CCAM founder warns delays, data gaps and unequal access are hurting childhood cancer survival in Malaysia

PETALING JAYA: Malaysia’s childhood cancer care system is riddled with delays, unequal access and a critical lack of reliable national data – gaps that are costing young lives, Children Cancer Association Malaysia (CCAM) founder and chairman Lavaniyah Ganapathy observed.

Speaking as both an advocate and a mother of a child cancer survivor, Lavaniyah said childhood cancer cases have risen over the past decade with leukaemia the most common, followed by brain tumours and lymphoma.

However, she said Malaysia still lacks an updated and transparent national childhood cancer registry, hampering efforts to track trends, survival rates and regional disparities.

“Since 2016, consistent public reporting has been limited. Without accurate data, we cannot properly measure trends, survival rates, or regional disparities,” she said, adding that in developed countries, cancer survival rates for children range between 85% and 95%, while Malaysia’s is estimated at 45% to 55%, depending on cancer type and access to care.

She also said although treatment technology and specialist expertise have improved, progress remains uneven, with delays in referrals, diagnosis and treatment continuing to reduce survival chances.

“For childhood cancer, time is survival.”

Lavaniyah highlighted the medical, emotional, financial and systemic challenges faced by affected children and their families.

On the medical front, she cited delayed diagnoses, limited paediatric oncology centres, uneven access to advanced treatment and cases where children are classified as palliative before all curative options are explored.

“Palliative care should mean supportive care alongside treatment, not early withdrawal of hope,” she said, adding that some families feel they are not given enough options or second opinions before being directed towards end-of-life care.

She also said Malaysia lacks a structured paediatric hospice system, complicating care for critically ill children.

“Emotionally, parents often face trauma and isolation, while siblings are affected by prolonged household stress. Mental health support is not standardised, leaving many families without adequate guidance. Fragmented care leads to fragmented outcomes,” said Lavaniyah.

Financial strain is another major burden, with one parent often giving up work to provide full-time care while families shoulder travel, accommodation and other out-of-pocket costs, she added.

She also pointed to disparities in financial aid schemes, many of which are tied to religion-based systems such as zakat.

“Non-Muslim children, as well as families outside specific welfare categories, often fall outside structured assistance.”

Education continuity is another gap, she added, with children undergoing treatment and missing long periods of school. 

“There is no national framework in place to ensure equal educational protection and financial support regardless of religion or socioeconomic background. Cancer does not discriminate by race or religion. Support systems should not either.”

Lavaniyah said CCAM was established to bridge gaps left by the system, providing hospital bill assistance, urgent financial aid, family support during critical treatment periods, school support, emotional counselling, early symptom awareness campaigns and advocacy for sustainable monthly donations.

“Survival is not only about medicine. It is about stability. When a parent does not have to worry about rent, food, transport or school disruption, she can focus on her child,” she said, adding that there should be a national dedicated paediatric cancer institute to centralise care, research and support.

In conjunction with International Childhood Cancer Day yesterday, Lavaniyah urged policymakers to treat childhood cancer survival as a benchmark of national healthcare strength.

“These children did not choose this fight,” she said, calling for early diagnosis, transparent registry data, equal access to care, education protection and sustainable funding. 

“Closing the survival gap from 55% to over 85% is possible but it requires political will, transparent registries, faster diagnostics, equitable support and a coordinated national strategy.”

Lavaniyah said support must go beyond sympathy.

“It is about sustainable monthly giving, corporate responsibility, awareness and empathy. I speak not just as a founder, but as a mother who has seen the system from the inside. 

“We are asking for systemic change, because every child deserves a fighting chance.”

 The Sun Malaysia