Fw: Ref.: (LML) Last mile outcomes in Leprosy care, pushing the value chain to the edge. Part 2.

 

Leprosy Mailing List –  September 28,  2026

 

Ref.:  (LML) Last mile outcomes in Leprosy care, pushing the value chain to the edge. Part 2.

From: Arie de Kruijff, Kijabe, Kenya

____________________________________________________________________________

 

Note editors:

Last week, September 23, 2026,  we published the first part of Arie de Kruijff’s essay  “Last mile outcomes in Leprosy care, pushing the value chain to the edge”. We thought this excellent and thoughtful but lengthy contribution better be divided in two parts to improve readability.

 

Last mile outcomes in Leprosy care, pushing the value chain to the edge. PART TWO OF TWO · CONCLUSION

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.

____________________________________________________________________________

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/4cfda758-9d4a-45a0-8779-e4f0fb045aa7n%40googlegroups.com.

Fw: Ref.: (LML) Last mile outcomes in Leprosy care, pushing the value chain to the edge. Part 1.

 

 

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

____________________________________________________________________________

 

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. —

____________________________________________________________________________

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/a1a890ab-e8e9-4783-84b6-5e14cf713d63n%40googlegroups.com.

Fw: Ref.: (LML) AI in Leprosy - a view from the Philippines

 

Leprosy Mailing List –  September 22,  2026

 

Ref.:  (LML) AI in Leprosy - a view from the Philippines

From: Francesca Cajete, Manilla, the Philippines

____________________________________________________________________________

 

Dear Henk, Pieter, and colleagues,

 

Thank you, Henk, for this very timely and balanced warning — and thank you to Pieter for sharing the Hinton excerpt and the INFOLEP collection.

 

As we in the Philippines finalize our NLCP Manual of Procedures,the Philippine Leprosy Corpus,  — with WHO WR, DOH NLCP,Philippine Dermatological Society and The Culion Foundation Inc.— we find AI helpful for organizing literature and drafting, but we fully agree with the cautions raised.

 

From field experience in Culion,Palawan and other regions in the country the risk of false negatives and of AI-generated images that reinforce stigma is real. Our community health workers remain irreplaceable for early detection and for trust.

 

We are therefore adopting the practice now recommended by The Leprosy Review: use AI as assistant only, with all clinical and historical interpretation verified by human experts.

 

Thank you for continuing to mentor us in thinking critically, even after retirement. You shaped many of us in this field.

 

Warm regards from the Philippines,

 

Dr Francesca Cando Gajete,MHA,FPLS

Former National Leprosy Control 

     Program Manager

Member, International Leprosy 

           Association (ILA)

Former Vice President,ILA 

Trustee, Culion Foundation Inc 

____________________________________________________________________________

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/9e65f99e-4be3-407d-9ad9-488193586ff1n%40googlegroups.com.

Fw: Ref.: (LML) Leprosy and AI

 

Leprosy Mailing List –  September 22,  2026

 

Ref.:  (LML) Leprosy and AI

From: Henk Eggens, Santa Comba Dão, Portugal

____________________________________________________________________________

 

Dear Pieter and LML readers,

 

Geoffrey Hinton, co-winner of the 2024 Nobel Prize in Physics and widely known as the “godfather of AI,” has repeatedly warned about the dangers of advanced AI. CEOs of major American AI companies—Dario Amodei (Anthropic), Sam Altman (OpenAI), and Elon Musk (xAI)—have joined his call. These four key figures (the four horsemen) are advocating for constraints on AI development to prevent a potential existential threat to humanity.

In the meantime, we continue to harness AI for our benefit, and specifically for this LML forum, to advance the fight to diagnose, cure, and rehabilitate leprosy patients.

Numerous publications have addressed this topic. INFOLEP provides a great overview featuring 31 publications on the subject:

https://www.leprosy-information.org/search?elasticsearch_index_infolep_prod_resources%5Bquery%5D=AI

I recently came across a publication by The Leprosy Mission that I would like to bring to the attention of the LML readership, titled "Leprosy and AI: Do the pros outweigh the cons?":

https://www.leprosy-information.org/search?elasticsearch_index_infolep_prod_resources%5Bquery%5D=AI

The article summarises the positive contributions AI has made to the leprosy community, such as improving diagnostic accuracy and facilitating data processing for epidemiological purposes. However, it is fairly light on the negative consequences. At the same time, it mentions AI-generated images that could reinforce prejudices; I was able to correct those within five minutes using an AI image tool. Furthermore, the author fails to address the risk that AI applications may produce false negatives when diagnosing skin conditions—for example, missing a leprosy diagnosis altogether. 

Overall, it serves as a helpful, light overview of progress in this field, though INFOLEP's list offers deeper insight into practical field experiences with AI.

 

Best,

 

Henk Eggens

 

PS: AI improved my English 

------
Henk Eggens

(henk.eggens@gmail.com)

____________________________________________________________________________

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/48f0b1c1-d088-4f16-9e53-2cba5e51a245n%40googlegroups.com.

Fw: Ref.: (LML) Long-lasting adverse impact of chemoprophylaxis & what actually works

 

 

Leprosy Mailing List –  September 10,  2026

 

Ref.:  (LML) Long-lasting adverse impact of chemoprophylaxis & what actually works

From: Ben Naafs, Munnekeburen, the Netherlands

____________________________________________________________________________

 

Dear Pieter,

With reference to the letter by Joel dated 7 September 2026, I have rechecked the mentioned paper from Maranhão to see whether I had missed the part about harm to the patients and contacts in it. However, the original papers did not look for it. Their conclusion does not mention harm due to chemoprophylaxis. It says: “The disease distribution was partly explained by poverty indicators. LPEP influences the spatial dynamic of the disease and results highlighted the relevance of systematic contact surveillance for leprosy elimination.”

The chemoprophylaxis trial in Dadra Nagar Haveli district has also no data on harm, it shows only acceptance.

However, Joël refers to: Almeida JG, Talhari S, Salgado CG, Kumar B, Talhari CC, Goncalves HS. Visible deformity after HD (leprosy) chemoprophylaxis among tribal people in India: Quantitative analysis of data extracted from published sources. Indian J Lepr. 2025; 97:175-188. That says:” A particularly serious concern is the paradoxical rise in grade 2 disabilities (G2D) following SDR campaigns in areas such as Dadra and Nagar Haveli. This may reflect progression of subclinical infections despite chemoprophylaxis or diagnostic delays stemming from false reassurance among contacts”.

The cGAS-STING pathway is a central mechanism of innate immunity that detects double-stranded DNA and translates it into transcriptional and other cellular effector responses. Beyond its canonical role in antiviral defence, the pathway senses diverse endogenous DNA species generated as byproducts during various contexts of cell stress. In this capacity, cGAS-STING impacts tissue homeostasis and antitumor immunity, but it is also associated with a number of inflammatory disorders. (Cell Volume 189, Issue 13p3849-3870June 25, 2026)

According to Pinto at al: “thus, our data uncover a pro-mycobacterial role for OASL during M. leprae infection that directs the host immune response toward a niche that permits survival of the pathogen” This means there is no damage to the pathogen.

What does it all mean for possible damage after PEP is given to Leprosy patients and contacts? In my opinion, PEP {killing a few bacilli} will not substantially increase the M. Leprae DNA already present in the cells, to expect that more INF-gamma and IL2 will increase the damage via the cGAS Pathway. The suppression of autophagy may even be beneficial.

Indeed, robust scientific knowledge will benefit the patient. But the findings Joël refers to, are not that robust. Particularly since his interpretation is dubious.

I fully agree that the period of observation is too short, and this is what makes DSMB data not very valuable concerning either a positive effect or eventually harm. As other authors also have mentioned it is for the implementers of the chemoprophylaxis trials to show that no harm is done.

He is completely right that in an endemic area everyone will be infected at some time. It are only the ones who can sustain M. leprae in their cells who can develop leprosy as a disease. This minority can be protected by their adaptive immunity. (hence BCG vaccination). The potential polar LL patients may not be protected at all. The elimination by macrophages is thus only for the minority. His statement that macrophage defences are sabotaged by chemoprophylaxis, if it is true, has yet to be proven.

All leprosy workers are aware of the problems that leprosy constitutes and try to solve it. For one group that solution is PEP but whether it works is doubted by a great number of the LML readers. This doubt has been voiced many, many, times by Joël. But since the awareness is already there, repeating it too often is not necessary.

Warm regards,

Ben

 

Note from LML Board:

Many valuable observations have been made in these discussions about PEP. Many have pointed out the importance of proper research before implementing any intervention (not only regarding PEP, but other issues such as MDT-U, lifelong or 5 years of MDT for MB high shedders, etc.). We recognise that there may be challenges in finding resources for such research. In any case, this kind of bipartisan dialogue on LML is important.

____________________________________________________________________________

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/dcbf251e-da6f-4243-9879-86711a5f0666n%40googlegroups.com.

Fw: Ref.: (LML) Long-lasting adverse impact of chemoprophylaxis & what actually works

 

Leprosy Mailing List –  September 9,  2026

 

Ref.:  (LML) Long-lasting adverse impact of chemoprophylaxis & what actually works

From: Sandra Maria Barbosa Durães, Curitiba, Brazil

____________________________________________________________________________

 

Dear Pieter and colleagues,

Laila makes an excellent point, highlighting the genuine need to base public health policies on scientific evidence. I would add that this applies not only at the national level but also to individual cases; for instance, using unvalidated regimens is highly problematic unless done as part of a research project. In Brazil, some specialists insist on prescribing daily rifampicin—contrary to guidelines—and extending treatment beyond the standard 12 doses when lesions do not fully resolve, a practice that conflicts with current evidence.

As rightly noted, a positive PCR result does not necessarily indicate the presence of viable bacilli, and viability does not automatically imply transmission potential. There have been reports in Brazil of patients with positive PCR results but no clinical symptoms receiving treatment.

Similarly, classifying electroneuromyographic abnormalities—even those accompanied by ultrasound changes—as infection in patient contacts, when there are no clinical manifestations, strikes me as imprecise. I am unaware of electroneuromyography studies involving asymptomatic individuals with no history of leprosy exposure; it is possible that elderly individuals might exhibit abnormalities in these tests—even after age-adjustment—that hold no clinical significance.

Failure to diagnose the disease early is highly detrimental given its potential to cause disability; however, treating individuals who do not have the disease is equally harmful, as the damage caused by stigma and the adverse effects of medication are significant. Furthermore, in the absence of skin lesions, stricter criteria must be applied to establish a definitive diagnosis so as not to overlook other conditions.

Modifications to recommended treatment regimens—whether involving new drugs or changes to the duration of therapy—require controlled studies with long-term follow-up; only in this way can their efficacy be verified.

Best regards, 

Sandra Maria Barbosa Durães 

Associated Professor Clinical Medicine Department - MMc

Fluminense Federal University - UFF

+5521997370722    

duraesandra@gmail.com 

____________________________________________________________________________

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/ad48edff-85bd-4e6f-91cc-758526f7dad5n%40googlegroups.com.

Fw: Ref.: (LML) Long-lasting adverse impact of chemoprophylaxis & what actually works

 

Leprosy Mailing List –  September 8,  2026

 

Ref.:  (LML) Long-lasting adverse impact of chemoprophylaxis & what actually works

From: Laila de Laguiche, Curitiba, Brazil

____________________________________________________________________________

 

Dear Pieter and colleagues,

This discussion brings us, in my view, to a fundamental question: what level of evidence should be required before changing public health policy in leprosy?

We clearly need better prevention, earlier diagnosis and better treatment. However, regarding transmission and prophylaxis, important questions remain unanswered. 

We still need to distinguish exposure, healthy carriage, subclinical infection and disease. 

Anti-PGL-1 positivity may reflect exposure and does not, by itself, indicate disease. 

Likewise, a positive nasal PCR does not necessarily mean viable bacilli, and viability does not necessarily mean infectiousness. 

We still do not know which asymptomatic carriers actually contribute to transmission, or the minimum infectious dose of M. leprae.

This uncertainty has direct implications for PEP. Before treating asymptomatic individuals, we should know better whom we are treating and why: exposure, presumed latent infection, or a demonstrated risk of transmission or progression to disease.

These uncertainties matter when deciding whom to treat, when to treat and with what regimen.

In 2017, in Brazil, I questioned shortening MDT based on the evidence then available for U-MDT. My concern was not resistance to innovation, but the level of evidence required before introducing a major change in public health practice. I believe the same principle remains valid today.

Leprosy control is implemented largely through public health policies. Whether we discuss PEP, early diagnosis, shorter or prolonged MDT, daily rifampicin or new therapeutic regimens, changes in policy should be supported by robust, reproducible evidence of efficacy and safety.

We need innovation. Hopefully, new evidence will lead us towards better prevention, earlier diagnosis and shorter, safer and effective treatment with fewer adverse effects. 

But innovation and scientific rigor must move together.

Best regards,

Laila de Laguiche

____________________________________________________________________________

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/69c8cf45-6a65-482c-9879-7817e4ea8b6an%40googlegroups.com.