In a recent email interview with BioPharma APAC, Dr. Nirmala Bhoo-Pathy, a distinguished Professor of (Clinical) Epidemiology at the Faculty of Medicine, University Malaya, and a Public Health Medicine Specialist at University Malaya Medical Centre, delves into the profound implications of the groundbreaking ACTION study. Focused on the economic impact of cancer, the study unveils alarming statistics about the financial strain faced by cancer-stricken households in Southeast Asia. Dr. Bhoo-Pathy discusses the study's findings, shedding light on the factors driving catastrophic healthcare costs and the subsequent financial turmoil faced by vulnerable households. She also explores the study's role in advocating for more affordable cancer care and its influence on positive policy changes across the Asia Pacific region. Join us as we navigate through the economic landscape of cancer care, from financial ruin to collaborative approaches aiming to instigate positive change and improved well-being for patients across the region.

Can you elaborate on the implications of the ACTION study's results regarding the economic impact of cancer, particularly in relation to the finding that cancer diagnoses often lead to financial ruin?

The ACTION study was the first study to follow newly-diagnosed cancer patients in Southeast Asia for a year and to quantify the financial impact of cancer on these cancer-stricken households. We found that almost half of these households experienced catastrophic healthcare costs due to their cancer. Those who were diagnosed with more advanced cancer stage, as well as those hailing from lower socio-economic households were especially vulnerable to catastrophic expenditures. The major driver of adverse financial outcomes appears to be largely attributable to medical costs, including expenses for outpatient/inpatient care and purchase of drugs and medical supplies. These findings serve to highlight the need to ramp up early detection and screening programmes for cancer, as not only are early-stage cancers more treatable but also less costly compared to advanced stage cancers. Furthermore, financial protection policies need to be implemented to reduce the financial burden of cancer particularly among the socioeconomically vulnerable households. Besides medical costs, the financial burden associated with non-medical costs including transportation to and from the hospitals as well as loss of income while undergoing treatments should also be prioritised.    

How have these findings contributed to advocating for more affordable cancer care, and have they influenced positive policy changes across the Asia Pacific region?

The ACTION Study, besides examining out-of-pocket medical costs following a cancer diagnosis, also measured the ‘non-medical costs’ including transportation, accommodation, etc. Another objective of the study was also examining the impact of cancer on psychological wellbeing and quality of life. Therefore, rather than just focusing on affordable cancer care which is somewhat ‘treatment centric’, let’s frame it as improved access to cancer care that encompasses the psychosocial aspects of cancer and financial impact covering beyond treatment costs. The ACTION study also produced evidence on expenditures on traditional and complementary medicine that no other studies have examined. 

These findings have all been published and are used in many international reports aiming to improve the state of cancer control particularly in the low- and middle-income countries including: 

• Ginsburg O, Vanderpuye V, Beddoe AM, Bhoo-Pathy N, Bray F, Caduff C, Florez N, Fadhil I, Hammad N, Heidari S, Kataria I, Kumar S, Liebermann E, Moodley J, Mutebi M, Mukherji D, Nugent R, So WKW, Soto-Perez-de-Celis E, Unger-Saldaña K, Allman G, Bhimani J, Bourlon MT, Eala MAB, Hovmand PS, Kong YC, Menon S, Taylor CD, Soerjomataram I. Women, power, and cancer: a Lancet Commission. Lancet. 2023 
• Koczwara B, Chan A, Jefford M, Lam WWT, Taylor C, Wakefield CE, Bhoo-Pathy N, Gyawali B, Harvet G, Lou Y, Pramesh CS, Takahashi M, Ke Y, Chan RJ. Cancer Survivorship in the Indo-Pacific: Priorities for Progress. JCO Glob Oncol. 2023 

The bigger message that came out from the study is the need to move towards patient centred care in oncology where their needs are actively investigated and taken into account in planning cancer care to improve wider aspects of wellbeing.

In terms of positive policy change: 

• Indonesia: The government has invested in early detection programmes, cancer care coverage, and more recently patient navigation programmes.
• Malaysia: Introduction of special health insurance schemes for lower socioeconomic groups namely PeKAB40 and MySalam, which takes into account the non-medical costs associated with cancer and the need to incentivise completion of treatment.  
• Philippines: Enactment of the National Integrated Cancer Control Act (NICCA) 
• Vietnam: The findings helped strengthen the National Cancer Control Plan (NCCP) for 2015 – 2025. 

In your opinion, what role do collaborative approaches play in instigating positive change in cancer care, and how can stakeholders work together effectively?

I will focus only on financial wellbeing following cancer.

While multilevel systemic factors at the policy and provider levels serve as important drivers of financial distress following cancer, our prior work in local settings had demonstrated that there are also accompanying actionable patient-level factors.  Financial navigation is an emerging solution to address financial toxicity at the household level, which is particularly gaining momentum in the United States, where is has demonstrated success in alleviating the financial impact of cancer costs, and the associated psychological distress. 

While it is conceivable that financial navigation may also play a vital role in other settings outside the US in reducing financial toxicity, sustainable and comprehensive services are currently lacking.  This is corroborated by recent evidence from patients living with and beyond cancer in the low- and middle-income settings, highlighting challenges in connecting to financial resources, filing paperwork for insurance reimbursements, social welfare and charity assistance, as well as unmet financial needs for affordable supportive care items including breast prothesis and stoma bags, cost of transportation, care of dependents, returning to work and coping with reduced household income. 

Nonetheless, putting the needs of patients first requires a co-design approach whereby the end users (i.e., patients and their families) play active roles in shaping and guiding any interventions or programmes. Through this, stakeholders not only have a common objective to work towards to, but also ensure that any planned programmes to improve cancer will meet the needs of the patients effectively. In the current context of promoting financial wellbeing, a financial navigation programme that has been proposed as a solution by the patients in our local settings may help alleviate this issue through the collaboration of the respective stakeholders to consolidate all the different financial assistance programmes and resources into a single platform. 

Refer to: 

• Kong YC, Wong LP, Ng CW, Taib NA, Bhoo-Pathy NT, Yusof MM, Aziz AF, Yehgambaram P, Ishak WZW, Yip CH, Bhoo-Pathy N. Understanding the Financial Needs Following Diagnosis of Breast Cancer in a Setting with Universal Health Coverage. Oncologist. 2020 

• Fnu N, Kuan WC, Kong YC, Bustamam RS, Wong LP, Subramaniam S, Ho GF, Zaharah H, Yip CH, Bhoo-Pathy N. Cancer-related costs, the resulting financial impact and coping strategies among cancer survivors living in a setting with a pluralistic health system: a qualitative study. Ecancermedicalscience. 2022