“What is missing is an integrated strategy that treats medical and non-medical costs of illness as two halves of the same problem, where if one side remains uncovered, patients pay the price anyway” - Dr. Nirmala Bhoo-Pathy
Maria wakes before dawn to catch the 6am public bus from her village to the district hospital. As a lifelong diabetic, she knows the routine well: check her blood sugar, wait hours to see her doctor, collect her insulin and other meds, and finally make the two-hour journey home before the buses stop running. Today, she has spent RM 15 on bus fare, RM 7 on a simple meal, RM 10 for someone to ferry her son to school and back, and RM 70 in unpaid time off from her market stall. Even though her insulin, other medications and doctor’s visits are “free”, by the time she reaches the clinic doors, Maria has already paid nearly 10 percent of her monthly income.
Maria is not alone. Across the country, thousands of households with chronic illnesses quietly shoulder similar “side-costs” of care for transport, child-minding, half-way meals and lost wages. For many, these hidden expenses accumulate until appointments are skipped, medication schedules slip and health deteriorates.
Behind Maria’s journey lies a health system built on solid but stretched foundations: hospitals equipped with fancy machines, radiation centres and advanced labs; a workforce of specialist doctors and nurses trained over years; and supply chains that deliver medicines to the smallest rural clinics. Yet daily pressures including maintenance costs, crowded waiting rooms, inevitable equipment failures and a steady influx of costly new therapies, from cancer immunotherapies to cardiac devices push those foundations to their limits. In response, the health system has begun negotiating bulk drug discounts, backed local production and research on generics and biosimilars and piloted drug dose-reduction studies. But these measures barely scratch the surface of a strained health system.
A Four-Part Action for Genuine Access
Establish a Ring-Fenced Health Social-Needs Fund
The Social Security Organisation (SOCSO) already protects formal-sector workers against injury and income loss, but it does not cover the transport, lodging or caregiving costs that hit many patients, especially those outside the formal workforce. A ring-fenced Health Social-Needs Fund therefore would fill that gap. Creation of a dedicated fund, financed by a fixed share of tobacco, alcohol and sugary-drink excise revenues and matched corporate contributions would cover transport vouchers, lodging stipends, day-care grants, mobile-data subsidies, and short-term income support during serious illness.
Why it matters. Sin-taxes already dissuade harmful consumption. Earmarking a share of the revenue makes that deterrent doubly useful by redirecting funds to people harmed by illness. Corporations gain tax clarity and goodwill, while patients receive timely support for the true out-of-pocket costs that sink household budgets.
How it would work. Annual sin-tax receipts feed a dedicated account that is legally protected from diversion and are matched by tiered corporate levies. Funds are disbursed through a digital wallet or voucher system administered by the social-welfare ministry, allowing real-time payments for bus tickets, mobile-data top-ups or emergency wage support.
Forge Cross-Sector Partnerships
True cross-sector partnerships must bind transport, social-welfare, finance, labour and health ministries: subsidised shuttle services and verified medical-fare discounts should sit alongside guaranteed multi-year wage-replacement schemes and employer tax credits for treatment absences.
Why it matters. Illness disrupts far more than clinic schedules; it impacts transport networks, workplace productivity and household incomes. Solutions therefore require shared ownership across ministries and private employers, not piecemeal programmes siloed in health.
How it would work. A Cabinet-level memorandum of understanding codifies roles: the transport ministry funds long-distance shuttle routes; the labour ministry mandates job-protected leave; the finance ministry offers tax credits to compliant firms; and the health ministry coordinates referral data so that subsidies trigger automatically when an appointment is booked.
Bring Care Closer to Home
As suggested by the Health White Paper, decentralise key chronic-disease services by co-creating district-level packages such as weekly infusion or injectable-therapy half-days, rapid point-of-care tests, tele-consult links to hospital specialists, and mobile palliative or long-term-care visits so that patients like Maria, who travels monthly for diabetes reviews spend less time on the road, and tertiary centres can focus on truly complex cases.
Why it matters. Each extra kilometre raises no-show rates and out-of-pocket costs while stretching primary-care staff. Shared design and modest, ring-fenced funding turn decentralisation into an access win rather than a cost-shift.
How it would work. A joint planning table of GP associations, community pharmacies, hospital specialists and district health offices decides what each facility can safely deliver. Participating clinics run a weekly “injectable morning” (e.g. insulin titration or biologic infusions) and dispense selected specialist medicines under a bundled-fee contract pegged to MOH unit cost and settled through fast e-claims. Quality is safeguarded through tele-mentoring that counts toward continuous professional development, continuation of rural hardship allowances, and a light quarterly audit of stock-outs and adverse events with public reporting. Savings from earlier hospital discharge will fund mobile palliative or home-care teams, backed by Compassionate Community networks.
Measure What Families Really Spend
Last but not least, we must enrich our national surveys by capturing complete illness-related costs: transport, lodging, paid caregiving and lost wages, alongside medical bills.
Why it matters. Policymakers cannot fix what they do not count. Current surveys miss expenses for non-medical costs, so budgets end up short-changing the support vulnerable families need most.
How it would work. Add a brief “health-event” module to the National Household Expenditure Survey by the Department of Statistics Malaysia (or to a dedicated National Health Expenditure Survey). After each major health visit, households record extra transport fares, overnight accommodation, paid caregiving or childcare, and days of income lost. The module takes only a few extra minutes, but the data flow straight into the Malaysia National Health Accounts and into budget models for the Social-Needs Fund, ensuring allocations rise with real-world burdens and remain electorally defensible.
Proof-of-Concepts
High-income countries already offer partial blueprints. In the United States, Medicaid’s Non-Emergency Medical Transportation benefit guarantees free rides to and from appointments. In Australia, each state’s Patient Assisted Travel Scheme reimburses rural patients for both travel and accommodation, and in Canada, provincial travel assistance programmes top up costs for patients who must commute for specialist care. These examples demonstrate that embedding transport and, where possible, other social supports within universal coverage is feasible. Importantly, none of these programmes survived by accident. They persist because legislation ring-fenced funding, clarified ministerial duties and defined metrics for renewal.
Closer to home, Malaysia’s PeKa B40 scheme provides a transport incentive of up to RM 500 in Peninsular Malaysia and up to RM 1,000 in Sabah and Sarawak to help low-income families reach treatment centres, yet its impact remains muted, hampered by low public awareness, procedural red tape, delayed reimbursements and communication gaps. PeKa B40 proves that designing a programme is only the opening move but when we follow it with practical, people-centred fixes, we unlock its full promise, turning policy into care that truly reaches every household and replacing hidden costs with peace of mind.
Conclusion
While these actions require substantial administrative effort including sustained political will, clear legislation and predictable funding that outlasts election cycles, the payoff is immense. For people like Maria, such reforms turn a daily struggle into an opportunity to focus on health rather than on how to pay for it. By confronting system pressures, hidden patient burdens and society-wide impacts in one unified strategy, we can lift the unseen price tag of ill health and make genuine access to healthcare a reality for all Malaysians.
Dr Nirmala Bhoo-Pathy is a public health medicine specialist in Universiti Malaya Medical Centre, and professor of clinical epidemiology in Faculty of Medicine, Universiti Malaya
