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Biba Dodeva
President&Founder
NO screening programs
Long waiting lists for detection, surgery,
treatments
Lack of medical equipment
NO Information about patients rights
NO cancer awareness
NO psychosocial support for cancer patients
NO Access for new treatments
NO National Cancer Control Plan in Macedonia
The health system has always been a challenge in Eastern Europe
but in The Republic of Macedonia even more so. There was a need
for some changes and reforms in the countries health care system.
In particular, there was a demand in the area to assist and support
people who are fighting the battle with cancer. The citizens of
country needed an organisation to fill this gap in the health sector
and civil society, to collaborate with all involved stakeholders
(ministries, government and citizens) and organisation who will
support the patients and be the voice of the people.
July 2007, the nonprofit organisation "BORKA - For each new day"
was founded as a non-government and nonprofit organisation for
support citizens, patients, their families and health organisations
fighting against all types of cancer in The Republic of Macedonia.
BORKA is firmly committed to actively
contribute in the fight against all types of
cancer, following the best practices and
actively participate in the creating a well-
informed, educated, healthy population,
advocate for the patient’s rights and their
interests in order to actively participate in
treatment decisions, to raise awareness of
the risk and challenges, to set in motion all
mandatory resources in order to achieve
our vision and to produce the country
with significant increased number of
survived cancer patients.
The mission and one of the main task of the organisation is to be partner and support
health sector in it’s efforts for establishing a strong and functional health system able
to supply all the requirement of the citizens, providing adequate support and patient -
centred care, with the main focus on the health care of the cancer patients.
During the years, we have been active
to achieve our goals through 3 different
categories:
1. Education and information,
2. Direct psychosocial support for
cancer patient,
3. Institutional fight
PREVENTION, EDUCATION, EARLY DETECTION
•Raising awareness for all types of cancer, the importance of prevention
•Increasing the early detection and increase survival rate,
•Lobbying for implementation of screening programs
•Changing the negative perception/attitude on the disease
•Creating a new health care culture in Republic of Macedonia
•Advocacy activities and identify the gaps and problems in the health system
•Making improvements in the quality of life of cancer patients
•Re - socialisation of cancer patients and empowering patient rights
ADVOCACY ACTIVITIES
• Cancer priority in health care system in Macedonia
• Overcoming the social economic cancer burden
• Constant monitoring and participation in the process of
approximation and harmonisation with the European
legislation and assessment of its impact on the social
and economic system
• Promoting, participating and contributing to the reforms
in all spheres of the social and health system of the
Republic of Macedonia
• Promotion of public health
• Implementation of world protocols in the treatment of
cancer patients
• Encouraging and strengthening cooperation with
domestic and foreign organisations & institutions that
have the same or similar goals and tasks.
• 2007 - 2008 Implementation of a national pilot prevention
project for breast and cervical cancer
• 2008 Launching the First mobile SOS help line (24/7) for
patients for all types of cancer
• 2009 Free surgical and oncological treatment (chemo &
radiation) for all people with cancer
• 2010 Introduction of national opportunistic screening for
early detection of CRC cancer (free FOBT tests)
• 2011 Implementation of Commission for patient’s rights in municipalities (Skopje)
• 2012 Implementation of screening program for early
detection and detection of cancer of the cervix (ongoing
since 2012 -letter invitation form age 24-60)
• 2013-2014 Implementation of opportunistic screening for early
detection of CRC cancer (free FOBT tests)
2007 - 2018 - BORKA actively participated in promotion and
contribution to reforms in health care system in Macedonia and raised
awareness for all haematological and oncology malignancies
SOS HELP LINE
075 22 88 99
• 2015 Implementation of a national screening program for early detection and
detection of breast cancer (age 50-65)
• 2015 Assignment of breast external prosthesis covered by HIF
• 2015 Assignment of breast reconstructions (40 in primary and 48 in mastectomy
secondary plastic reconstruction) covered by HIF
• 2010 - 2018 Donation of over 900 wigs for women with low social status
During the years, we have been active to achieve our goals and all of it can be summarised in 3 different categories:
Education and information, Direct psychosocial support for cancer patient, Institutional fight
• Europa Donna- Breast Cancer Coalition
• Europa Colon - Colorectal Coalition
• Lymphoma Coalition
• Europa Colon
• ECCA - European Cervical Cancer Association
• ECPC - European Cancer Patient Coalition
• MPE - Myeloma Patient Europe
• MPNE - Melanoma patient Network Europe (MPNCEE)
• IKCC - International Kidney Cancer Coalition
• ENGAGe, UICC, ESMO
We strengthen cooperation with domestic and foreign organisations and
institutions that have the same or similar goals and objectives in Macedonia
and EU and now we are members of
Veles, Strumica, Kocani, Vinica, Tetovo, Gostivar,
Kavadarci, Resen, Ohrid, Bitola, Prilep, Makedonski Brod
www.borka.org.mk
The visitors on our web page can find lot of
educational texts about different types of cancer, early
diagnosis methods and treatment and healthy lifestyle
Association for fight
against cancer
“BORKA – for
each new day “
www.borka.org.mk
SOS LINE 075 22 88 99
Macedonia > 2.000.000 population
EVERY SINGLE DAY
20 people are diagnosed with cancer
(In 2012 the number of new cases of all types of cancer patients is 7330**)
13 people die of cancer (2012 the figure is 4625* deaths from cancer )
Macedonia is on 3rd place in Europe in the death rate from cancer,
and 7th in the world.
Cancer is a second cause of mortality in MK!
647 new Melanoma patients in 2017
480 new cases in first 6 months in 2018
Youngest patient - 13 year old kid!
• **EUCAN (International Agency for research on cancer & WHO) http://eco.iarc.fr/eucan
• Ferlay J, Steliarova-Foucher E, Lortet-Tieulent J, Rosso S, Coebergh JWW, Comber H, Forman D, Bray F. Cancer incidence and mortality patterns in Europe: estimates for 40 countries in 2012. Eur J
Cancer. 2013 Apr;49(6):1374-403. doi: 10.1016/j.ejca.2012.12.027.
1 Hungary 152.1
2 Serbia 147.8
3 Macedonia 141.6
4 Montenegro 139.0
5 Croatia 136.7
6 Poland 131.0
7 Lithuania 129.0
8 Latvia 128.8
9 Romania 127.1
10 Slovakia 125.8
GLOBOCAN
MORTALITY IN EUROPE IN 2012
Hurdle/Problem statement
• Cancer is not a HC priority (budget for Cancer drugs constantly is decreasing, -37% in the last 5 years)
• Reimbursement process for new innovative drugs blocked in the last 10 years (1 “new”cancer drug reimbursed)
Population ~2 mil
GDP (USD bio) 10.2
Healthcare as % of GDP 6.4%
Government HC expenditure/per capita (USD)
215
Total HIF budget (USD mil/2015) 470
Total HIF drug expenditures (mil USD/15) 71/15%
Total Cancer budget (mil USD/2015) 9.6/13.5%
Government HC priorities: Construction – Equipment - Education
CHANGING OF STAKEHOLDERS/POLICY MAKERS
• Update of new, effective therapies and innovative drugs, available in
Macedonia on Positive List (reimbursed)
• Lack of funding and absence of evidence of health infrastructure
• Health services improvements (screening is not functioning, long waiting
list for mammogram exam, CT, MRI, histopathology results…).
• Lack of educated radiologist, oncologists, pathologists, and Cancer
nurses
• Health Technology Assessment
• Psychosocial support for cancer patients&their families
• Palliative care for cancer patients
• National Cancer Register
• National Cancer Control Plan
Cancer to become priority of the
Government’s HS agenda
Increasing the Funds for new
Cancer Treatments
2016 - 2017 - 2018 - 2019
Adopting National Cancer
Control Plan
Main goal
Establish Oncology / Cancer as a priority in HC policy in order to:
• implementation of strategy for prevention and follow up
• raising awareness and early detection,
• improving quality life of cancer patients,
• decrease mortality rate and increasing survival rate,
• Prevention does not save patients with advanced disease, so we need to increase reimbursement funding and enabling access to new innovative treatments.
•TO SAVE LIVES!
• Task force established
• Identifying, mapping of Stakeholders
• Developing a Strategy
• Whom to partner with?
- Authorities?
- HCPs?
- PAGs?
Pharma?
….?
• Organising round table to detect current situation and challenges
• Coordinating stakeholders, maximising resources and making an
effective health system in order to provide early diagnosis, adequate
treatments and access for new therapies that will saves lives
• Partnership for cooperation between the state bodies, the health
institutions and patient organisations in planning, preparation and
implementation of strategies, criteria, standards, policies and practices in
the health care system
• Involvement of civil society in cancer control activities, participation in
national steering committee and participation of PO representatives in
policy making, commission for updating of positive list, etc..
Generating more funds
Increased expenditures for drugs into the total HC budget - centralised procurement
Additional (alternative funds)– Healthy Denar (alcohol, cigaretes, junk food...), Establishing of the National Cancer Fund
Re-investment of the saving gained by public procurement processes and governmental measures (Pricing,…)
Capacity building - Regular meetings - Trainings and capacity building - International exposure - Develop joint communication platform - Develop solutions for the problem
Tools used - Stakeholders mapping - Healthcare & economic trends - Patient access level in Mk benchmarked to
other countries - Decision makers & influencers - Objectives & strategies - Web page and social media
Extensive promotion of CY - Emotional campaign in the public - CY declaration - Key messages development - Maximising the media presence and
coverage - Public debates on cancer burden - Regular meetings with the authorities
Engagement more supporters - First Lady main sponsor - International community in Mk -
Ambassadors wife’s (strong support from the US Embassy)
- Increase the supporters among the politicians and celebrities
- Pre-election activities
Internal tactics and approaches
External tactics and approaches
First Lady announcing Cancer Year Campaign
Measurable impact
• Oncology has became one of the most covered HC area with around 150 publications and broadcasts in 2016 (even on most prominent national TVs)
• More than 3000 signatures collected by CY declaration
• Several meetings of working group between MoH/HIF dedicated for Oncology have been held
• Created separated special short-term Cancer Fund for 3 Cancer areas (Zelboraf , Pembrolizumab, included)
• Massive emotional PR campaign
• Cancer Year announced in the public by the First Lady • Launched CY declaration • Extensive media presence • Separate fund for oncology drugs
Next steps and KPIs
• Define and agree on priorities in Oncology among Stakeholders involved
• Pre – election strategy • Debate in the Parliament for Cancer Burden in
MK by Q1 2019 • NCRegister to be adopted by the end of Q1
2019 • Positive list updated - Cancer Fund to be
formed by Q1 2019 • National Cancer Plan to be in force in Q2 - Q3
2019
Awareness Campaign
Cancer year. Lobbying for new drugs, Regular meetings - strategy.First access to some new innovative drugs
2017 Second access for innovative drug
Lobbying for implementation for NCCP, NCR.
First meetings /workshops for implementation of NCCP, NCR…
2016
2017
2018
2019
2007-2018
Positive list updated
NCR adopted
NCCP implemented
HOPE :)
No matter how hard we try, some steps in the process cannot be rushed.
Be proud of the steps you've taken.
because you've worked very hard to get to
this point.
SOCIAL SERVICES FOR CANCER PATIENTS
• Recognition of as a social category and social inclusion of cancer patients
• Promotion of an integrated approach to malignant diseases
• Psychosocial support and resocialization of cancer patients
• Orthopaedic aids, prosthesis and support for cancer patients(wigs, bra, external
protheses, glove for lymphedema etc.)
PROMOTION OF KNOWLEDGE AND ACCESS TO EDUCATION
• Improvements in professional capacities and knowledge of medical professionals
• Organising national, public campaigns for raising awareness of cancer
• Education and information, empowering patient’s with knowledge and education
which includes seeking out information about their own illness,
• Institutional sustainability and capacity building of the NGO’s
• Establish effective regional and international cooperation
• Stimulation for research in the field of cancer
INSTITUTIONAL FRAMEWORK FOR CANCER
• National Register of Cancer
• Implementation of a National Cancer Control Plan in Macedonia
• Committee on Cancer in the Ministry of health from PAG’s representatives
• Synchronising the law for drugs, issued from European agency EMA and
following the recommendation from WHO
AVAILABLE, QUALITY HEALTH CARE FOR CANCER PATIENTS
• Advancing the prevention and diagnosis of cancer, early detection,surgery,
treatment, access to therapies
• Implementation of protocols for follow up cancer patients
• Improving the control and monitoring of the treatment of cancer patients
• Improving access to clinical trials
• Creating a conditions for access to contemporary and adequate treatment
and new therapy opportunities
Key Success Factors
Clearly define expectations
Partnership and regular dialogue with the Authorities and other KS
Key insights • Cross functional teamwork is essential • All relevant stakeholders should be involved - Proper mapping
of stakeholders is crucial • Clear vision and persistency- dining your main goal! • To achieve win-win solutions for all Stakeholders involved,
NOTHING HAPPENED OVER NIGHT! • Mass media support and involvement is important to achieve
positive outcomes and support from the public • Do not complain and criticise all the time - GIVE th solutions,
be partner with the policy makers!
Only together we can achieve changes!