KLANG: A childhood cancer advocacy group has urged authorities to take stronger action to improve care and outcomes for children with cancer, highlighting gaps in data, diagnosis and access to treatment.
Children Cancer Association Malaysia president Lavanyah Ganapathy said the country lacked a properly updated and transparent national childhood cancer registry, which limited the ability to track trends, measure survival gains and identify regional disparities.
“From 2016 until now, consistent public reporting has been limited. Without accurate registry data, we cannot truly measure trends, survival improvements, or regional disparities,” she said.
Lavanyah noted that survival rates in developed countries can reach 85% to 95% for childhood cancers, while Malaysia’s rates remain an estimated 45% to 55%, depending on cancer type and access to care.
“There have been improvements in treatment technology and specialist expertise, but progress is uneven with early diagnosis remaining a major issue,” she said.
She attributed the gap to uneven progress in treatment technology and specialist expertise, persistent delays in referral and diagnosis, and slow initiation of treatment.
“For childhood cancer, time is survival,” added Lavanyah.
Other challenges identified, she said, were limited number of paediatric oncology centres, inconsistent access to advanced therapies, children being classified as palliative too early without full exploration of curative options, and a lack of structured paediatric hospice systems.
“Palliative care should mean supportive care alongside treatment, not early withdrawal of hope.
“Some families feel they are not given enough options or second opinions before being moved toward end-of-life pathways,’’ said Lavanyah, who is also a parent of a childhood cancer survivor.
To address these issues, the NGO is calling for a centralised National Childhood Cancer Institute to coordinate the various requirements linked to effective handling of childhood cancer care and management.
“I would like to urge our policymakers to understand that childhood cancer survival reflects the strength of a nation’s healthcare system.
“Closing the survival gap from 55% to above 85% is possible,’’ said Lavanyah.
She added that all that was required to strengthen the nation’s approach to effective childhood cancer management was political will, registry transparency, faster diagnostics, equitable assistance and a coordinated national strategy.
Lavanyah also said there was urgency in addressing these issues because there was a steady rise in children being diagnosed with cancer in Malaysia, with leukaemia remaining the most common, followed by brain tumours and lymphoma.
