Leprosy Mailing List – September 23, 2026
Ref.: (LML) Last mile outcomes in Leprosy care, pushing the value chain to the edge. Part 1.
From: Arie de Kruijff, Kijabe, Kenya
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Last mile outcomes in Leprosy care, pushing the value chain to the edge.
A cure has been free for three decades — yet roughly 200,000 new cases are still diagnosed every year, many only after permanent nerve damage has set in. The obstruction is no longer medical. It is the way leprosy services are organised, funded and verified, a model largely unchanged since the 1980s.
In 1991 the World Health Assembly resolved to eliminate leprosy as a public health problem by the turn of the century, and by that measure the target was reached. Multi-drug therapy — recommended by the WHO in 1982, funded by the Nippon Foundation and donated by Novartis since 2000 — had turned an ancient, disabling infection into one cured by six to twelve months of pills, and the disease duly drifted from the global agenda.
The disease quietly declined to co-operate with the ending. More than 120 countries still report cases, and roughly 200,000 new infections are diagnosed worldwide each year. A stubborn proportion of those diagnoses arrive late — after nerve damage has already occurred, leaving the visible, permanent impairment that specialists read as a measure of how long the disease travelled undetected. The presence of children among the newly diagnosed confirms that transmission is still happening in the present, not merely resurfacing from the past.
None of this points to a failure of medicine. It points to a failure of architecture: the leprosy programmes responsible for finding, treating and following these patients are still organised around a design conceived in the early 1980s for a very different disease burden — and the burden has moved to precisely the places that the design can no longer reach.
A structure built for a different war
The classical leprosy programme was, for its task, an effective machine. A national office fed a chain of provincial and district supervisors, who in turn reached peripheral clinics and community workers. That vertical chain held the drug supply, kept the registers, ran the trainings and mounted the case-finding campaigns. Its purpose was singular: find cases and push a twelve-month course of pills through a pipeline to them. At that it succeeded, and prevalence fell by orders of magnitude.
Then the ground shifted. Leprosy services were folded into general primary healthcare — a sensible move for sustainability and for reducing stigma, but one that dispersed the disease among clinicians who might now see a handful of cases across an entire career. Skills that are rarely exercised fade; supervisors once dedicated to leprosy were given tuberculosis, better- funded and more politically visible, as their first priority. After the elimination declaration, dedicated budgets and political attention largely followed the headline. What remained was a patchwork: NGOs financing a training here and a campaign there, usually from non-designated funds, because institutional funding channels were never built to pay for granular, last-mile work.
The quiet consequence was that the parts of leprosy care beyond the initial cure were left behind. Multi-drug therapy clears the infection; it does not prevent or resolve the reactions, the nerve damage, the ulcers, the disability and the social exclusion that follow. Those require sustained, often specialised attention — and they were never the core business of the vertical pipeline, nor of a general primary care system that had never been equipped for them.
The uncomfortable summary is not that the programme failed. It is that the organisation chart outlived the resourcing that once animated it. The structure still describes how information is supposed to flow, more than how care is actually delivered.
How technology changes a business model — a lesson from the taxi rank
The relevant question now is not clinical. It is commercial in the broadest sense: how does technology change the way a service is organised and paid for?
The clearest recent example has nothing to do with medicine, and is useful precisely for that reason. For most of a century the taxi industry ran on a single design: a company owned the vehicles, employed the drivers, operated a central dispatch desk and collected the fare. Value was created at the kerbside, but it was priced, captured and distributed at the centre.
The arrival of three everyday technologies — smartphones with mobile coverage, satellite positioning, and digital payments that settle small transactions instantly — made a different model possible. Ride-hailing platforms own no vehicles and employ no drivers. Individual car owners supply and maintain the asset and choose when to work. The platform centralises only what genuinely benefits from centralisation: matching, pricing, payment rails and the two-way ratings that make quality visible. The value itself is produced, recognised and substantially retained at the edge.
Four principles carried the shift, and they are the transferable payload of the story. Centralise the infrastructure, decentralise the delivery. Give the person producing the value agency — and a direct reward attached to it. Make quality visible and verifiable cheaply, through the digital trace of every transaction rather than a fleet of inspectors. And expect adjacent services to grow on the same rails, as food delivery and parcel logistics did.
The analogy must however be handled with care. A public health service is not a market with willing buyers; a leprosy patient does not choose between providers on price, and the services that matter most — contact tracing, stigma reduction, disability prevention — produce benefits for third parties, not a paying customer at the point of use. The state has obligations a platform does not: notification, drug quality, safety and equity of access cannot be delegated. Outcomes are slow and only partly attributable to any single actor; a prevented disability is not a completed trip. And nothing here is a transaction between consenting equals, because the disease itself carries stigma and power imbalance.
What survives those caveats is narrower and more durable: a structural question. If the coordination layer were held centrally while the value were produced, recognised and partly retained at the periphery, what would leprosy service delivery look like?
Where the value is actually created
The answer begins with geography. In leprosy care, value is created in the space between the health post and the household: the nurse who notices a suspicious patch, the community volunteer who knows which family to visit, the traditional healer patients consult before anyone else. This is the last mile — and it is simultaneously where the outcomes are produced, where the information is generated, and where the least value, agency and recognition currently flow.
Those facts pointing at the same place explain, more than any funding shortfall, why the disease persists.
The work this last mile must deliver is wider than the old pipeline allowed for. It includes timely diagnosis — before nerve damage becomes permanent — and uninterrupted treatment. It includes recognising and managing leprosy reactions, which remain substantially under- diagnosed and poorly treated at the periphery. It includes disability care: ulcers, nerve function, footwear, self-care. It includes contact examination and preventive treatment for household contacts, which is logistics before it is medicine — listing contacts, reaching them, screening them, recording what happened. And it includes attention to stigma and social participation, which are outcomes in their own right.
The last mile is not empty. It is staffed by people with more capability than the system credits them with: clinic nurses with medical training and community trust, volunteers with local knowledge no campaign can purchase. The realistic opportunity is not to recruit a new workforce. It is to give the existing one the leprosy knowledge it lacks, the tools it needs, and a reason to stay engaged.
What each actor should receive
If the last mile is where outcomes are made, then value has to land there — or the model will quietly depend on goodwill until the goodwill runs out, which is substantially what has happened to the existing structure. A digital system that adds reporting burden to an overworked nurse in exchange for better national dashboards is not a sustainable model; it is a subsidy extracted from the periphery.
The design question is therefore concrete: what does each actor receive?
The peripheral nurse or clinic focal point gets a shorter path from a suspected case to a correct decision, decision support when the presentation is atypical, and less duplicated paperwork rather than more. She gets evidence of the quality of her own work, which today is almost invisible beyond her facility. She gets knowledge and support for the parts of leprosy she finds hardest — reactions and disability care.
Community actors get a defined, recognised role and a channel to escalate a concern rather than managing it alone. District and provincial supervisors get a map-based picture they can act on, and the ability to direct scarce supervision toward the places that need it. National programmes get case-based data that meets their reporting obligations, and stock visibility so drug allocation is planned rather than guessed. Implementing organisations and funders get the thing they most lack: a credible, verifiable account of results, which is the precondition for access to institutional, longer-term funding rather than project-cycle grants.
And patients get care that continues after the pills are finished, and less time spent travelling to reach what little care exists. It is a telling omission in most such inventories that value for patients is the least well understood — what would make the system meaningfully better from the patient’s side is a question that, by most accounts, has never been properly asked of those affected.
— End of part one. The conclusion follows next week. —
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LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << edit...@gmail.com
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