Paediatric cancer is a heartbreaking reality, one that profoundly impacts the lives of children and their families. Despite significant advancements in treatments, it remains a leading cause of death in children worldwide. In the United States, around 14% of children diagnosed with cancer die within five years, while survival rates in low- and middle-income countries (LMICs) are much lower, ranging from 14% to 45%, according to the National Cancer Society of Malaysia (NCSM). Expensive treatments often place care out of reach for many families, especially in LMICs, where access to cutting-edge therapies is limited.
But what exactly is paediatric cancer? Otherwise known as childhood cancer, it is a rare, life-threatening disease that affects children aged 0 to 14 and teenagers aged 15 to 19, with 70 out of every one million children diagnosed annually. The risk factors are unclear, but it begins with genetic mutations that cause cells to grow uncontrollably, potentially spreading to other parts of the body.
Types of Paediatric Cancer
Childhood cancers come in various forms, each with unique symptoms and treatment challenges:
Leukaemia
Leukaemia accounts for 28% of childhood cancers, originating in the bone marrow and producing excess ‘blasts’ that disrupt normal blood cell production. Acute lymphoblastic leukaemia (ALL) and acute myeloid leukaemia (AML) are the most common types. Symptoms include prolonged fever, bone pain, fatigue, and weight loss. A Universiti Sains Malaysia (USM) study in 2020 reported three-month survival rates of 89.3% for ALL and 72.9% for AML.
Brain and Spinal Cord Tumours
These tumours can be benign or malignant, depending on their type and location. Low-grade gliomas and medulloblastomas are common forms. Symptoms like worsening headaches, seizures, and nausea are typical. Treatments involve surgery, radiation, and chemotherapy, with a five-year survival rate of 75%, according to the American Cancer Society.
Neuroblastoma
This cancer affects the nervous system and primarily impacts children under five. Symptoms include abdominal lumps, fatigue, and altered bowel habits. While the five-year survival rate is around 81%, it varies based on factors like age and tumour spread. Surgery is effective only for early-stage neuroblastomas.
Wilms Tumour
Affecting the kidneys of children aged three to four, Wilms tumour has a high five-year survival rate of 90%. Symptoms include a hard lump in the belly, blood in urine, and fever. Treatments usually involve surgery and chemotherapy.
Other childhood cancers include bone cancers, retinoblastomas (eye cancer), rhabdomyosarcomas (muscle cancer), and lymphomas.
Treatment Options and Costs
Advancements in treatments like chemotherapy, radiotherapy, and immunotherapy have saved countless lives, but their costs remain a significant barrier.
Chemotherapy: A mainstay for treating cancers like leukaemia and brain tumours, chemotherapy is harsher on children due to their ability to tolerate higher doses. Monthly costs range from $1,000 to $12,000 (RM4,100 to RM 49,200) in the U.S.
Radiation Therapy: Rarely used in children due to side effects, radiation costs between RM5,000 and RM30,000 per session.
Immunotherapy: Costs can reach RM21,000 to RM45,000 per session, with side effects like swelling and pain.
Targeted Therapy: Used for leukaemia, this option costs between RM10,000 and RM20,000 monthly, causing side effects such as liver issues and fatigue.
Surgery: Prices for procedures like tumour removal range from RM5,000 to RM50,000 in Malaysia.
The Financial Toll
Cancer’s financial burden extends far beyond treatment costs. Non-medical expenses, such as travel, lodging, and lost income, often account for nearly half of a family’s cancer-related expenses. A Malaysian study found that non-medical costs made up 46.1% of total cancer-related expenses for lower-income groups.
Out-of-Pocket (OOP) Expenses and Employment Disruptions
Parents often face significant disruptions in their working lives. Studies show 94% of families experience changes in work status, with one parent quitting their job in 42% of cases. Mothers are disproportionately affected, with 64% resigning compared to 16% of fathers. This loss of income, often exceeding 40% of household earnings, forces families to choose between paying for treatment and meeting basic needs.
Additional costs like feeding tubes, wigs, dietary supplements, and mental health therapy further strain families. Mental health sessions in Malaysia cost between RM50 and RM200, though NGOs like NCSM provide free services for caregivers and survivors. Siblings of sick children often feel neglected, causing estrangement and behavioral challenges.
Even after treatment ends, the financial strain persists. Families may borrow money at high-interest rates, sell assets, or reduce medication dosages to stay afloat. Many face years of debt repayment and reduced savings.
Available Financial Aid in Malaysia
Malaysia’s government and nonprofit organizations provide some relief:
Majlis Kanser Nasional (MAKNA) assists financially-challenged patients by providing monthly allowance, medical equipment, medication and ancillary items to enable them to cope with cancer.
Sunway Cancer Centre Support Fund provides free screening, radiotherapy discounts and subsidies for eligible patients at Sunway Cancer Specialist Centre.
Sarawak Children’s Cancer Society (SCCS) subsidises medical drugs, consumables, lab tests, medical equipment and ward upgrading. It also takes care of other needs such as distributing diapers, providing ‘halfway homes’ and caring sessions as well as supporting bereavement costs.
IHH Healthcare Malaysia offers free radiotherapy and radiosurgery for cancer patients from selected government hospitals in KL, Penang and Johor.
Persatuan Sokongan Kanser Kanak-Kanak (CAKNE) provides financial aid for B40 patients.
National Cancer Society of Malaysia (NCSM)’s Children’s Home of Hope offers comfortable accommodation for children undergoing treatment and their caregivers.
Children Cancer Association Malaysia (CCAM) raises funds through charity runs, media coverage and social media campaigns to help families pay for cancer treatment and medications not covered by insurance or the government.
To make up for remaining costs, some have started crowdfunding initiatives within their community for treatment, research and awareness, such as Burpees4Aida (Malaysia), Saving Jack (Australia) and the Band of Parents (New York).
Families going through the difficult journey of paediatric cancer need more than just medical care—they need compassion and support in every aspect of their lives. Flexible workplace policies that allow parents to be there for their children, financial counseling to help them navigate the costs, and expanded subsidies for everyday expenses could provide much-needed relief. Even small steps, like affordable housing near treatment centers or ride-hailing partnerships to ease transportation, can make a big difference in lightening their load during such a trying time.
Improved awareness of financial aid programs is crucial. Studies highlight that parents often struggle to navigate healthcare systems and access available resources. Providing clear, accessible information could empower families to make informed decisions.
Childhood cancer is a devastating diagnosis that impacts families emotionally, physically, and financially. While treatments continue to improve, they often come with prohibitive costs and long-term challenges. A collaborative effort between governments, NGOs, and communities can help lighten the financial load and provide a pathway to hope for families navigating this difficult journey. Together, we can ensure no child’s life is cut short due to financial barriers.
By
Serene Inulia,
Charisma Movement Volunteer.
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