Leprosy Mailing List – October 20, 2026
Ref.: (LML) Last mile outcomes in Leprosy care, pushing the value chain to the edge
From: Abby Tablizo, Cainta, the Philippines
Dear Pieter and colleagues,
This manuscript (Arie de Kruijff, LML, September 23 and 28, 2026) articulated something that those of us in the leprosy community have felt for years: our bottleneck isn’t the medicine anymore. The real challenge is in the machinery—how we organize, fund, verify, and deliver care at the periphery. I have been around the Philippines accepting regional invitations to train our HCWs (Health Care Workers) about Leprosy. Part of my goals is to capture the hearts of these trainees so they will include Leprosy in their works. As we know, the current situation in the Philippines is still heartbreaking: stigma is still high affecting early diagnosis and correct contact tracing and compliance to treatment; there are still quite a number of deformities present during diagnosis indicating late diagnosis; difficult case finding since it is not a priority by the government; incorrect reporting because our reporting system doesn’t allow hospital institutions’ data to be included; over-dependence of DOH (Department of Health) to private partnerships because of insufficient leadership and accountability; lack of MDT supplies. Luckily, there are genuine advocates, you included, that continue to ignite the hearts of many, creating hope for our country.
This manuscript offered an honest, refreshing blueprint. I’d like to share what these ideas look like when they hit the real world in the Philippines—complete with our messy institutional gaps, our persistent heartbreaks, and the sheer human compassion that holds this whole thing together.
On paper and in national reports, things often look tidy. But once you leave the capital, the picture shifts dramatically. If we’re going to talk about structural design, we have to talk about what our frontline workers are actually up against every single day:
1. Stigma is alive and well—and it quietly sabotages everything.
We often talk about stigma as an abstract sociological concept, but here it’s an active clinical barrier. In so many provinces, people still view leprosy as a generational curse or a shameful punishment. That fear drives people into deep hiding. Patients conceal their anesthetic patches with long sleeves, thick clothing, or makeup for months—sometimes years—because they know that a diagnosis could mean getting abandoned by their spouse, thrown out of their community, or fired from work on the spot.
And when we finally do catch a case, try asking that patient to list their close household contacts. They panic. They’re terrified that a health worker showing up at their home will brand their entire family with the label ketongin. So they give us truncated names, fake addresses, or possibly say they live alone. That immediately derails contact tracing. Even compliance suffers; people skip their monthly clinic visits just to avoid being seen near the RHU medicine counter. Hence they come to Manila, to the PDS institutions, far from their barangays, so they won’t be labelled by their neighbors and even relatives.
2. Deformities at diagnosis are a tragic indictment of our delays.
It pointed out that late diagnoses and permanent impairment are clear proof that the disease traveled undetected for years. We see this constantly. It’s heartbreaking how many newly diagnosed patients walk in already presenting with Grade 2 Disability (G2D)—claw hands, wrist drop, lagophthalmos, or trophic ulcers on anesthetic soles. That isn’t just a medical note; it means our system missed that patient for three, five, maybe even seven years while their nerves were being quietly destroyed. And when we see children with active patches, it tells us plain as day that transmission isn't something from the past—it is happening in homes right now.
3. Case finding is exhausting, and it has fallen completely off the priority list.
Ever since the Philippines hit the WHO statistical threshold of "elimination as a public health problem" back in 1998 (<1 case per 10,000 population), national and local leaders essentially declared victory and moved on. Active case finding takes immense effort—hiking into upland sitios, crossing rivers, and going door-to-door. With zero operational budgets for fuel or boat rentals, municipal teams end up falling back on passive case finding: just waiting for someone to walk into the clinic. And by the time a patient actually walks in on their own, the nerve damage is almost always irreversible. Speaking of active case finding, reality in Manila is that the PDS institutions are unable to report efficiently due to the patient confidentiality we have. It is now NOT a notifiable disease. We rely on our patients to take their family members to us for checking.
4. The numbers on our dashboards don't reflect the truth on the ground.
Highlighted, our primary records are still mostly paper cards sitting in RHU card boxes. When numbers do get compiled and sent upward, they are often late, aggregate, or unintentionally sanitized. Many rural facilities simply lack the diagnostic confidence to call a suspicious lesion leprosy, so they label it eczema or fungal infection and send the patient home. Other times, local leaders don't want the political headache of being labelled a disease "hotspot." The result? We are flying blind, relying on sanitized spreadsheets that erase our hyper-endemic pockets. Reports of PDS institutions do not get reported by our FSHIS, the official reporting system of the Philippines. We are seeing 800+ patients in total per year.
5. The chronic MDT stockouts: a heartbreaking failure of the compact.
We’ve seen supply stockouts drag on for months due to central procurement bottlenecks, FDA clearance delays, and broken distribution links between regional depots and island clinics. A lot of the PDS institutions don’t have Pediatric MB MDT blister packs and Clofazimine for Lepra Reactions. It drives patients straight to default, continues transmission, increases the risk of drug resistance, and leaves them wide open to acute lepra reactions without anti-inflammatory coverage like clofazimine or oral steroids. Single-Dose Rifampicin Post-Exposure Prophylaxis (SDR-PEP) remains to still be for FDA approval for more than 2 years now.
6. Over-dependence on private partners and a vacuum of state leadership.
We are endlessly grateful to organizations like the WHO, Sasakawa Health Foundation, Nippon Foundation, Novartis, Culion Foundation, PLM and Philippine Dermatological Society. Their support has kept leprosy care alive in the Philippines for generations. But over time, our health department developed an unhealthy over-reliance on external goodwill. When the state steps back and lets external grants carry the weight of a neglected disease, it abdicates its own sovereign accountability. Project-based initiatives come and go, but the disease stays behind.
This is why this paper is so vital. They've forced us to look at the structural architecture rather than just hoping that things somehow work out. A few thoughts on your core ideas from our frontline perspective:
The "Taxi Platform" concept has real merit, but medicine isn't a ride share.
Your ride-hailing analogy is a brilliant way to rethink logistics. If we had an automated platform tracking blister packs at the edge, central inventory would always know before an RHU runs out of medicine. We could prompt contact visits and route supervisory visits efficiently. But we have to be so careful not to treat leprosy care like a consumer transaction. Because of stigma, you can’t just dispatch a random health worker to someone’s home via an app. If privacy is breached, that patient will disappear into the hills. And biologically, leprosy doesn't end when the pills run out. A patient who is "cured" of the bacteria can suddenly develop a severe, blinding Type 1 or Type 2 reaction (ENL) months later. An edge model has to account for that continuous clinical safety net.
Paying for verified outcomes instead of routine activity is long overdue.
This is spot-on about how we pay for activity and simply cross our fingers for outcomes. We’ve lost count of how many training sessions have been funded where fifty health workers sit in a provincial hotel, listen to slides, receive a certificate, and then go home. Nothing changes. Tying funding to tangible endpoints—like verified household contacts receiving SDR-PEP, zero Grade 2 disabilities at diagnosis, and completed treatment courses—would completely change the incentives.
Keep the tech practical and offline-first.
Im glad to read its call for unglamorous tech. Out in the islands, we don’t need high-tech AI experimental pilots. We just need simple, solid tools: an offline phone app that lets a rural nurse take a photo of a paper clinic card, digitizes it, flags missing contact follow-ups, tags the rough geographic cluster, and syncs up whenever they get a bar of signal. That alone would be a game-changer. Correct and sustainable implementation is the key for its success.
I want to emphasize something that no balance sheet or platform architecture can capture: compassion is the true glue holding this system together. “Puso”, heart to serve and continue pushing forward even if it is not written in the contract. Higher purpose.
For decades, our neglected disease programs have survived on the backs of these frontline workers and their pure empathy.The danger of any technocratic reform is that it risks turning these frontline heroes into data entry clerks, or treating patients as audit milestones. Technology should never be used as a stick to extract more paperwork. It should be a shield that protects them: one that guarantees the medicines arrive on time, takes the reporting burden off their shoulders, and connects them directly with specialist dermatologists who can back them up when they’re unsure.
If we want to create a lasting impact in the Philippines, we have to build this together. No single group can carry this alone. But respect and genuine appreciation must always be present:
· The Department of Health and LGUs
need to step up and lead from the front. Leadership must be efficient coming from the central office spreading to the regions and private institutions. Dedicated budget line items for active case finding, ensuring unbroken supplies of MDT and reaction medicines (like clofazimine and oral steroids), and holding local health leaders accountable for zero stockouts and honest reporting. Maximizing currently low resources wisely which is not only good on paper but efficient and realistic in the fields.
· World Health Organization- Philippines
who has been always supportive with Leprosy elimination in the Philippines.
· The Philippine Dermatological Society
is ready to serve as the clinical backbone. We are working hard to build sustainable teledermatology corridors so that an MHO in an isolated island clinic can snap a photo of a suspicious lesion and get guidance from a board-certified dermatologist within a day or two. We continuously train for better diagnostic capabilities. We provide complete service to our patients. We intentionally and proactively help the government how-ever we can even up to programmatic level.
· Civil society and patient groups
—like the Culion Foundation, Sasakawa Health Foundation, and organizations of Persons Affected by Leprosy (PAL)—
must be equal partners. They bring the moral authority to fight stigma in our communities, support programs, and provide avenues to help patients rebuild their lives.
It would be nice to have this sincere communication with Dr Arie. We have the high-burden clusters, we have committed municipal doctors, we have selfless frontline health workers, and we have a dermatological society (PDS) determined to see this through.
Let’s join hands. If we can pair structural innovation with genuine clinical compassion, we won’t just be celebrating statistical elimination on a national dashboard. We will finally deliver on the promise of true zero transmission, zero preventable deformities, and the restored dignity that every person affected by leprosy deserves.
Warm regards,
Abby Tablizo, MD
Chair, PDS Leprosy Interest Group
ABELAINE VENIDA TABLIZO, MD, FPDS
Chair, Leprosy Interest Group, Philippine Dermatological Society
Head, Leprosy and Infectious Unit, Rizal Medical Center
Dermatologist, Discovery Clinic, The Garden Walk, Cainta
____________________________________________________________________________
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << edit...@gmail.com
You received this message because you are subscribed to the Google Groups "Leprosy Mailing List" group.
To unsubscribe from this group and stop receiving emails from it, send an email to leprosymailinglist+unsubscribe@googlegroups.com.
To view this discussion visit https://groups.google.com/d/msgid/leprosymailinglist/5b7234a5-279a-46ab-af04-ca19013a19c3n%40googlegroups.com.
No comments:
Post a Comment