WHO NTDs Roadmap: Compendium of M&E Indicators

WHO has published A compendium of indicators for monitoring and evaluating progress of the road map for neglected tropical diseases 2021–2030. The compendium provides a comprehensive set of indicators to track the global effort to control and eliminate NTDs by 2030. They provide a common set of metrics for measuring progress, and help ensure that NTD programs are based on evidence and data.

Each indicator is presented using a standardised template that provides guidance on data sources and methodologies. Explanatory detail within the templates includes a clear definition of what is being measured, the unit of measurement including numerator and denominator when relevant, method of measurement or estimation, frequency of reporting, data source, and the primary level and frequency of measurement.

There are templates for each of the four over-arching target indicators:

• Number of countries that have eliminated at least one NTD.
• Number of NTDs that are eradicated.
• Reduction in disability-adjusted life years (DALYs) related to NTDs.
• Reduction in estimated number of people requiring interventions against NTDs. This provides a measure of changes in the disease burden over time.

These are followed by templates for ten cross-cutting target indicators:

• Access to at least basic WASH in NTD-endemic areas.
• Integrated treatment coverage index for preventive chemotherapy.
• Number of countries adopting and implementing integrated skin-NTD strategies.
• Reduction in the number of deaths from vector-borne NTDs.
• Share of countries collecting and reporting NTD data by gender.
• Share of countries including and budgeting for NTD interventions in their packages of essential services.
• Share of countries reporting on all relevant endemic NTDs.
• Share of countries with guidelines for management of NTD-related disabilities within national health systems.
• Share of countries with NTDs integrated in national health plans.
• Share of population at risk protected against catastrophic out-of-pocket expenditure due to NTDs.

For leprosy, the four indicators are the same as in the Global Leprosy Strategy 2021-2030:

• Rate (per million population) of new cases with grade-2 disability.
• Annual number of new cases detected.
• Number of countries with zero new autochthonous leprosy cases.
• Rate (per million child population) of new child cases with leprosy

Again, there are clear and informative templates providing guidance on each of these.

The indicators serve as a valuable tool for governments, NGOs, and other stakeholders to track and evaluate their efforts in the global fight against NTDs, to identify areas where progress is falling behind expectations, and to guide decision-making.

Changing discriminatory laws

At the International Leprosy Symposium in January, Brent Morgan shared the experience of ILEP member The Leprosy Mission (TLM) in working towards the repeal of all laws that discriminate against persons affected by leprosy. These laws exist in at least 23 countries, and include 93 laws in India alone, mostly at subnational (state) level. ILEP members are working in India with organisations of persons affected by leprosy and the Vidhi Centre for Legal Policy, in efforts to repeal or amend these laws.

In Nepal, persons affected by leprosy, ILEP members and others have been working closely together over several years to have a discriminatory marriage law amended. The Law Council and Justice Ministry have prepared a proposal to be tabled in parliament, and a strong consensus of support has built up in support of amendment, which it is hoped will pass in 2023.

Overall, TLM’s experience has been that there is no one set lobbying approach. Different government departments can be key actors in different jurisdictions. In India, for example, TLM’s starting point is to work with State Disability Commissioners, but lobbying is often undertaken with other duty bearers as well. Sometimes, government officials are unsure of how to proceed rather than being unwilling to do so. In one jurisdiction TLM has been asked to assist in drafting five sets of amending legislation. Since each government or jurisdiction is different, lobbyists need to tailor their approaches.

Some other key lessons from TLM’s experience are:

• Significant time is needed to lobby many different government departments and officials.
• Government officials change: sometimes the whole lobbying process needs to start again.
• Involvement from the highest levels of government is more likely to be successful.

Repealing discriminatory legislation is important, but not enough by itself. Customary laws, traditions and societal attitudes remain a major barrier to achieving zero discrimination at community level. Brent described three interventions TLM is undertaking to promote zero discrimination:

1. Livelihoods. TLM’s observation is that persons affected by leprosy who have an income or livelihood are less likely to be discriminated against. Hence the investment by TLM, and some other ILEP members, in livelihoods and employment programmes.
2. Self-Advocacy by persons affected by leprosy. This is seen as the most effective advocacy. TLM trained 8,500 people in self-advocacy in 2021 and is currently following up to find what type of advocacy these people engaged in after the training, and what impact that had.
3. Mobilisation of persons affected by leprosy through self-help groups. TLM, one of several ILEP members working with self-help groups, supports 2,200 groups globally. In group surveys, 95% of group members say they have improved social inclusion in their communities

Zero is possible!

At the International Leprosy Symposium at the Vatican in January, Dr Benedict Quao shared his experiences on participating in the implementation of the Global Partnership for Zero Leprosy (GPZL) country model in Ghana, Uganda and Nigeria. Dr Quao is National Leprosy Programme Manager in Ghana and a member of the GPZL Leadership Team, and is thus exceptionally well-placed to give an informed overview.

Impact of the GPZL Country Model in Ghana

New leprosy case numbers in Ghana have stabilised at 260-280 cases per year since 2017 following a decline from more than 1,000 cases per year at the beginning of this century. The proportion of new cases with Grade-2 disability has crept up to around 15% in recent years. These factors prompted the Ministry of Health in Ghana to invite GPZL to begin to implement its country model. A country review in 2020 led to the adoption of a zero leprosy roadmap, followed by development of a detailed action plan in 2021.

The action plan involved participation by fifteen separate Ghanaian and international partner agencies, which committed to provide the technical, financial and political support needed to reach its goals. The action plan was built around the four pillars of the WHO Global Leprosy Strategy 2021-2030, with specific and quantifiable deliverables within each pillar.

Positive impacts of the country model, seen especially since the adoption of the action plan, include:

• Increased visibility of leprosy within and outside the health system. Examples include facilitation of approvals through enhanced engagement of senior leadership of services; provision of extra technical services to the Programme; the engagement of top-level political leaders; and the inclusion of leprosy in recent health services economic modelling done with support of WHO and UNDP.
• Bringing together of existing partners, who were previously not well aligned, around a common focus.
• Increased involvement by District Assemblies Common Fund, resulting (for example) in investment in a leprosy research facility and much-needed renovations at facilities including the national leprosy referral hospital.
• Increased collaboration with other NTDs.
• Implementation of new interventions including geo-localisation, SDR-PEP pilots, and a revamped morbidity management and disability prevention (MMDP) programme.

Observations on the GPZL Country Model in Uganda and Nigeria

Uganda was the first GPZL partner country to use some of the revised country model tools and processes developed in 2021, and the full set of tools was finally available for the Nigeria review. Experts for both countries were selected for involvement in the country review based on leprosy expertise, prior evaluation and local experience, and ability to travel with no restrictions due to the ongoing pandemic. There was remote support from the GPZL secretariat. In both countries, the leprosy programme is combined with TB, and a relevant feature was that the national TB/Leprosy Strategic Plan had expired or was shortly due to do so. Additionally, in Nigeria, the combination of Buruli ulcer into the leprosy programme’s scope allowed the external experts to include Buruli ulcer in the review and subsequent planning activities. The NTD programmes in both countries are separate from leprosy but were represented during stakeholder meetings. In Uganda, action planning happened well after the roadmap development, involving a separate meeting of stakeholders, whereas in Nigeria the two processes were combined.

Thoughts and conclusions

Partner countries have generally received the GPZL country model well. The major plus has been its ability to bring partners in-country around a common focus. It however takes great effort to engage broad sectoral stakeholders around the table, and ongoing work is almost always necessary after the stakeholder meeting. Critical success factors include:

• Support by various technical experts as consultants.
• Well-designed preparatory phases, which strengthen the entire review process.
• Availability of prior validated data.
• Appointment and engagement of a core group of stakeholders which should subsequently transition into a National Partnership for Zero Leprosy.

In terms of opportunities for improvement, Dr Quao proposed:

• Greater clarity on what happens after the action plan is adopted (for example, monitoring and evaluation processes, and technical support).
• More active exploration of opportunities for integration with other skin NTDs, along with evaluation of the challenges with some integration models such as between TB and leprosy.
• Addressing imbalances in domestic resource mobilisation), noting that Governments normally fund infrastructure and HR costs, but other activities are still largely partner-driven.
• Closer attention to the involvement of organisations of persons affected by leprosy.