Rising leprosy cases in Malaysia show the stigma is far from over

If you grew up thinking leprosy was something biblical, you’re not alone. The disease, also known as Hansen’s disease, feels like it belongs to another time—one of sandals and scrolls, not scooters and smartphones. But in 2023, Malaysia saw a 40% spike in leprosy cases. And in 2024, reports have surfaced in Negeri Sembilan and Kelantan, including one death.

It’s not just a data point. It’s a warning shot: the disease never disappeared. We just stopped talking about it.

Leprosy is caused by Mycobacterium leprae, a slow-moving bacterium that damages the skin, nerves, and eyes. Left untreated, it can lead to disfigurement, blindness, and permanent disability. Treated early, it’s curable. So why do cases still slip through the cracks? Because stigma still moves faster than science.

Reddish or pale skin patches. Numbness in the hands or feet. A mysterious weakness that creeps in quietly. These are some of leprosy’s earliest signs. But in many communities, they’re not seen as medical issues—they’re whispered about as something shameful. Something spiritual. Something that makes people disappear. Which is exactly the problem.

Delayed diagnosis doesn’t just lead to worse outcomes—it spreads the disease further. By the time someone seeks help, they may have infected others. Yet they often wait, because they’re afraid. Not of the illness itself, but of how people will treat them. It’s this fear that still keeps leprosy alive.

To understand why the disease is resurging in pockets of Malaysia, we have to get honest about the beliefs that shape behavior. These myths aren’t just outdated—they’re dangerous.

Myth #1: Leprosy is highly contagious.
Reality: It’s not. It takes prolonged close contact, typically through droplets from coughing or sneezing. And once someone starts treatment, they’re not contagious anymore.

Myth #2: It’s a curse or punishment.
Reality: It’s bacteria—not karma. But centuries of cultural memory (and some religious texts) have fossilized this belief. The result? People hide, rather than heal.

Myth #3: Body parts fall off.
Reality: They don’t. What happens is nerve damage. That damage reduces sensation. Injuries go unnoticed. Infections fester. And yes, serious complications can follow. But it’s not the horror story people imagine.

Myth #4: There’s no cure.
Reality: There is. It’s called multi-drug therapy (MDT), typically lasting six to twelve months. And it’s free in most countries where leprosy still exists—including Malaysia.

Myth #5: People with leprosy should be isolated.
Reality: They need care, not cages. With early treatment, patients pose no risk to others and can lead normal lives.

Statistically, Malaysia has achieved “elimination” of leprosy at the national level—meaning fewer than 1 case per 10,000 people. But “elimination” doesn’t mean extinction. It just means the disease is hiding in harder-to-reach places: remote towns, underserved communities, migrant clusters, or informal settlements. The 40% rise in 2023 isn’t a national collapse. It’s a crack in the wall—showing us where stigma and surveillance systems are both falling short.

When cases cluster in rural areas or border regions, the issue isn’t just medical infrastructure. It’s social perception. People don’t report symptoms when they expect rejection instead of care. And public health suffers for it.

The Malaysian Ministry of Health knows that a medical response alone isn’t enough. That’s why they launched the LaKAR program—short for “latihan, kesan, analisa, rawat, rujuk”—which trains healthcare workers to spot signs early and reduce diagnostic delay.

They’ve also begun using single-dose rifampicin as post-exposure prophylaxis (PEP) for people who’ve been in close contact with someone infected. It’s a strategy backed by the World Health Organization and shows particular promise in tight-knit or high-density communities. Still, the science is only as strong as the story people believe. And that’s where the real work begins.

Here’s the thing about diseases with long histories: they accumulate meanings that medicine can’t erase overnight. Leprosy became a metaphor long before it became a clinical diagnosis. A stand-in for impurity. A symbol of exile. A warning about sin.

That symbolic weight hasn’t lifted in many parts of the world. In Malaysia, it still shows up in hushed tones, schoolyard teasing, and job discrimination. People with leprosy may be physically cured—but socially, they’re still boxed out. Health experts call this “social leprosy”: the second disease, the one that never gets treated. And it’s arguably more damaging.

One of the reasons leprosy persists—quietly, dangerously—is because it’s not part of the public conversation. It doesn’t trend. It doesn’t feature in TV dramas or Instagram carousels. Even during awareness campaigns, it’s usually lumped in with broader “neglected tropical diseases” (NTDs), a category that all but guarantees neglect.

But neglect is the perfect climate for resurgence. When no one’s looking, diseases regroup. So if the stigma is cultural, the solution has to be cultural too. That means more than pamphlets. It means stories. It means visibility. It means putting real, recovered patients at the forefront—because their presence changes minds faster than any stat sheet.

There’s reason to be optimistic. Malaysia’s health system is strong, and its surveillance protocols are improving. MDT is widely available and effective. The government has committed to global elimination goals and aligned with WHO recommendations. That’s the scaffolding. But elimination isn’t just a technical benchmark—it’s a cultural one. It means no one’s afraid to come forward. No one’s ashamed to get help. And no one’s punished for being sick.

That’s the real endgame.

Malaysia’s LaKAR initiative is a promising start, especially in its community-based approach to early detection and training. Equally important is the rollout of post-exposure prophylaxis, which protects close contacts before symptoms ever appear. These are textbook best practices—but they work only when people trust the system.

That trust is still fragile. In rural areas, some still prefer traditional healers or avoid clinics altogether for fear of being seen. Others, especially migrant workers and the elderly, may not understand that leprosy is curable—or that treatment is free. This is where grassroots partnerships matter. When NGOs, schools, mosques, and local leaders echo the same message—leprosy is not a curse—it begins to change what people believe is possible.

The path forward requires medical vigilance, yes. But also public empathy, sustained outreach, and the courage to keep saying the word. Leprosy in 2025 isn’t a medical mystery. We know how to treat it. We know how to contain it. The only thing we haven’t quite cracked is the shame. And as long as shame drives silence, cases will continue to surface too late.

So the next time you hear someone make a joke about “lepers” or recoil at the word, remember: that discomfort is part of the problem. Not the cure. Because eliminating leprosy isn’t about erasing the disease. It’s about refusing to erase the people who’ve had it.

The truth is, the hardest part of erasing stigma isn’t changing facts—it’s changing how those facts feel. You can hand someone a brochure, a diagnosis, even a cure. But if they still feel untouchable, unseen, or less-than, you haven’t really healed anything. That’s why language matters. So does body language. So do the small gestures that say: you’re welcome here, you’re safe here, you’re not alone.

Ending leprosy isn’t just about medicine. It’s about memory. It’s about breaking the loop that tells people to hide instead of speak up, to endure instead of reach out. We can end the disease. But we’ll need to end the silence too.