lth
A Warm Welcome to our Patron
M rs Jolanta .ZDĞQLHZVND
Matters
European Partnership - Action Against Cancer
The
Commission
launched the Cancer
Partnership
in
September 2009 to
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fight against cancer.
With more than 3
million new cases and
1.7 million deaths
each year, cancer is the second biggest cause of death
in Europe. But one third of cancer cases could be
prevented.
The European Cancer Partnership has set an
ambitious target to reduce new cancer cases by 15 % by
the year 2020. To that end the aptly named Partnership
will bring together key cancer stakeholders from
Member States and the EU, to step up the fight against
cancer.
Cancer is on the increase largely due to the progressive
ageing of the European population. This trend will
continue - if not accelerate - in the absence of robust
prevention measures. The Cancer Partnership is a
timely initiative for protecting family DQG ZRPHQ¶V
health.
Former First Lady of Poland
Founder and President of the Foundation
Communication without Barriers
Women share a large part of the cancer burden, not only
because of their own specific cancers, but also as carers
of family members and children with cancer. Women on
average outlive men by 6 years and make up a larger
proportion of the older population. Cancer causes a
quarter of the deaths in European women and is the
second main cause of death in older women after heart
disease.
In addition, the European Cancer Partnership, will also
encourage Member States to share best practice for
improved cancer treatment and care for those cancers
which cannot be prevented or prevention comes too late.
For example, ovarian cancer is still one of the most
intractable diseases that attack women and more
medical research and European collaboration is badly
needed.
EIWH Newsletter May 2010
2
I nvesting in Prevention and Screening
The EIWH is a collaborating partner in the Cancer
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the Work Packages for Prevention and Screening.
Prevention of new cancer cases is the most costeffective long-term strategy. The EIWH will be
collaborating with the European Cancer Leagues to
promote The European Code against Cancer through
the use of effective prevention messages and tools
targeted at specific population groups.
Europe also needs to address the increasing uptake of
smoking in young girls, not only to prevent lung and
other cancers, but also help reduce major health threats
such as CVD, diabetes, osteoporosis etc in later years.
For more information about the European Cancer
Partnership see
http://ec.europa.eu/health/ph_information/dissemination
/diseases/cancer_partnership_en.htm
The EI WH looks forward to working closely with all
collaborating partners of the Cancer Partnership and
our member organizations. Please contact Hildrun
Sundseth if you would like to become involved.
[email protected]
The Need for Colon Cancer Screening
,Q$SULOWKH(,:+HQJDJHGZLWK/\QQ¶V%RZHO&DQFHU
Campaign and the Prevent Cancer Partnership - Europe
to organise a meeting in the European Parliament to
launch the European Colon Cancer Prevention
Campaign.
Every year an estimated 330.000
Europeans are diagnosed with colon cancer and nearly
half of them die of the condition. But over half of those
deaths could be avoided with prevention measures and
screening. Colon cancer is probably the most
preventable and curable cancer. Yet, it is the second
biggest cancer killer across Europe. Part of the
campaign is a Report Card which can be easily adapted
to local situations and used by politicians to support the
Screening campaign in their country.
The Colon Cancer meeting was chaired by M EP Alojz
Peterle5DSSRUWHXURIWKH(XURSHDQ3DUOLDPHQW¶VUHSRUW
on the European Cancer Partnership and attended by 12
Members of the European Parliament and the Head of
the Information Unit of DG Sanco.
In his report, Mr Peterle stressed the imperative for the
EU and its 27 Member States to invest in prevention.
Indeed in his own country, Slovenia, he has become
Ambassador for colon cancer screening. Several MEPs
volunteered to become Ambassadors in their country.
Cancer ScreeninJIRUµ+DUG-to-5HDFK¶*URXSV
The EIWH contributes to effective cancer screening
programmes to include disadvantaged and marginalised
women in Ireland.
The Institute was part of the National Cancer Screening
Service consultative group on the introduction of the
cervical cancer programme to ensure uptake among
'Hard to Reach'/marginalised Population Groups.
The main objective was to create more awareness of
these health issues among Muslim women, through the
development of user-friendly health information. We
held four focus groups with Muslim women from
various demographic and socio-economic backgrounds
to gather their views on the presentation of health
information. Part of the research methodology also
included two in-depth interviews, one with a Muslim
physician working in a STD clinic in central Dublin and
one with the coordinator of the Muslim intercultural
centre.
Several types of barriers can preclude women from
marginalised and disadvantaged groups from using
EIWH Newsletter May 2010
3
cancer screening services. Some of these barriers reflect
limited access to preventive health services, whereas
others stem from a lack of understanding, sensitivity and
motivation among healthcare providers to accommodate
marginalised groups. Even when screening services are
accessible and women-friendly, they fail to attract many
women because of psychological and socio-cultural
factors such as fear of a cancer diagnosis and treatment,
and subsequent disability and dependence on family
members.
European Standards of Care for Children with
Cancer
SIOP Europe, the organisation for paediatric
oncology, together with the -RODQWD .ZDĞQLHZVND
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developed a much needed consensus document that
aims to ensure pan-European Standards of Care
for Children with Cancer. Providing good-quality,
multi-disciplinary care for children and young
people with cancer and comprehensive support
mechanisms for their families is essential for
optimal outcomes.
The EIWH wishes to congratulate our Patron Mrs
.ZDĞQLHZVND and Ela Pomaska of the Foundation
for having taken the leadership in this initiative.
Women - mothers - play a key role caring
alongside health professionals to achieve the best
treatment and care for their children. The
Standards will allow sharing best practice across
the EU and be promoted through the European
Cancer Partnership to reach a wide audience. It
has the potential to save many chilGUHQ¶VOLYHV.
Cancer is the leading cause of death from disease
in young people in Europe. With wide-ranging
survival rates in EU member states, the Standards
document will provide a critical step in preventing
children and young people from suffering
unnecessarily or dying.
For more information
SI OP Europe, the European Society for Paediatric
Oncology (SIOPE)
www.siope.eu
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www: j.kwasniewska.aid.org.pl
Communicating risk in familial cancer WKH(XURSHDQSDWLHQW¶VSHUVSHFWLYH
Communicating cancer risk effectively can
mean that those at high risk of developing the
disease may take part in cancer prevention and
screening programmes. Under the guidance of
Lesley Fallowfield, Professor of PsychoOncology at Sussex University and EI WH Board
member, Dr Rachel I redale, Senior Research
Fellow at the Institute of Medical Genetics, Cardiff
University, patient representatives explored the
information needs of people with a genetic risk of
breast cancer during the European Breast Cancer
Conference at Barcelona in March 2010.
The round table discussion was filmed and short
clips focusing on the issues raised such as the
difficulties in communicating and interpreting risk,
telling the family, options and choices will be
hosted soon on ecancerpatient.tv
It is now hoped that a wider audience will want to
join in the online debate and share their
experiences and knowledge in this very important
area.
This particular piece of work is being conducted by
the Tenovus Cancer Charity and is part of a larger
pan-European project called Eurocancercoms.
Tenovus is leading the patient/consumer research
in identifying and evaluating new technologies and
ways of sharing data amongst cancer patients, their
families and supporters.
The aim of Eurocancercoms is to improve
communication within the cancer community by
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professionals, researchers, politicians etc. and
making information relevant to these groups more
easily available.
http://www.eurocancercoms.eu/
http://www.tenovus.org.uk/
European Medicines Agency (EM A)
The EIWH is now eligible to participate in the European
Medicines Agency activities. This is an important new
departure for the Institute. Women take over 60 % of all
medicines and they are key users of the prescription
products that are approved by the EMA via the
EIWH Newsletter May 2010
4
centralised procedure. The Agency provides
information about the authorised medicines
directed to the patient and the general public.
During the preparation of this information, the
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organisations to ensure that it is adequately
formulated and comprehensible to the target
audience.
Women are not always optimally included in
Clinical Trials which means that at the time a
medicine is approved, there is a lack of knowledge
how it works in women. Examples where
information is lacking are medicines and pregnant
women or women and heart disease. Therefore it is
critical that after approval, women and their
representatives have a voice in the information
provided, the benefit/risk assessment and the
collection of pharmaco-vigilance data postauthorisation.
EMA website address http://www.ema.europa.eu/
VALUE+
The EIWH has been a partner in this 2-year Sancofunded project for pURPRWLQJSDWLHQWV¶LQYROYHPHQW
in EU supported health-related projects. The EIWH
role was to contribute gender issues for patient
involvement in research. With the European
Patient Forum leading the project, the objective
was to develop and disseminate evidence-based
tools to encourage future patient involvement in
health-related projects and raise awareness of
patient centred, equitable healthcare, both at
European level and in the Member States. The
resources developed as part of the project such as
the Value+ handbook, Value+ toolkit can be
accessed at:
http://www.eu-patient.eu/InitativesPolicy/Projects/ValuePlus/Resources/ValueResources/
ENGENDER
The EIWH is a partner in this DG Sanco funded
project, which is led by the Karolinska Institute,
Sweden. ENGENDER aims to contribute to the
information and knowledge base on effective and
equitable policies and programmes that promote
gender equity in health in Europe, and provide the
evidence for governments to take action to address
the health impact of gender inequalities.
Although many policies and interventions to
reduce health inequalities are in existence in
Europe and elsewhere, there is a lack of knowledge
of what works in improving the gender equity
balance in health. There is little specific guidance
to assist policy makers. The project will create an
inventory of good practice and propose
recommendations for more effective and equitable
health policies for women and men.
For this purpose, ENGENDER will establish a
sustainable ³(XURSHDQ ([SHUW 1HWZRUN RQ
policies and interventions to tackle gender based
LQHTXLWLHV LQ KHDOWK´. The Network will be
instrumental in contributing to the collection,
continuous updating, dissemination and use of the
inventory and developing topic- specific policy
briefings and recommendations. Information can
be accessed at the ENGENDER website:
http://engender.eurohealth.ie/
I f you would like to get involved as a member of
the Expert Network please contact Kristin for
more information: [email protected]
Prevention of Heart Disease in Women
The EIWH is working with the European Heart
Network in a Europe-wide project, funded by DG
Sanco to improve awareness, diagnosis and
treatment of cardiovascular disease (CVD) in
women. The project investigates issues of CVD
that are specific to women and provides
recommendations for awareness campaigns that are
targeted at women, as well as educational
programmes for health professionals. It will
identify the existing knowledge gaps across the EU
and collect information from multi-centre and
multi-national clinical trials. For the first time, this
will allow an analysis of this type of information in
Europe.
The EIWH took part in the 5 November 2009
expert meeting µ5HG $OHUW IRU :RPHQ¶V +HDUWV¶
organised by the European Heart Network and the
European Society of Cardiology. At the meeting
EIWH Newsletter May 2010
5
the µRed Alert¶ report was presented which shows
a number of inequalities in treatment of women
with CVD compared to men. Women are
underrepresented in clinical trials which leads to
lack of information on treatment and rehabilitation.
It also points out that women often do not arrive in
time in hospitals or that they are not correctly
diagnosed so that treatment after a CVD incident is
often started too late.
The report and presentations from this meeting
can be accessed at:
http://www.ehnheart.org/content/ItemPublication.a
sp?docid=7474&level0=1456&level1=2096&level
2=2187
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in May this year. It brought together key
stakeholders from public health institutions, local
governments and NGOs in Poland to discuss
effective collaboration on prevention and health
protection programmes for Polish women.
EIWH Board member, Hildrun Sundseth, gave a
European overview on ZRPHQ¶VKHDOWKDQGwhy it
was important to reach out to women as the
custodians of family health to engage them in
prevention.
There was a general consensus that investing in
prevention and health promotion was critical,
given that many chronic diseases were on the
increase due to lifestyle changes and people living
longer. Several Polish examples of good practice
emphasised
the
importance
of
positive
communication in education campaigns as an
effective tool to combat stereotypes and myths.
Delegates were addressed by the Deputy Speaker
of the Polish Parliament and the chair of the
Parliamentary Health Committee who both stressed
their commitment to prevention.
NEWS FROM EIWH M EM BERS
APOZ and Friends - Bulgaria
We are pleased to report about the current projects
from our new member organisation, APOZ and
friends. APOZ is an umbrella for all cancer patient
organisations in Bulgaria. The driving force behind
APOZ is Jeni Ardaska who launched the first
Cancer Patient Summit in Bulgaria in 2008. APOZ
is currently working on 3 projects that are of great
interest to the EIWH:
Psychosocial support for cancer patients and
their families
APOZ has opened 3 centres where such support is
given to cancer patients. Adding a more caring and
human face to the sometimes harsh oncology
treatment is often vital for the patient¶s chances of
recovery.
For more information in Bulgarian
www.oncobg.info
Young people and sexually transmitted diseases
Collaborating with musicians, movie makers and
networks of young people, APOZ has started an
exciting education project targeting young people
about sexually transmitted diseases such as HPV
and cervical cancer. The incidence of cervical
cancer is the second highest in the EU-27 Member
States after Romania. Too many women still die
from a cancer for which there are effective public
health measures of prevention and screening.
For more information in Bulgarian
www.uchoose.bg
Saying NO to Smoking
APOZ has also started an education programme
about smoking and lung cancer that aims to help
people to say NO to smoking rather than stigmatise
them.
Bulgaria has the second highest percentage of
smokers in the EU after Greece. About every third
person between age 10 ± 19 is a regular smoker.
Unfortunately the ban on smoking in public places,
which was to come into effect in June this year, has
been considerably watered down by lawmakers.
For more information in Bulgarian
www.azneiskam.com
EIWH Newsletter May 2010
6
UPCOM I NG EVENTS - FOR I NFORM ATI ON
Open I nformation Day & Brokerage event on
FP7 Health research
Registration is welcome from all interested parties
and/or organisations from the broader community
interested in EU health policy.
The European Commission, Directorate Health of
DG Research is organising the Information Day on
8 June in Brussels, Centre Borschette.
The aim of the Open Information Day is to
highlight the priorities, novelties and special
features of the 2011 Work Programme. It will
provide guidance on proposal preparation and
partnering for the next calls.
The Day is for everyone interested in the research
opportunities offered by the 2011 Work
Programme, i.e. researchers and research
institutions, universities, small and medium sized
enterprises, SME associations, universities, patient
organizations.
Participation to the event is free of charge, but
registration is obligatory.
.
http://ec.europa.eu/research/health/events02_en.html.
Open Health Forum
A Warm Welcome to our new Members
Austria:
Ilse Hein, Obfrau, Founder and Leader of the
Austrian Multiple Myeloma Association
Bulgaria:
Evgeniya Adarska, Chair of APOZ and
Friends
Neli Hadjiyska, Member of APOZ
Poland:
Ela Pomaska
Jolanta Kwasniewska Foundation
µ&RPPXQLFDWLRQZLWKRXWEDUULHUV¶
The EU Health Forum will take place on 29 - 30
June in Brussels. This year under the overall theme
of "Together for Health - a Strategy for the EU
2020" the conference aims to contribute and
increase the profile of health in all policies through
discussion between EU policy makers and
stakeholders on pressing public health issues and
their impacts on the Community. The conference is
also accompanied by a small exhibition with infostands from member organisations of Health Policy
forum and the Commission.
You can find more information about the
programme and organisation on the conference
website including the link for online registration:
http://ec.europa.eu/health/interest_groups/eu_healt
h_forum/open_forum/2010/index_en.htm#
EIWH Newsletter May 2010