Pushing the Value Chain to the Edge
Dr Arie de Kruijff explores some of the big issues in the fight against leprosy: “The obstruction is no longer medical.”
Dr de Kruijff has served for twenty years with the Leprosy Mission, firstly as country leader in Mozambique, then, until August 2026, as Innovation & Improvement Lead in the international office. He is looking for ways to put his experience to work in leprosy care, systems, and information systems. By night: He is a dorm dad with his wife Marie to 17 ninth- and tenth-grade girls in Kenya. He is Dad to three — two out of the house and one in tenth grade at home. Below he explores some of the big issues in the fight against leprosy.
A free cure for leprosy has been available 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.
Paying for Activity, Hoping for Outcomes
The money sits underneath all of this, and it is where the model is most visibly misaligned. Leprosy control is almost everywhere funded as activity: a training delivered, a campaign mounted, a supervision visit completed. Government budgets cover the staff establishment and little else. The operational money that does flow comes largely from NGOs, often from non-designated funds rather than institutional line items, and it is billed against outputs — people trained, people screened — while the outcome everyone actually wants — a case found before disability, a contact examined, a treatment course completed — goes unmeasured and unpaid.
Several structural consequences follow. Output is paid for while outcome is merely hoped for. Short funding cycles produce short horizons, in a disease that demands multi-year follow-up and surveillance measured in decades. Activity funds, when they stop, leave no budget line and no institutional memory behind them. And the sector is caught in a loop of its own making: outcomes are not funded because they are not verifiable, and they are not verifiable because the information system is paper-based and geographically dispersed.
That information system is the clearest illustration of the whole problem. Leprosy is notifiable, yet in many countries the primary record remains a paper clinic card held at a facility, with only aggregate numbers travelling upward. Four consequences follow. Verification is expensive, because confirming a register entry means a physical visit — a 400-kilometre drive to flip through a card box — and therefore happens rarely. The data is not case-based at higher levels, so no one can follow an individual through treatment. It is hard to map, which makes hotspot identification guesswork. And confidence in the numbers is limited, including among the health officials who must use them. The more instructive reading is that the information system is not merely a reporting problem. It is the mechanism by which leprosy service quality is made visible — or not — to the people who allocate money. That is a business-model question as much as a technical one.
What the New Technology Could Change
This is where artificial intelligence becomes relevant, though the field is over-supplied with speculative language and under-supplied with field evidence. The genuinely practical capabilities are unglamorous: reading a paper form accurately from a phone photograph, extracting and geocoding a location, checking a record for internal inconsistency, and co-ordinating a small set of follow-up actions between named people.
Applied to leprosy, the concrete possibilities are these. Case-based notification can become a by-product of the clinical encounter rather than a separate administrative task performed months later: a health worker photographs the card, the software extracts the data, the worker verifies and corrects it, the address is pinned to a map and the record is confirmed into the national structure. If notifications carry location, hotspot identification becomes a standing capability rather than a special study. The system can flag what a busy clinic cannot — a missing disability grade, an ulcer with no follow-up, a reaction recorded without a treatment plan, gaps in a monthly treatment record. And if the trail of service delivery is captured digitally, verification stops being an expedition and becomes a trace of the work itself.
The concerns here are very real: Connectivity remains a real constraint in the places leprosy concentrates, and offline-capable workflows is a requirement, not a feature. The accuracy of card-reading software is not yet proven across countries’ differing forms, and should be measured before any operational claim is made. Leprosy is a stigmatised disease, so data protection is not a compliance detail but a condition of doing the work at all. Digital verification has to earn the trust it claims; a visible digital layer over a weak data foundation can manufacture false confidence rather than real assurance. And none of this removes the need for human judgement — the realistic design keeps a clinician at the helm, with software supplying the memory and the co-ordination.
The honest characterisation is that technology plays the platform role, not the doctor role. It can make peripheral work visible and therefore financeable. It cannot perform the work, and it should not be asked to pretend otherwise.
The Lessons are Already on the Record
None of this “pay for verified results at the edge” thinking is new in public services. Results-based financing has a two-decade history, and its examples are worth recalling mainly to establish that the idea is not exotic. Argentina’s Plan Nacer programme, launched in 2004, tied part of its funding for maternal and child health to a set of verified clinical indicators, with payments flowing onward to the facilities that produced the results. Performance-based financing has run in health systems across dozens of countries. A development impact bond for maternal and newborn care in India tested the structure that lets private investors pre-finance delivery and be repaid only on verified outcomes. And outcome-linked funding of community health worker networks has proved, at least in principle, that a peripheral network can be the contracted party.
The accumulated lessons from that literature are hard-won and bear repeating, because each one maps onto leprosy with unusual precision. Government ownership decides whether a scheme survives; those embedded in national financial management persist, while those living in donor project units collapse when the project ends. Metrics distort behaviour — pay narrowly and providers tunnel-vision onto the paid indicator and cherry-pick the easy cases. Outcomes must sit within the provider’s control and be measurable in a reasonable window, which for a slow disease argues for rewarding verified service events rather than distant epidemiological shifts. Verification cost decides feasibility. And pre-financing decides participation: small facilities and volunteer networks cannot bankroll months of work awaiting payment, so the poorest actors are exactly the ones who need capital provided up front.
That literature neither proves such an approach would work in leprosy nor proves it cannot. What it establishes is that the mechanisms exist, that their failure modes are well understood, and that nobody has yet made the serious attempt to adapt them to a neglected disease whose defining problem is the last mile.
Where the Argument Will Meet Resistance
A candid account must name the tensions, because pretending they do not exist is how good ideas die quietly.
Shifting value and decision-making toward the last mile touches established roles, reporting lines and budget control, and the reasonable question from a national programme is not whether the idea is good but who is accountable when it goes wrong. A decentralised model that leaves the centre without the information it needs will not survive its first supervision visit; the objective is not to route around central structures but to make their job easier while the work is done closer to the patient. Incentives, if they reach frontline actors, have to be transparent and able to survive a change of government. The question of what happens when external funding stops is the one that determines whether any of this is real — a design that only works while the grant lasts is a project, not a service model. Data that makes health workers and patients more visible also makes them more exposed, and consent, ownership and the limits of automated judgement must be settled before, not after, deployment. And technology cannot substitute for capability: no application delivers disability care where no one has been trained and no supplies exist.
Questions for Reflection
What remains is less a proposal than a set of questions the sector has not yet answered, and which may usefully be argued over rather than resolved.
Which outcomes are sufficiently meaningful, measurable and within a provider’s control to be worth paying for — and which should explicitly not be reduced to a metric? What concrete mechanisms would keep value at the edge, where the work happens, rather than letting it be captured by the centre? Which functions genuinely improve when pushed outwards, and which must stay central for safety and equity? What independent evidence would be needed before trusting automated verification in a national programme? And what would a health department need to see — in cost, evidence and exit routes — to pilot a different model in a single district, and to keep it standing if every external funder left?
The ambition behind the questions is deliberately modest in means and demanding in aim: to give the people who already do the work the tools, the information and the recognition that actually reach them, and to let the value they create finally reach the people affected by the disease.
Sources
World Health Organization, Leprosy (Hansen’s disease) fact sheet; and Global leprosy (Hansen disease) update, Weekly Epidemiological Record.
World Health Organization, Towards zero leprosy: global leprosy (Hansen’s disease) strategy 2021–2030 (2021); and WHO technical guidance on contact tracing and post-exposure prophylaxis.
World Bank evaluations of Argentina’s Plan Nacer / Sumar programme (Gertler et al., 2014, and subsequent literature).
Documentation of results-based financing and development impact bond programmes, including the Utkrisht maternal and newborn care bond (India) and outcome-linked community health worker funding (Living Goods).
Grover, D, et al, “Using supervised learning to select audit targets in performance-based financing in health”, PLOS One (2019), on machine-learning targeting of verification audits.