Budget 2026 funds the pipes. Here’s how to turn them into access for Malaysia’s rare disease families without creating new programmes.
For families living with rare or low-awareness conditions, inclusion isn’t about creating new programmes — it’s about making sure the system itself finally lets them through. Budget 2026 funds the pipes — the spaces, tools, people, and connectivity — that make that possible.
Malaysia’s Budget 2026 lifts the Ministry of Health (MOH) allocation to about RM46.5 billion. Headlines mostly focus on ward upgrades, equipment and decongestion.
All of that matters, yet the bigger idea is simple: build the system well and families living with these conditions, including small-number conditions, finally get through.
Weeks earlier, Malaysia pre-launched the National Policy for Rare Diseases (NPRD). It sets a clear direction: earlier detection, timely confirmation of diagnoses, integrated counselling, a national registry, stronger laboratories, and public education. Because this was a pre-launch, it invites co-design with clinicians, universities, communities and patient groups while operating guidance is finalised.
That timing matters. As ministries translate policy into implementation plans, every upgrade and procurement decision made now – from equipment to connectivity – will decide whether the NPRD stays on paper or lives in practice.
Budget 2026 provides the tools to match that direction: core maintenance, targeted upgrades, refreshed equipment, a limited outsourcing window to ease bottlenecks, specialist services in selected clinics, and stronger connectivity for hospitals and community facilities via the Malaysian Communications and Multimedia Commission (MCMC).
Taken together, that’s the foundation a fair system needs — reliable spaces, modern diagnostics, reachable expertise, and the digital rails that connect them. And when these connect, families no longer need to navigate the system alone.
From the eyes of Malaysian families — and with civil society in support — practical, non-prescriptive options could include:
Facilities and Flow: RM1.2 billion (maintenance) + RM100 million (district ward upgrades): Keep power, ventilation, cold chain and patient flow reliable so samples move on time, every time, and clinics can host regular sessions closer to families.
Equipment: RM 755 million (medical equipment refresh): Update key tools to shorten time-to-diagnosis, including genomic sequencing capacity (targeted panels, WES (whole-exome sequencing), WGS (whole-genome sequencing) where clinically justified), secure bioinformatics/interpretation, variant curation and database infrastructure, and training for lab scientists and genetic counsellors.
Clinical Capacity in the Community: RM30 million (specialist services in selected clinics): Run regular specialist sessions (paediatrics, neurology, rehabilitation/dietetics, counselling) with tele-support from tertiary centres; gently seed MDT (multidisciplinary team) – style care.
Decongestion Bridge: RM140 million (outsourcing to military, university, and private hospitals): Use sparingly to clear defined testing queues while public capacity strengthens, with anonymised results flowing back to the public registry.
Connectivity and Awareness: RM650 million (via MCMC): Switch on tele-consults, tele-genetics, e-referrals and secure e-lab orders/results with registry auto-updates; also support evidence-based public awareness for low-awareness diseases and simple referral prompts.
Equity Matters: Access should feel fair across Malaysia — including Sabah, Sarawak, and rural and semi-rural districts — so upgrades, clinic sessions and connectivity roll-outs do not cluster only in big cities. Phasing early sites across regions signals that small-number families are included by design, wherever they live.
Diagnostics: Test now, treat faster, and let the system learn.
Rule of Care: When a newborn screens positive or a clinician has reasonable suspicion, genetic testing proceeds immediately, income-blind and region-blind.
Where ENBS Fits: Expanded Newborn Bloodspot Screening (ENBS) should serve as the front door of diagnostics, not a standalone programme. Positive screens move directly to confirmatory genetic testing (targeted variants, WES/WGS where justified), with plain-language consent, no paywall, and clear follow-up. Panel design and interpretation should evolve through de-identified population variant mapping from real clinical results.
Molecular confirmation ends the diagnostic odyssey, guides targeted care, prevents wasted investigations, and ensures equity — a baby in Sabah deserves the same diagnostic chance as one in Selangor.
Each confirmed result also strengthens Malaysia’s national variant database (de-identified) and rare disease registry, sharpening ENBS panels and informing national service planning.
Turnaround time matters: Malaysia cannot afford to wait months for clinically indicated genetic results, especially when the testing is performed locally.
Budget 2026 should anchor a clear national service standard — ideally within 14 days for newborn confirmatory testing and within seven days for critical neonatal cases — supported by what the budget already funds: equipment (sequencers, sample-prep, bioinformatics) under the RM755 million refresh; outsourcing flexibility (RM140 million) for short-term overflow with anonymised results returning to MOH systems; daily sample logistics, and validated dried blood spot transport to include Sabah and Sarawak; and digital rails (RM650 million) for e-orders, tele-genetics, and automatic registry updates.
With faster sequencing, smart triage, and simple monthly summaries, results can arrive in days, not months, and families will see allocation becoming access.
Budget 2025 marked a milestone with RM25 million for rare disease treatment and the creation of a Rare Disease Trust Fund. Budget 2026 doesn’t repeat that figure separately, but the principle remains: implementation speed and system reliability are what matters most now.
The functional lines in this year’s budget — maintenance, equipment, outsourcing, connectivity, specialist services — are the fastest route to shorten the journey to diagnosis so treatment support reaches the right patients sooner.
Any registry and awareness efforts should use plain-language consent, strong privacy safeguards, and non-stigmatising messages. Families need clarity on what data is collected, why it helps, and how it’s protected.
Community groups can co-create family-friendly materials, provide volunteer navigators at clinics, and run feedback loops so messages and referral prompts are accurate and kind, in partnership with MOH and clinicians.
What families should feel when Budget 2026 reaches them:
- Faster answers after a positive screen — days, not months, with next steps clearly explained.
- No paywall for confirmatory genetic tests when a clinician suspects a rare condition.
- Fewer trips and repeats — one e-referral that “sticks,” with results flowing to the right team.
- Specialist touchpoints closer to home — regular sessions at selected clinics, backed by tele-support.
- Respectful consent and privacy — plain-language forms, results used for care unless families opt in to anything more.
- Updates that don’t go silent — families get a call or message when samples move and results are ready.
- We will listen for these signals, share feedback kindly, and celebrate what works so it spreads.
The point isn’t to earmark funds disease by disease. It’s to use system investments — facilities, equipment, specialist sessions, targeted outsourcing and connectivity — in ways that naturally include small-number families.
This approach is fiscally sensible, clinically sound, and faithful to the NPRD’s people-centred pathway: early detection, confirmation, counselling, registry and public education working together.
Bottom line: the NPRD sets the compass. Budget 2026 lays the rails.
If implementation leans into diagnosis, counselling, clinic-based touchpoints and public awareness — without heavy new programmes — these families fit everywhere the system invests in itself.
This is how Budget 2026 makes these families fit — everywhere the system chooses to care.
Saida Abu Bakar is president of the Dystrophic Epidermolysis Bullosa Research Association Malaysia (DEBRA Malaysia), a patient support group of individuals and families affected by the rare skin disease Epidermolysis Bullosa (EB) and interim committee member of the Rare Diseases Coalition Malaysia (RDCM).
- This is the personal opinion of the writer or publication and does not necessarily represent the views of CodeBlue.
