UICC World Cancer Congress 2006

INDONESIAN CANCER FOUNDATION - JAKARTA CHAPTER

- POPULATION-BASED CANCER CONTROL PROGRAM IN INDONESIA -

“COMMUNITY INVOLVEMENT IN CANCER CONTROL”

INTRODUCTION

More than fifty years after Indonesia proclaimed its independence in 1945, people's health condition is still far from what is expected to be.

It is not surprising that the Government of Indonesia, the Ministry of Health in particular, is still occupied with setting its priorities in controlling communicable diseases which has a serious impact on people's well-being.

Meanwhile the community begins to notice that cancer, considered a hazardous disease, showed an upward trend claiming numerous victims. Lack of knowledge and people's unawareness towards cancer very often result in delayed medication.

The Yayasan Kanker Indonesia (Indonesian Cancer Foundation – ICF) was established to assist the Government of Indonesia in cancer control through promoting awareness, early detection, public and professional education, research and giving aid to the needy cancer patients to reduce their suffering.

The ICF as a non-governmental organization (NGO) depends on the support and assistance from the community and other related situations. Its goal in this millennium is to achieve optimum cancer control throughout the whole nation.

The mission of the Foundation is to reduce the burden of cancer patients to a minimum, and to organize programs through community participation and in cooperation with other cancer-related institutions. Today, the ICF operates in all provinces of Indonesia.

The ICF - Jakarta Chapter has the Jakarta's Governor to act as Patron and the Governor's wife as the Chairwoman of the Foundation.

IDENTIFICATION OF THE PROBLEM

Due to financial constraints, lack of infrastructure and human resources for carrying out its programs, presently the ICF - Jakarta Chapter main priorities cover 6 types of cancer :

• Cervical Cancer
• Breast Cancer
• Skin Cancer
• Lung Cancer
• Leukemia
• GIST

These priorities were set on the basis of high rate of incidence, preventable, detectable, curable, as well as helps from specific donors.

The ICF Jakarta Chapter's organizational structure consists of the following programs :

1. Professional Training
2. Research and Registration
3. Services and Rehabilitation
4. Public Education and Information
5. Organization and Chapter Development
6. Fundraising

GOALS AND TARGETS

The ICF - Jakarta Chapter's long term goal is to support the Jakarta's Government in its effort to fight cancer, by taking promotional, preventive, as well as rehabilitative and supportive activities. These aims are based on concerns about the increase of cancer incidence and the high mortality rate as a result of advanced stages of the disease. The ICF believes “ Cancer can be cured if detected at an early stage”.

Cancer control has to reach all people in all levels of life, so the target of the Population-Based Cancer Control Program is the whole population. Therefore, the ICF - Jakarta Chapter is working hand in hand with the local government of Jakarta's province from village level up to provincial level in order to reach all the Jakarta's population.

POLICIES

The Indonesian Cancer Foundation was founded in Jakarta on April 17, 1977. While the ICF – Jakarta Chapter was founded on September 29, 1986.

The Minister of Health established a National Committee on Cancer Eradication in 1989, followed by releasing Policies in Cancer Eradication within the same year.

The Integrated Comprehensive Cancer Control Program (Program Penanggulangan Kanker Terpadu Paripurna) was established in 1993 by Minister of Health and was adopted by all provinces in 1996.

In May 1999, the ICF - Jakarta Chapter made a collaboration with Koningin Wilhelmina Fonds (The Dutch Cancer Society), Wisnuwardhana Cancer Foundation in Surabaya, the ICF - North Sumatra Chapter and the ICF - Yogyakarta Chapter, to form for each region a group of Master Trainers which will enhance the activities of Population-Based Cancer Control (PBCC) Program. Since then, this PBCC team, which belongs to Public Education and Information Department in the Foundation, is in charge of all activities of the ICF - Jakarta Chapter concerning PBCC program.

RESOURCES

Cancer control has to be managed sector by sector, including the various aspects of life. Therefore, the ICF - Jakarta Chapter is doing its utmost to accommodate doctors, paramedics, midwives, social workers, educators, communicators, prominent figures in community, as well as volunteers to jointly undertake the implementation of the Foundation's program.

The diagram of hierarchy in organizational structure of ICF - Jakarta Chapter including the PBCC team is as follows :

BUDGET

All the departments in the ICF - Jakarta Chapter are trying hard to meet all the targets which are scheduled yearly. All their activities are intertwined and need a lot of money. The programs from department of Services and Rehabilitation and PBCC take the larger amount of budget than other programs in the Foundation.

Donation comes from the Governor of Jakarta (mostly), private companies and institutions, while donation from the Dutch Cancer Society goes directly to the PBCC activities (i.e. : workshops, teaching materials, free pap smear, etc).

Even though the ICF - Jakarta Chapter has regular donations, there are still many activities that have to be put aside or postponed because of financial difficulties.

POPULATION-BASED CANCER CONTROL PROGRAM

Background

The Integrated Comprehensive Cancer Control Program (Program Penanggulangan Kanker Terpadu Paripurna) was established in 1993 by Minister of Health and was adopted by Jakarta' province through Jakarta's Governor Decision Letter in 1996.

One of the basic activity in The Integrated Comprehensive Cancer Control Program is the Population-Based Cancer Control (PBCC) Program which is to cover the total population of Indonesia which is more than two hundred and fifty million people.

The ICF Population-Based Cancer Control (PBCC) Program is involving a lot of people in its activities which are meant for the people, done by the people and to serve the people. In this context, the rule of ICF is to assist the provincial level of government in each provinces in Indonesia.

Volunteers

The first step in PBCC program is to choose the volunteers. Volunteers may originate from all aspects in communities; such as : health providers (specialists, general practitioners, midwives, paramedics, etc), government officers, social workers, private employees, self-employed persons, housewives, etc. In reality, more than fifty percents of our volunteers are housewives who belong to PKK organization ( they are called PKK cadres).

PKK (Pemberdayaan dan Kesejahteraan Keluarga) Organization or the Family Welfare Movement, is one of the most important supports in PBCC program, consisting of ladies volunteers is a unique organization and probably the only one in the world. This organization starts from the smallest community in village level up to the provincial level. Their activities are mainly to focus in increasing the welfare and health of the people in the areas where they live. Therefore, this organization is acknowledged and supported by the government.

PBCC volunteers should be people who have spare time, eager to learn about PBCC and have willingness to teach and help others. The PKK cadres and the Primary Health Centers in village areas help a lot in selecting these volunteers.

The candidates for volunteers are selected by interviewing them one by one to assess whether they are really interested and suitable for this activity.

Training

The second step in PBCC program is to train the volunteers on topics about specific cancers (the 10 ten most-found cancer in Indonesia) – the risks, general treatments and rehabilitation; the primary and secondary prevention; how to motivate other people; and the HHPC (Hospice Home Palliative Care) program which helps terminally staged and incurable patients at their homes to improve their quality of lives. Training is done by specialists, psychologists, PBCC team and other related fields. After the training, they will be called PBCC teachers if they can present or show their abilities to teach or to inform other people on Public Cancer Education topics.

PBCC Team from the ICF – Jakarta Chapter consists of trainers called Master Trainers who are mostly general practitioners that have been trained by specialists from national university and from universities abroad.

Public Cancer Education (PCE)

PBCC program aims to improve people's knowledge through PCE (Public Cancer Education), so it contains basic information and awareness about early signs of specific cancers and how to prevent them. PCE is mostly to let people know that some cancers can be prevented, some can be detected early and to motivate people to have healthy life style – free of cancer.

PCE sessions are held by PBCC teachers after they have finished with the training. Each PBCC teacher is expected to give PCE information to a group of people at least once a month and will be monitored by PBCC team.

PBCC team will evaluate PBCC teachers while giving PCE at least twice. Usually, PBCC teacconsidered passed after the second evaluation of PCE.

PCE is given as often as possible to all group of people; i.e. : workers/labors, housewives, school children, government employees, private employees, etc.

PBCC teachers are provided with teaching materials, such as : slides, posters, flipcharts, leaflets, booklets, etc that they can distribute free of charge.

Cascading Networks

Cascading networks are established to monitor all the works of the PBCC teachers. So, by using this network, the ICF - Jakarta Chapter is able to know and record all activities of PBCC teachers.

Diagram of the cascading network :

For illustration :

In Jakarta province, there are 1395 PBCC teachers who have been trained to give PCE, 40 PBCC Supervisors whose each monitors about 40 PBCC teachers and on top there are 6 Master Trainers who plan all of PBCC activities.

Other provinces where PBCC programs have been well established are in North Sumatra, West Java, Yogyakarta, East Java, Bali, North Sulawesi, South Sulawesi and East Kalimantan.

They all have this model of network to monitor their PBCC teachers' activities. This model proves to be effective in vast areas like Indonesia where the population is quite big and scattered.

Support

The PBCC program has supports and receives fund from the government, donors, foreign foundations / institutions and from fund raising dinners.

Future

The Indonesian Cancer Foundation is the largest NGO focusing on cancer control in Indonesia by involving communities.

ICF volunteers are our driving force. Volunteers have dedicated their time and efforts to serve throughout the country. Without their time, energy and skills, we could not provide our services.

The generosity of the donors, no matter how small the donations are, are most welcome to sustain the ICF PBCC programs with a vision of an optimistic future, in which a death caused by cancer will become a rare event.