From Saida Abu Bakar
When Malaysians talk about universal health coverage (UHC), we picture crowded waiting rooms. We rarely picture a quiet nursery, a newborn, and a tiny heel prick that never happens. Yet for babies with serious but treatable rare diseases, UHC begins, or fails, in those first days of life.
Malaysia already screens all babies for a small number of conditions. Generations of children have been tested for G6PD deficiency and congenital hypothyroidism, programmes that have quietly prevented disability.
For most rare diseases – metabolic, immune, neuromuscular and others – we still rely on something far less reliable than science: luck. Luck that a baby falls sick in a way a doctor recognises, that the right tests are available, that parents can afford to keep coming back until someone joins the dots.
Expanded newborn screening (ENBS) is not a fashionable buzzword. It is a straightforward public health tool: use modern technology to screen newborns for a broader panel of serious, treatable conditions before symptoms appear.
Across Southeast Asia, the direction of travel is clear. Countries such as Singapore and the Philippines have steadily broadened the conditions they screen for at birth. Thailand and Indonesia are also moving ahead, strengthening their newborn screening programmes.
The region is not standing still, and Malaysia risks being left behind if we do.
ENBS matters because it changes the story at the very start of life. When the right condition is picked up early, timing can mean the difference between a child who grows, learns and plays and a child whose development is permanently derailed.
A special formula started in the first weeks of life can protect a child’s brain; the same formula started after repeated crises may come too late. An immune disorder detected on a newborn screen can be managed before infections strike; detected only after sepsis, it becomes a race against time.
ENBS also speaks directly to fairness. Without a public programme, early diagnosis becomes a postcode lottery. Babies born to families who can pay privately, or near well-resourced hospitals, are more likely to be tested. Babies born in rural areas, in East Malaysia or to families who rely entirely on the public system are more likely to arrive late – in crisis, or not at all.
It is also about the health system itself. A well-designed programme generates real data on how often certain rare diseases occur in Malaysia, links babies into follow-up care and registries, and forces clearer pathways between health clinics, hospitals and centres of expertise. It gives planners something firmer than guesswork.
The obvious objection is familiar: there is no budget. But “no budget” does not mean we are currently spending nothing. It means we are spending late and expensively on repeated admissions, intensive care, long-term disability support and lost potential.
A child who enters through the intensive care unit, after irreversible damage, will almost certainly need far more for life – medically, educationally and socially. ENBS is not about creating a new bill; it is about moving some of the bills earlier to a point where they can do the most good.
Advocates are already making the case for expanded newborn screening. We also know it cannot be done by flicking a switch. What is missing is not ideas or technical know-how, but a clear political decision and the will to follow through.
A sensible way forward would be to agree on a small, high-impact panel and commit to introducing it in a group of hospitals as a first step, with transparent budgets and timelines.
Over three to five years, the country could study the results and, if the benefits are clear, extend the programme step by step. Without that political will, proposals stay on paper and babies continue to be missed.
Placing rare diseases within public health is essential if any of this is to happen. Rare conditions are often seen as the domain of sub-specialist paediatricians in tertiary hospitals, yet they touch almost every classic function of public health: planning, prevention, data and financing.
Public health planners decide what sits inside national health plans and UHC packages. If rare diseases and ENBS remain outside those documents, they will always be fighting for leftover funding.
Public health teams design prevention and early detection strategies such as newborn screening, antenatal counselling and simple “red flag” tools for primary care. Public health units manage data and surveillance; without reliable data on rare diseases, planning becomes guesswork. Health financing experts decide how far families are shielded from the cost of dressings, off-label medicines, travel and equipment.
If public health continues to treat rare diseases as somebody else’s problem, UHC will always have a blind spot.
If it chooses to bring them into the frame, ENBS becomes a natural part of the toolkit, alongside vaccination, maternal health, and screening for common conditions.
These reflections are written on behalf of the Rare Diseases Coalition Malaysia (RDCM), a network of patient organisations and caregivers who see these gaps every day.
We are not asking for an unlimited cheque or an instant, perfect system. We are asking for a beginning: recognition that ENBS is a public health and UHC priority, a realistic and phased roadmap, and a place at the table for patient organisations and caregivers as these plans are drawn.
UHC is often discussed in big terms – financing reforms, strategic purchasing, system transformation. On the ground, it can be as small and concrete as this: a baby is born in Malaysia; a few drops of blood are placed on a card; a laboratory quietly runs a test; the result comes back in time to change the story.
That is what it would mean for universal health coverage to start at birth.
Saida Abu Bakar is the president of DEBRA Malaysia and interim lead of the Rare Diseases Coalition Malaysia.
The views expressed are those of the writer and do not necessarily reflect those of FMT.