ILEP outlined its current strategies in connection with the main themes of the WHO NTDs Roadmap and urged the inclusion of leprosy among NTDs that are the subject of current WHO studies regarding the effects of the Covid pandemic
ILEP urged repeal of the discriminatory marriage law, with reference to Nepal’s obligations under the CRPD Convention and other relevant factors
The annual conference of the Neglected Tropical Disease NGO Network (NNN) was held from 13-15 September in a hybrid format: face-to-face in Kathmandu, Nepal, and online. The Leprosy Mission Nepal was the official host of the Conference.
There was strong representation from the leprosy world. More than one-third of the attendees had connections with leprosy organisations, particularly from Nepal and India, including ILEP Member associations and people’s organisations such as IDEA Nepal. Six of the seven ILEP Advisory Panel members were active participants in the Conference and built a strong connection with the IDEA Nepal representatives.
An advocacy event, organised by IDEA Nepal and ILEP Members working in Nepal, was held the day before the Conference. The aim of the event was to raise political and judicial awareness of marriage legislation in Nepal that discriminates against persons affected by leprosy. The audience heard that the law contradicts government statements that leprosy is not to be feared, and it is not in keeping with Nepal’s commitments under the CRPD Convention. Speakers from the Supreme Court, Bar Association and National Human Rights Institution talked about the process for changing the law. There was optimism that this can be accomplished by mid-2023.
130 participants – almost half the in-person delegates – joined the 3-hour leprosy-specific group meeting facilitated by Andie Tucker (GPZL) and Geoff Warne (ILEP). The first half of the meeting covered the challenges and opportunities around integration of leprosy with other NTDs. Break-out groups discussed examples of integration with Skin-NTDs and what had made this integration successful. The second half included presentations and Q&A on the implications for ILEP Members of the forthcoming WHO guidance for countries wishing to assert leprosy elimination (defined as interruption of transmission) and included data from four low-endemic countries demonstrating the application of the elimination framework.
ILEP Member delegates were also very engaged in the Skin NTDs cross-cutting group and the Disease Management Disability and Inclusion (DMDI) cross-cutting group, as well as in the many Conference workshops.
The President of Nepal was the chief guest, thanks to tireless work by Shovakhar Kandel (TLM Nepal) during the weeks leading up to the Conference. Other key speakers during the event included Amar Timalsina (member of the ILEP Advisory Panel) who used the history of IDEA Nepal to demonstrate how people’s organisations have enabled people affected by leprosy to have a clear and powerful voice; and Wim van Brakel (NLR and ILEP Technical Commission) who gave examples of ILEP Member collaboration with government programmes, local universities, and other partners to continue to improve the tools available to combat leprosy. He also spoke about the holistic nature of ILEP’s work, working towards zero transmission, zero disability and zero discrimination, and how ILEP and its Member associations have sought to infuse this holistic approach into the NNN community as a whole.
ILEP was once again a Platinum sponsor of the NNN Conference thanks to financial contributions by The Leprosy Mission, NLR and Effect Hope. One benefit of sponsorship was an allocated display table which was shared with, and very capably managed by, Suzan, Chrysa and Roos from LRI and InfoNTD. This became something of a hub for ILEP Member personnel and others connected to the leprosy world.
The WHO Global Leprosy Programme has published the Global Leprosy Update for 2021 in the Weekly Epidemiological Review and the Global Health Observatory. The reported data shows further progress in spite of the COVID pandemic, whose dampening effects on routine control activities are clearly demonstrated. It is encouraging to see that the number of countries reporting data has increased again (160 in 2019; 127 in 2020 and 143 countries in 2021) and as the DHIS2 reporting platform is more widely used, we may expect that the quality of the data is also improving each year.
The WHO report presents the current situation in detail, through comprehensive Tables and Figures, with additional information in the text about leprosy reactions, relapses, adverse drug reactions and antimicrobial resistance. There is commentary on the effects of COVID-19 and on progress towards interrupting transmission.
The Editorial notes with concern the number of children diagnosed with Grade 2 disability (G2D), and this can be studied in more detail. By region, the number of children with G2D at diagnosis during 2021 is as follows:
| AFR | 262 |
| AMR | 31 |
| EMR | 2 |
| EUR | – |
| SEAR | 62 |
| WPR | 11 |
| Total | 368 |
It is noteworthy that of all children reported with G2D, over 70% were diagnosed in Africa. Looking at the individual country data, there are 7 countries in Africa with 10 or more such cases (Angola, DRC, Ethiopia, Mozambique, Senegal, South Sudan and Uganda). It is important to realise, however, that we do not know the actual total number of new child cases with G2D. India only reported 41 (out of 4107 new child cases) and Indonesia (16 out of 1133), while Brazil reported 29 out of 761 child cases. It is likely, therefore, that the total number of child cases with G2D is considerably higher than that 368 reported in 2021.
Another surprise is that, as shown in Table 1 and Figure 3, AFR has overtaken SEAR for the first time, as the region with the highest number with G2D amongst all new cases. Last year’s Update for the year 2020 showed regional trends over ten years in the numbers of new cases with G2D (Table 2), with a steeply declining trend in SEAR and a slowly increasing trend in AFR. Table 4 in the current paper shows that Mozambique had a very marked increase in G2D numbers in 2021, although this may be mainly a reflection of the 41% increase in the total number of new cases reported in Mozambique since 2019 (2019: 2220; 2020: 2065; 2021: 3135). Such fluctuations may relate to changes in service provision during the pandemic, but may also be linked to better data collection and reporting.
These data should serve as a reminder that intensified efforts are needed in many countries in Africa. It may be that the data point to more activities and better reporting, but it is well-known that issues of infrastructure and capacity-building need much more investment across the continent if we are to reach the targets we have set.
Overall, it is good to note that childhood leprosy is declining globally quite steeply, as shown in Table 2, and that G2D at a global level is also declining gradually to the target of < 1 case per million (Table 1). Table 1 also points out, however, that Africa is well behind other regions in this regard.
Thirty-seven countries reported zero new autochthonous cases of leprosy, while 67 reported zero child cases. This indicates that many countries are well on the way to achieving the new milestones of interruption of transmission and elimination of leprosy disease. In fact, 14 countries have already reported zero new child cases for 5 consecutive years and have therefore met the new milestone for interruption of transmission.
With thanks to Dr Paul Saunderson, ILEP Technical Commission, for this commentary.