Access delayed, rights denied

This year’s report to the UN General Assembly by the UN Special Rapporteur for leprosy, Beatriz Miranda Galarza, focuses on bottlenecks in the leprosy drug supply chain and their impact on affected persons. The Special Rapporteur’s starting point is that timely access to medicines and treatment is a fundamental human right. Since delays in leprosy medicines proportionately affect marginalized populations, and present greater risk of disability, this basic right is reinforced by the Convention on the Rights of Persons with Disabilities. This obligates States to ensure equality, including adequate healthcare, for persons with disabilities, including those affected by leprosy. How then to respond to what happened in Nigeria in 2024, when delays in MDT supply resulting from new domestic testing rules and bureaucratic delays affecting around 3,000 patients including 800 children?

Right to treatment

The Special Rapporteur makes the case that a human rights-based approach links access to medicines with broader State obligations to eliminate discrimination, marginalization and health inequities.  She observes that WHO includes multidrug therapy for leprosy (MDT) on its Model List of Essential Medicines that require continuous availability. She then considers the issue from the perspective of international legal obligations and the CRPD and other global human rights conventions, and gives examples of courts in leprosy-endemic countries that have interpreted access to medicines as an enforceable human right.

Leprosy drug supply chain

The Special Rapporteur then examines the supply chain for MDT, remarking that this is especially important because, unlike many other drugs, MDT is not commercially available. Her report covers manufacturing and production, forecasting and procurement planning, donor coordination and international procurement, international shipping and customs clearance, and national warehousing and internal distribution. For each element, she provides specific examples of bottlenecks that have caused, or have potential to cause, delays preventing patients from getting the drugs they need. For readers interested in how the supply chain works and what can go wrong, this is instructive material.

Impacts on persons affected by leprosy

The Special Rapporteur describes the negative consequences of treatment delays caused by drug stock-outs. She describes impacts in terms of greater risk of nerve damage and disability. There is also mention of drugs to treat leprosy reactions, and the report comments that these drugs are poorly prioritized, excluded from essential medicine lists, and face regulatory, funding, storage and distribution challenges. The report also looks at other consequences. Anxiety, depression and suicidal ideation are common among persons facing uncertainty about treatment. There are also economic and livelihood effects. The report summarises this section pointing out, among other consequences, that non-supply of essential leprosy medicines amplifies the risk of the disease spreading to close contacts, and that increased physical impairments as a result of delayed treatment have lifelong impacts on the individual – as well as costs to the state health system.

Conclusion and recommendations

The Special Rapporteur summarises her conclusions at the end of the report, along with a set of recommendations to UN member states and other stakeholders. She reiterates that access to leprosy treatment is a human rights issue, and that in leprosy the drug supply chain is fragile and donor-dependent: bottlenecks exist at every stage and may cause cumulative delays which have life-altering consequences for patients and their families. Overall, she finds that States have limited ability to forecast, procure or track medicines independently. One result is erosion in public trust in the health system.

The recommendations are comprehensive. The first set of recommendations covers the elements of the supply chain: ensuring predictable and timely supply of leprosy medicine, strengthening forecasting and procurement systems, addressing regulatory and customs delays, and improving last-mile delivery and storage. There are also recommendations around involvement of persons affected by leprosy in supply chain monitoring, redress for persons suffering negative consequences from delayed treatment; and working towards greater national self-sufficiency and less reliance on aid.

Global leprosy (‎Hansen disease)‎ update 2024: Beyond zero cases – what elimination of leprosy really means

ILEP Technical Commission commentary

The Global Leprosy Update for 2024 has been published by the WHO Global Leprosy Programme in the Weekly Epidemiological Review (WER) and updated in the Global Health Observatory. This much-awaited report has a mix of encouraging trends and a few issues of concern. The report applies the Leprosy Elimination Framework (LEF) published in 2023, to track progress.

It is encouraging to see 188 countries reporting in 2024 (an increasing trend), from all 6 WHO regions including all 23 of what WHO classifies as global priority countries for leprosy. However, a notable exception has been the United States of America which did not submit data despite consistently submitting data in previous years. This is an issue of concern since state-level reports indicate detection of new locally acquired cases in 2024. Globally, 172,717 new cases of leprosy were reported in 2024 including 9,397 children, 69,394 (40.2%) women and 9,157 (5.3%) with Grade 2 disability. Though new cases overall have decreased by 5.5% compared to 2023 (182,815), there are mixed trends in new case detection data among the global priority countries. Thirteen of the 23, including India, have shown a decrease while the remaining 10 have shown an increase of around  25% (e,g. the Philippines, Comoros and Sudan). It is a matter of concern that the 10-year trends for new case detection in some of the 23 global priority countries seem to be stagnant. The decreased number reported by India (approximately 7,000 cases) may be due to lack of activities (case detection campaigns). On the other hand, this decrease could be a true reflection of the leprosy situation in the country, as it is in line with decreasing numbers (new patients as well as the child rate) in the previous years. Perhaps this may be a positive development.

Unfortunately, the decrease in new case detection in South Sudan (by 60.2%), Somalia (by 34.2%) and Ethiopia (19.3%) is most likely due to worsening security affecting leprosy programmes.

Using a DHIS2-based software allows for more detailed and disaggregated data on leprosy cases to be reported to the WHO. New child cases reported were 9,157 which is a slight decrease from 2023 (10,322). An interesting metric is the disaggregated age-related data for 2,298 of these new child cases reported by 56 countries. 78.8% were aged 10-14 years, 22.6% aged 6-9 years and 4.6% aged <6 years. This implies that almost 25% of new child cases are under the age of 10 and need an adapted MDT regimen from the standard child pack which is supplied by the WHO for children aged 10-14. A matter of concern is the number of children with Grade 2 disability at the time of diagnosis – 289 (3.1%). This implies not only delayed diagnosis but also a new generation having to grow up with the burden of leprosy-related disability.

Encouragingly, 75 countries submitted data on leprosy reactions (14,689 cases with Type 1 reactions and 5,652 with ENL). This data most likely reflects the presence of reaction at the time of initial diagnosis, and the number is most likely much higher as a large percentage of persons diagnosed with leprosy develop reactions after starting MDT. Hopefully, this data will start to appear in future reports, especially for reactions that may have happened during the period on MDT. For the first time, nerve function assessments done at the completion of treatment were reported for almost 16% of new cases.

A major area of concern is that the active case finding data is very limited, with only 90 countries (including 20 global priority countries) providing data on contact screening (9,914 new cases detected through contact tracing). Of these, only 37 countries (including 9 global priority countries) provided data on PEP provision. The reasons for this are unclear, but may include some academic objections and, probably more importantly, significant inertia and logistic difficulties, as well as availability of rifampicin.

MDT, with its ability to quickly reduce infectiousness and limit disability, has to be taken regularly and completely to maximize and safeguard its impact. Out of the record 188 countries reporting this year, data on treatment completion rates for MB and PB were available for only 96 (representing ≈51%) and 81 (representing ≈43%) countries, respectively. Additionally, antimicrobial resistance (AMR) reports were received from only 23 countries. An issue of concern here is that India has not submitted AMR data for the past 3 years. Urgent deliberate actions are required to improve treatment and AMR surveillance and reporting as critical quality measures of leprosy control services.

Whilst surveillance is below standard recommendations, for countries with available data, treatment completion rates were highly variable and sub-optimal (<85%) in 9 countries for MB and 7 countries for PB, while a worrying total number of 4,365 individuals (3,850 diagnosed as MB and 515 diagnosed as PB) were lost to follow-up during the reporting year. Additionally, out of 2,109 cases tested for resistance, 27 cases were resistant to rifampicin (26 of these were re-treatment cases), 23 to dapsone (20 of these were re-treatment cases) and 4 re-treatment cases were resistant to both rifampicin and dapsone. Tailored interventions to support adherence to MDT are urgently needed.

The number of countries that reported adverse drug reactions in relation to MDT increased, with 32 countries reporting a total of 263 adverse drug reactions of which 235 were related to dapsone. Continuing to gather data on this issue will support the research for newer anti-leprosy drugs.

The report also highlights 81 discriminatory laws reported by countries. However, ILEP’s database shows 140 discriminatory laws. This difference in numbers is mainly because WHO’s report includes information directly reported by countries through DHIS2. Perhaps ILEP should coordinate with WHO to reflect the correct number of discriminatory laws in existence.

In summary, it is encouraging to see an increasing number of countries reporting leprosy data and a decreasing trend in the number of new cases detected, including a continuous gradual reduction in the child rate over the last 15 years. However, critical challenges also remain and need to be addressed. These include ongoing transmission, stagnant or increasing burden of new cases in some of the 23 priority countries, low participation from countries in AMR surveillance and increasing number of cases in island countries despite ongoing, active work. If the good progress achieved thus far is to be consolidated, more countries need to be encouraged to do active case finding through contact screening and PEP.

Of note, Jordan became the first country to be verified and acknowledged by WHO for the elimination of leprosy disease in 2024. The year 2025 marks 50 years of WHO’s partnership with the Nippon Foundation and 25 years of partnership with Novartis – this is the foundation for the global provision of MDT, so a definite cause for celebration.

The WHO report ends with an important message: “a person-centred approach must remain integral to all efforts!”

ILEP Technical Commission

October 2025

NNN Conference 2024

The annual conference of the Neglected Tropical Disease NGO Network (NNN) has just finished in Kuala Lumpur, Malaysia. Once again, there was strong representation from the leprosy world including from ILEP members, seven of which contributed to sponsorship of the event. Around a quarter of attendees had connections with leprosy organisations, and most of them participated in a three-hour leprosy group meeting. A related highlight was the participation of persons affected by leprosy, LF and Buruli ulcer. Indeed, participation by affected persons, especially in research activities, was a theme featured in several conference sessions.

Leprosy group meeting

More than 50 participants joined the two 90-minute sessions of the leprosy group meeting. This year’s meeting covered three topics, only one of which was strictly leprosy. Wim van Brakel (chair of the ILEP Technical Commission) presented the WHO Leprosy Elimination Framework with a particular focus on the practical use of the Leprosy Elimination Monitoring Tool. Constanze Vettel (from ILEP member German Leprosy Relief Association) promoted the use of the NTD Inclusion Score Card (NISC) with particular reference to the impact of the use of this tool globally within GLRA. The second 90-minute session, led by ILEP CEO Geoff Warne, focused on identifying and overcoming the obstacles to the participation of persons affected by NTDs in research, especially operational research.

Anil Fastenau (GLRA) and Inés Egino (Anesvad) also led a one-hour special plenary session on the topic of participation in research, featuring the testimony of persons affected by NTDs from Sierra Leone, Nigeria and Liberia.

Sponsorship

ILEP was once again a Platinum sponsor of the NNN Conference thanks to financial contributions by The Leprosy Mission, NLR, GLRA, Lepra, SLC, FAIRMED and Fontilles. Associated with our sponsorship was a movie night in which ILEP members were well represented with some excellent short films.

Sungai Buloh

The ILEP Secretariat took the opportunity to organize a group visit to the Sungai Buloh leprosarium, on the outskirts of Kuala Lumpur. At its peak in the 1930s, this was home to more than 2200 men, women and children suffering from leprosy, and 80 mostly very old ex-patients still live there today. ILEP member Sasakawa Health Foundation has enabled the construction of a well-designed museum that shows the history of this place, and is advocating for its recognition as a UNESCO Heritage Site.

NNN’s future

The NNN Executive Committee has agreed on the need for a comprehensive review of NNN’s work, effectiveness, structure, operating model and sustainability. The outline and purpose of this review were described at an NNN members’ lunch meeting. The review is expected to run till mid-2025.

Global leprosy (Hansen disease) update 2023: Elimination of leprosy disease is possible – Time to act!

Commentary: Dr Paul Saunderson

The WHO Global Leprosy Programme has published the Global Leprosy Update for 2023, available on the WHO website. The report focuses on the new Leprosy Elimination Framework, published during 2023. The Framework consists of three distinct phases, which are easily described and understood, and appear to be scientifically robust.  As long as the data are available, it is not difficult to see where any particular area (be it a country or a sub-national region), sits in the Elimination Framework.  This Framework makes it easy to target our activities, so it is indeed time to act!

The first phase ends when the transmission of M leprae in that area has ceased – now defined as having registered no child cases of leprosy (under 15 years of age) for at least five years.  An Excel-based tool, known as the Leprosy Elimination Monitoring Tool (LEMT), allows data to be recorded for each sub-national area (for example, each district), each year. The LEMT automatically classifies the concerned areas into the appropriate, colour-coded elimination phases according to the Leprosy Elimination Framework. It thus displays progress towards the elimination targets over time, for each district, and in aggregate, for the country as a whole.

One of the numbers in the report that struck me as particularly significant was that of 184 countries reporting, 110 reported zero child cases (see p 505 of the report), and according to the tabulated data, another 38 countries reported fewer than 10 child cases.  This suggests that 148/184 (80%) of countries that reported are making good progress towards the end of this first phase of leprosy elimination.  Every country and every sub-national area is different and on a different trajectory, but once data-points are plotted over a number of years, any progress can be seen, and areas with slower progress can be identified and assisted.

A second number (on page 508) was much more worrying.  It is stated that of the 182,815 new leprosy cases reported, only 14,908 (8%) were detected through active case finding.  Clearly this is not necessarily a very accurate figure, as some programs do not report it, but it may help to remind us that active case-finding (at present contact examination is the favoured method, and skin camps have proven very effective in many communities in Africa) is the key activity in any effort to ‘end leprosy’.  It is also a common finding that when active case-finding is done rigorously in any particular endemic area, the number of new cases identified is usually higher than expected, suggesting a significant under-reporting of new cases globally.  If post-exposure prophylaxis (PEP) is to be given, as recommended by WHO, it is easily carried out in the context of contact examination or a skin camp.  It is unfortunate that the WHO update does not yet include more detailed statistics of active case finding and of PEP administration, as these are currently optional reporting fields.

Even people who do not favour PEP usually emphasize active case finding, which can be very successful over time, if carried out rigorously (for example, the decades long programme in Malawi reported by Prof Paul Fine and colleagues¹). Another important reason to emphasize contact examination is that, by identifying new cases early, a significant decrease in disability can be achieved.

In summary, the good news is that many countries and many sub-national regions are making good progress towards zero leprosy.  The main challenge, however, is to greatly expand active case-finding – particularly through contact tracing – in the remaining endemic areas, especially in the 23 WHO priority countries. This is a time-consuming and costly exercise, but it can be made much more efficient by carefully targeting hotspot areas. These can be identified by various mapping techniques and the LEMT is one of the best tools available, with its own built in mapping function (in preparation).  While the new WHO paradigm gives us a framework for action, active case finding should be the main focus of our activities, ideally supplemented with PEP.

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¹ LEP – KPS Team; The epidemiology of leprosy in Karonga District, northern Malawi 1973–2023: An analysis of leprosy’s distribution, risk factors, control and decline in rural Africa; Leprosy Review. 2024; 95; 1; 7-84; DOI: 10.47276/lr.95.1.7

UN Special Rapporteur’s vision

In June, Beatriz Miranda Galarza, the UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy (Hansen’s disease) and their family members, presented her first report to the UN Human Rights Council. The report describes the impact of the mandate since its establishment in 2017, her vision and priorities for the coming years, and her intended method of work. The report was informed by extensive consultation with persons affected by leprosy, as well as other stakeholders including ILEP.

Background: four approaches

The report begins with a description of the historical struggle of people affected by leprosy, from exclusion to recognition as holders of rights. The four approaches are the religious and moral approach, the scientific and administrative approach, the representative and cultural approach, and the human rights-based approach. The Special Rapporteur points out that these approaches may co-exist and that each has a positive contribution to make (as well as some negative implications).

Voice of persons affected by leprosy and their organizations

Consultations by the Special Rapporteur revealed positive effects, especially at the international level, since the mandate was created in 2017. At the local level, there are also positive effects. For example, some grass-roots organizations are more aware of violations of the rights of persons affected by leprosy in their own communities. For some organizations of persons affected by leprosy there is greater recognition than before, due to participation in human rights events related to leprosy and engagement with the United Nations. This effect was especially striking in countries where the Special Rapporteur had made country visits.

Key priorities for the mandate

Following consultation, the Special Rapporteur has selected five main priority areas for the next three years.

• Rights-based systems surrounding support and care for leprosy within the family and communal context, guided by reliable data regarding the mental, social and economic impact of leprosy on affected persons and their families.
• Intersectional issues and marginalized groups, with a focus on the challenges that persons with leprosy-related disabilities face in their daily lives, and particular reference to the circumstances of children, women, young people and older persons.
• Social, political and cultural considerations. These include the strengthening of social movements and activism, tackling the difficulties experienced by organizations of persons affected by leprosy, the preservation of leprosy history, living conditions in leprosy colonies or settlements, and migration factors in leprosy.
• Legal and economic dimensions – action on discriminatory laws, poverty and the need for socioeconomic empowerment.
• Environmental and conflict-related considerations, including factors such the effects of conflicts in worsening the already precarious living conditions of leprosy-affected communities, and the effects of climate change.

The first of these priorities will be the theme of the Special Rapporteur’s 2024 report to the UN General Assembly. Others on the list will no doubt emerge as themes for subsequent reports.

Guiding principles for the mandate

The Special Rapporteur has expressed three main principles that will support her mandate. They are:

• An ethics of care as a fundamental aspect of human life, challenging the sometimes negative attitudes around care and support.
• Contribution to a culture of listening to persons affected by leprosy. ‘The right of persons affected by leprosy to participate at every level of public and private life will not be realized unless listening is embraced as a practice that evolves into a culture.’
• Promoting cooperation and the co-production of policies and strategies, not only to support the mandate but to realize the goals of the leprosy rights movement as a whole.

To quote from the conclusion of her report, the Special Rapporteur ‘will promote a human rights approach guided by an ethics of care that places people’s voices at the centre and as the primary source of evidence, thereby contributing to the construction of a culture of listening and more equitable and just societies. The Special Rapporteur underlines the particularity of leprosy (Hansen’s disease) as a catalyst of social, political and cultural change, serving as a beacon for a more democratic, humane and diversity-respecting world. In the present report, she underscores the significant transformation for individuals affected by leprosy, as well as their families, organizations and allies, brought about by the implementation of the mandate.’

CRPD Conference of State Parties

ILEP member The Leprosy Mission (TLM) attended the United Nations’ 17^th Conference of State Parties (COSP) to the Convention on the Rights of Persons with Disability (CRPD) this month. The COSP presents an opportunity to speak about the rights of persons affected by leprosy, usually as the only voice for the disabling effects of leprosy and NTDs.

Side event

TLM hosted a side event on the rights of persons with disability to work, partnering with the Government of Malta and others. The meeting room was full, but the UNTV recording of the event is here. The panel included OPDs, UN entities, the World Bank, and academia, with a keynote address by  Ms Heba Hegrass, UN Special Rapporteur on the Rights of Persons with Disability.

Speeches at the conference

Two persons with lived experience of leprosy spoke at the conference. Amar Timalsina spoke during the Civil Society Forum on the right to work, with a particular focus on best practice. Mathias Duck made a speech during the general debate, asking delegates to remember leprosy and persons affected by leprosy through their work.

Progress on discriminatory laws

One of the founding principles of the CRPD is that there will be no discrimination in law against persons with disabilities. This makes the COSP an ideal space to talk to countries about laws that discriminate against persons affected by leprosy. At the last COSP, TLM started dialogue with Malta about an outdated discriminatory law which is now on the verge of repeal. Malta has offered support in speaking to the other nine Commonwealth nations with discriminatory laws. This year TLM started conversations with Australia about repealing two recently discovered discriminatory laws, and either continued or initiated linkages with UAE, Egypt, and Barbados which confirmed that a previous discriminatory law has been repealed.

CRPD Committee

The CRPD Committee is the body who is responsible for holding states accountable for their actions to implement the CRPD. The COSP elected new Committee members from Dominican Republic, the EU, Japan, Jamaica, Nigeria, and Uruguay. These individuals are in a position to draw the Committee’s attention to the rights of persons affected by leprosy, so they are valuable contacts.

Meeting with OPDs

The voices of persons affected by leprosy can be stronger when they are a part of the wider voice of the disability movement. When states seek to consult with Organisations of Persons with Disability (OPDs), for example, it is important that organisations of persons affected by leprosy are included. TLM built on the dialogue at the ILEP-hosted webinar on people’s organizations, which took place in January, by speaking to several OPDs that attended COSP17 to find out how organizations of people affected by leprosy can engage with these wider networks to have their voices heard.

Global Disability Summit 2025

Next year, the Global Disability Summit will be hosted in Berlin in April. At COSP17, the Summit hosts (Germany, Jordan and the International Disability Alliance) launched the commitment portal for the Summit and called on states, NGOs, funders and others to make measurable, impactful commitments related to the CRPD and SDGs. This year the portal allows for commitments in partnership with others, so ILEP members can make joint commitments or partner with other actors.

In the words of the organisers, ‘the process of developing the commitments is as important as the commitment itself’. IDDC offers briefing sessions on the Summit on 24 July and 25 September.

World Summit for Social Development 2025

This summit, scheduled for 2025, follows the major Summit for the Future in September, and is being pitched as an opportunity to reduce inequalities and to promote social justice, inclusion, equity and non-discrimination.

Any questions on COSP17 of the above developments can be directed to Mathias Duck and Tim Burton.

77th World Health Assembly

The ILEP Secretariat was in Geneva during the seventy-seventh World Health Assembly, held in the last week of May. The Assembly is the peak event for WHO each year. Big-picture outcomes this year were the adoption of WHO’s strategy or plan of work for 2025 to 2028, a resolution on climate change and health, and a resolution on social participation with a particular focus on promoting the voices of people in marginalized situations. But in addition to the main meetings there is a wide array of side events and opportunities for linkages and networking.

WHO Plan of Work 2025-2028

The Plan of Work – which is summarised in the table below – is important to ILEP and its members. Partly that is because organizations in official relations with WHO – like ILEP – are expected to develop and report on three-year cooperation agreements that need to link with the Plan of Work. But also, as ILEP members interact with WHO both globally and at country level, it is relevant to be able to refer to those elements of the Plan of Work that ILEP members are working collaboratively towards. The second objective (social determinants), third objective (health systems, including data) and fourth objective (especially equity of access to health services) seem particularly relevant. See here for the Director-General’s report that contains the 2025-2028 Plan of Work.

Climate change and health

In passing this resolution, Member States built on previous decisions that recognised the inter-relationship of climate change and health. The resolution points out that the pace and scope of mitigation and adaptation efforts are being surpassed by climate change threats, and that any further delay in concerted global action will miss a brief and rapidly closing window of opportunity to secure the goals of health and wellbeing for all.  It also points out that climate change is worsening existing health inequalities and that people in marginalized and vulnerable situations can be most at risk of negative climate change impacts. The commitments agreed by Member States are arguably not as strong as the identified risks, but there is agreement to strengthen the implementation of WHO’s global strategy on health, environment and climate change, without diverting resources meant for primary health care. Members interested in ongoing advocacy on the effects of climate change may find it relevant to look more closely at the resolution and also at the forthcoming global plan of action on climate change.

Social participation for universal health coverage, health and well-being

WHO defines social participation as empowering people, communities and civil society through inclusive participation in decision-making processes that affect health. This resolution repeated previous agreements about the need to promote participation of people in vulnerable and/or marginalized situations including persons with disabilities and those who are furthest behind. The resolution urges Member States to implement, strengthen and sustain regular and meaningful social participation in health-related decisions. The relevance for ILEP members working with people affected by leprosy is obvious. We recommend close study of the resolution especially by ILEP members that are working to empower organizations that represent persons affected by leprosy in interaction with central and local governments.

Skin Diseases as a Global Public Health Priority

This well-attended side event was hosted by the International League of Dermatological Societies (ILDS) and GlobalSkin, an international alliance of patients of skin diseases. Presenters showed that skin diseases stand in seventh place in terms of YLDs (years of healthy life lost to disability and illness) and affect 5% of the global population at any given time. Perhaps less surprising was the comment that data quality is a major issue across most skin diseases – not just skin NTDs. Follow-up actions by the ILEP Secretariat will include:

• Reconnection with GlobalSkin to advocate for inclusion of organisations of persons affected by leprosy and other skin NTDs in their networks. We previously discussed with GlobalSkin the limitations of the word ‘patients’ in their name and we will continue to develop that theme.
• Further discussion with Dr Kingsley Asiedu (WHO) around a comment in his speech urging ILEP to be more involved in the general skin diseases community.
• Response to a planned WHA resolution on skin diseases, proposed by ILDS, GlobalSkin and other stakeholders. The plan is to bring a resolution for the consideration of the WHO Executive Board in January 2025, calling for investment to expand expertise in skin diseases especially at PHC level; to expand research capacity to provide innovative diagnostic tools and new treatments for skin diseases; and to strengthen global skin health databases to inform planning needs and monitor progress.

COR-NTD funding opportunities

COR-NTD is the Coalition for Operational Research on NTDs, one of the programs of the Task Force for Global Health. This year COR-NTD has decided to host regional events instead of its usual large annual event in the USA. The first of these, in April 2024, was in Delhi, co-hosted by the WHO South East Asia region. There are plans for events in the WHO Western Pacific region in September and the WHO Africa region possibly in December.

Integrated surveillance

The main theme of the Delhi meeting was opportunities for integrated NTD surveillance, specifically including leprosy, both before and after interruption of transmission has been verified. Several presenters commented that in the South East Asia region there are several disease surveillance processes, including in TB, malaria and other vector-borne diseases. The idea is not to take a prescriptive approach but to find sustainable surveillance models into which leprosy and other skin NTDs can be integrated. The benefits of integrated surveillance seem clear: it is effective in reaching multiple diseases, it is efficient in terms of time and money, and it is better for community members because of attention to multiple diseases at the same time. But presenters also highlighted various challenges to integrated surveillance: the additional logistical work required; the need for a ‘win’ for all the diseases involved; financial constraints and the need to build agreement with multiple donors; the need for the selected approach to be sustainable over several years; and the reality that NTDs may need to compromise their expectations in order to gain access to existing surveillance programs.

COR-NTD funding

Although COR-NTD’s main priorities have been diseases other than leprosy, Pat Lammie (COR-NTD President) said that he expects leprosy to be more of a focus in 2024 and beyond. Partly this reflects an ongoing trend in the approach of the United States Agency for International Development (USAID). COR-NTD has been awarded a new cooperative agreement with USAID entitled Ending Neglected Diseases through the Operational Research Program. To illustrate, Dr Lammie commented on USAID’s offer of funds to WHO regional offices to come up with new initiatives across any of the NTDs; on USAID’s increasing interest in skin NTDs; and on the availability of funding for diagnostics and morbidity management, both highly relevant for leprosy.

Operational research into integrated surveillance

Pat Lammie and other senior COR-NTD personnel made it clear that research into how leprosy and other NTDs can be integrated into existing surveillance systems is a fruitful topic for their operational research funding. The preference is for multi-country studies, though COR-NTD would consider a clear justification for why a country’s uniqueness may lead to the need for single-country research. Research also needs to be actionable, or solution oriented. For example, COR-NTD would like to see operational research that tests the efficacy of different NTD integration approaches in different settings.

We recommend that Members continue to check the COR-NTD website for any upcoming calls for open solicitations: https://www.cor-ntd.org/funding-opportunities.