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

info@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!