No civil society organisation is an island: Facing the cancer challenge in Indonesia

6 September 2018
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Professor Aru Sudoyo, Chairman

Indonesian Cancer Foundation (ICF)

Professor Aru Sudoyo, Chairman of Indonesian Cancer Foundation (ICF), discusses the challenges the cancer community faces in delivering treatment and care in Indonesia, and the ways civil society and government are overcoming these obstacles together to achieve Treatment for All.

ICF, founded in 1977, is committed to its vision of an Indonesian community without cancer and has as its motto “cancer can be cured if detected at an early stage.” Its programs have been, and still are, early detection, the education of people, assisting with access to some chemotherapy drugs, and palliative care training.

In 2016, I was given the responsibility of Chairman of ICF, placed at the helm of the organisation. My first priority was to assess the cancer situation in Indonesia. As a medical oncologist working with cancer patients, I was aware of several things:

  • Cancer awareness is low – among the populace and medical profession in general
  • Cancer patients, mostly due to the aforementioned situation, present themselves at a late stage, with 70% presenting with advance and metastatic disease
  • Treatment of cancer patients can differ across regions, depending on the availability of facilities and appropriate technologies in the country
  • On reaching the end-of-life palliative phase, patients and their families are afraid to go home from the hospital for fear of a painful death and reduced quality of life.

In a large archipelago of around 17,000 islands and a population of more than 260 million people, reaching everyone, whether it be for awareness raising, early detection, treatment or palliative care, can be a challenge, and our vision sometimes a mirage. While our government has a national cancer control programme and commitment to universal health coverage, implementation is challenging due to the sheer size of the population, the very large body of water separating the islands of the archipelago, and the still-present health problems of a developing and tropical country, such as infectious diseases and maternal and child health. How would ICF maintain cancer’s position as a priority on the health agenda? How would we reach everyone with awareness and ensure earlier detection? Where could we be impactful?

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Working together for solutions

As a first step, we have focused much time and resources on the development of a home palliative care programme. Only 1% of our population has access to palliative care, and while it may take time for earlier detection, and more standardised treatment, we knew we had the immediate resources to begin training carers to support an improved quality of life for patients in their homes. Our training programme is now recognised by the Ministry of Health, and more and more of those we train are becoming trainers themselves in an effort to rapidly extend our reach across the islands.

"ICF is aware that the fight against cancer can only succeed if all components of society are involved. Just as no man is an island, ICF is not an island, and must work together with government, professional groups and patient groups to be successful in facing the cancer challenge in Indonesia."

For this reason, we are also an umbrella organisation with 96 branches, with many of our activities centered in Jakarta, the nation’s capital city. In general, most chapters are based in the two most populated islands, Java and Sumatra, and some in Sulawesi (Celebes) and Kalimantan (Borneo). ICF’s chapters are mostly chaired by leaders of local governments, which is an advantage.

We are already working together with the Ministry of Health, the Indonesian Society of Oncology, and survivor groups. This is critical because working together has helped to fight various causes, like access to medicines and the education of communities – including the survivors themselves – to improve cancer awareness. For instance, working toward universal health coverage, we know we still need to improve our national insurance system for increased availability and accessibility of cancer drugs and opioids.

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Now, as one of the first Treatment for All countries, ICF represents Indonesia in developing and participating in a national advocacy campaign calling for improved access to cancer services. This has increased our commitment to our efforts, however mighty the challenge, and reinforces our motivation to engage with others in Indonesia around cancer control. Since May 2018, we have worked with a coalition of 13 survivor groups advocating for the availability of the drug Trastuzumab / Herceptin, which was removed from our insurance coverage in April but which the government agreed to reconsider as a consequence of our recent advocacy. We have also been advocating for hospice care law or regulation to support and govern our activities toward improved palliative care. Together, with the Ministry of Health, we have resolved to include hospice care regulation as a key activity with the green light to begin next year.

Not only is there this national engagement, but we are now connected to organisations in other countries working on Treatment for All. We know we are not alone, and our efforts are part of a global effort to reduce the cancer burden. Looking optimistically to the future, ICF is in the process of harnessing the potential of those working on cancer already, nationally and internationally. Alone, perhaps we would not succeed, but, together, who knows what may be possible? After all, we are a country of 17,000 islands and 260 million people, that’s a huge untapped resource for progress and change if we work together.

 

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About the author

Professor Aru Sudoyo is a practising medical oncologists in Jakarta, affiliated with the University of Indonesia, and is currently Chairman of the Indonesian Cancer Foundation and President of the Indonesian Society of Oncology. He divides his time between the two organisations and the care of cancer patients.

Last update: 
Thursday 1 November 2018
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