Making a difference with data-driven advocacy

The burden of cancer in Indonesia has been rapidly increasing, with 396,914 new cancer cases and 234,511 cancer-related deaths in 2020, compared respectively to nearly 350,000 new cases and just over 207,000 deaths in 2018. Women's cancer, notably breast and cervical cancers, are the most prevalent.  

The Indonesian government has long been focused on women's cancer, recently updating legislation for breast cancer and cervical cancer control, targeting women aged 30-50 years. The Ministry of Health has reported that breast cancer early detection coverages still low (10.77 %) and approximately 70% of patients who visit hospitals are diagnosed with an advanced stage of cancer, which means they are less likely to be treated successfully.  

In addition, access to diagnosis and treatment is inadequate. For instance, the drug trastuzumab is not guaranteed by the National Health Coverage/Social Security Agency of Health, despite its proven effectiveness in treating HER2-positive breast cancer and the fact that it is listed by the World Health Organization as an essential medicine. Health guidelines in Indonesia only guarantee eight cycles (6 months) of treatment with trastuzumab for advanced stage breast cancer patients.  

Since 2018, members of the Indonesian Cancer Information and Support Center Association (CISC), especially those who are breast cancer HER2-positive patients, have been advocating for trastuzumab to be guaranteed but their efforts have not been successful. CISC then joined UICC’s Patient Group Mentoring programme in 2020-2021, which focused, among other topics, on the importance of data for effective policymaking.  

With a grant received from UICC in 2021, CISC organised an educational session on "Evidence Based Advocacy: Making a Difference." This event raised participants' awareness of the importance of good cancer data quality. The workshop equipped them with basic knowledge as well as the skills to use this knowledge and pass it on to other CISC members.  

CISC then collaborated with the Center for Health Policy and Management (PKMK) Faculty of Medicine, Public Health and Nursing (FKKMK) at Gadjah Mada University to conduct research related to the journey of treatment and recurrence in HER2-positive breast cancer survivors in Indonesia. The aim of the research was to identify obstacles in obtaining optimal cancer management, covering early detection, diagnosis and treatment as well as the socio-economic consequences experienced by HER2-positive breast cancer patients in Indonesia.

Through its specific cancer sub-groups, CISC has helped to create better connections and networks in the cancer community and played a significant role in mobilising patients to participate in the study. Different channels of communication were used to educate members on the importance of the study, including virtual meetings, social media, a WhatsApp group and individual interactions. This enabled a swift recruitment of patients and members of the cancer community to participate in the study. However, there were still challenges in data collection such as ensuring the patient’s understanding of the questions and the objectives of the study. 

The study has now concluded and a policy brief is under development which will be used for the dissemination of results. The findings from the study have been able to validate patient’s and the wider health system’s pain points  in breast cancer HER2-positive management affirming several issues previously brought to attention by patient organisations prior to the study:  

1. Breast clinical examination needs to be improved, with an insufficiency of available diagnostics facilities in certain regions. 

2. Early stage breast cancer patients with HER2-positive are not getting access to standard of care (anti-HER2) despite studies indicating that patient access to treatment with anti-HER2 has proven to lower recurrence rate amongst patients. 

3. HER2-positive breast cancer involves significant socioeconomic impact. 

Recent medical developments in early HER2-positive breast cancer therapies has indicated that the recommended treatment is a dual blockade of anti-HER2 at the neoadjuvant setting ("given as a first step to shrink a tumour before the main treatment, which is usually surgery" – NCI). However, it is very challenging for patients in Indonesia to receive this treatment. Most are given the ‘classic’ anti-HER2 treatment, and are not given trastuzumab as it is not yet covered in the UHC. Another important aspect in the success of a neoadjuvant treatment in HER2-positive breast cancer is the availability of a competent multi-discipline team, this also remains a challenge. 

The government has identified the requirement of more specialists and has offered scholarship programmes for specialists and sub-specialists in oncology. Coupled with efforts to implement necessary regulations to strengthen multidiscipline implementation and guaranteed access to the required standard of care in the UHC, it is hoped that through these positive steps better care are offered to patients in the future. 

To improve survival rates and ensure equitable access to care, it is crucial for patient organisations to play a vital role in advocating for patients and bringing important findings to the attention of policymakers. Through increased support and engagement, these organisations can empower patients and their families to become active participants in their own care and contribute to the ongoing fight against breast cancer. 

The journey continues as we learn from every single step of translating individual patient experience and  story into meaningful data at scale.