WHO Global Leprosy Update for 2020

The ILEP Technical Commission (ITC) has produced a commentary on the recently published Global Leprosy Update for 2020. (WHO, Weekly Epidemiological Record, 2021; 96: 421-444). The authors are Paul Saunderson (ITC), Joseph Chukwu (ITC) and Tom Hambridge (Dept of Public Health, Erasmus MC).

Overview

The most obvious feature is the effect of the COVID-19 pandemic and the consequent reduction in field work, including leprosy case finding and clinic attendance, in most parts of the world.  Reported case numbers are generally reduced by about one third from the previous year. This is highlighted by the steep decline in new cases (and registered prevalence) compared to 2019, particularly in the three countries with the highest endemicity: Brazil, India and Indonesia. In fact, the proportion of new cases coming from these three countries remained more or less the same despite the global decline, contributing to 74% of all new leprosy cases in 2020 vs. 79% in 2019.

In total, 127 (80%) of the 160 countries reporting in the previous year provided data for 2020, but the missing data are mainly in countries with little leprosy; the submission of reports from as many as 80% of endemic countries, including all 23 high priority countries, suggests that the web-based reporting system, linked in many cases to the DHIS2 platform, has performed well in the face of the pandemic and speaks to the efficiency and promise of digital solutions in public health,  even in resource-poor settings around the world.

Other correspondence has indicated similar drops, of around one third, in routine case work in various fields, such as laboratory testing for TB in Europe, yellow fever notifications in Africa, and leishmaniasis case detection globally.

As is briefly described on page 423 of the Update, we should look at 2019 and 2020 as a threshold separating two distinct epidemiological periods for leprosy, given the nature of case detection and the interruption caused by the global pandemic. COVID-19 measures that took priority in recent months, are expected to continue in many countries in the coming years, and there are also renewed efforts towards ending the transmission of leprosy being promoted as part of the new Global Strategy (2021-2030), suggesting that we may never return to the status quo ante.

Priority countries

Tables 3 and 4 present trends in the 23 priority countries.  New case detection (Table 3) dropped in most countries, although DRC, Kiribati, Madagascar, Somalia and Sudan showed modest rises.  All of the priority countries showing modest rises (aside from Kiribati) were in Africa, which perhaps had a later onset of the pandemic and thus less COVID-19 control measures in operation throughout 2020.  As there may have been more disruption from COVID-19 in the first half of 2021 in many endemic countries, the declining trend is likely to continue, but could be mitigated by a gradual return to more normal activities going forward.

New cases reported in Brazil declined by 35%, in India by 43% and in Indonesia by 36% from the 2019 figures. The numbers of new cases with Grade 2 disability (G2D, Table 4) showed almost exactly the same trends, as may be expected.  Angola showed a surprisingly large drop in new cases with G2D.  A minor point is that data for Nigeria are incompletely reported, although the missing information was apparently submitted: New child cases: 87 (MB) + 10 (PB) – total 97 cases; New child cases with G2D: 15 cases; New cases with G2D: 170; Foreign born cases: 11; MB treatment completion: 90.9%; PB treatment completion: 93.4%.

Treatment completion rates: In contrast to the sharp drops in case detection/notification in 2020, it is heartening to note from the report that ‘the rates of completion of treatment for multibacillary (MB) and paucibacillary(PB) leprosy were similar to those in 2019’, averaging about 88% for MB and 95% for PB. This could be explained in part by special measures put in place by ILEP members and programme managers in some countries, to help patients continue treatment during lockdown and periods of restricted movement. The idea was, ‘if we cannot go out to detect new cases, we can at least ensure that patients already on treatment remain adherent’. Digital technology (phone calls, SMS and WhatsApp) was deployed to great effect in aid of this endeavour.

Drug-resistant leprosy: page 430 of the Update has a brief paragraph on leprosy drug resistance (AMR), tested in the 16 countries listed in a footnote, of which 6 reported the presence of AMR; Somalia is the only country in AFR on the list. Resistance monitoring should be encouraged in other high endemic areas in AFR, particularly Ethiopia, Mozambique and DRC. Indonesia has implemented leprosy chemoprophylaxis campaigns using SDR-PEP, with no report of resistance to any drugs. Altogether, 67 patients (including 13 new cases) harboured multi-drug resistant strains. This highlights the importance of drug-resistance testing as recommended in the new WHO leprosy (Hansen’s disease) strategy. This takes on added significance with increased coverage of single-dose-rifampicin prophylaxis especially in high burden countries.  More detailed information about the AMR testing that is done would be valuable.

Discriminatory laws against persons affected by leprosy:  Seven countries reported laws discriminating against persons affected by leprosy in their statutes. This is unacceptable in the 21^st century. All are enjoined to work to repeal such laws and indeed report any discriminatory practices against persons affected by leprosy and their families to the UN Special Rapporteur on the Elimination of Discrimination against Persons Affected by Leprosy and their Family Members, or the relevant authorities in the country.

Return to normal activities

ILEP members should be encouraged to help national programs to return to normal activities, with an expected backlog of cases who were not diagnosed in the last 12-18 months. This could be done through coordinated screening of contacts of registered leprosy patients currently receiving MDT, particularly household contacts, and also by directing short term resources towards training of groups such as local volunteers and health extension workers. If implemented successfully in high endemic areas, the backlog should be manageable for field teams to address and we would expect to see a slight peak in overall incidence over the next 3 years from cases who went undetected during periods of health service disruption.

MDT supply should be monitored carefully. In theory, stocks should be adequate if less has been used in the last 12 months, but countries should order new supplies based on 2019 case numbers. Many recently supplied batches of MDT have expiry dates later than Dec. 2023, so will be available for additional new cases during the next 2 years. Nitrosamine impurities in the rifampicin supply caused some disruption towards the end of 2020, but this has now been resolved.

Conclusion

Global health services have been severely tested by the COVID-19 pandemic, both in terms of the additional burden of managing COVID patients and the disruption of almost all other services to some extent.  Leprosy has been no exception.  Leprosy programs have generally been able to provide ‘essential and critical services’, but routine field work was often not possible in some places for some periods.  It is to be hoped that routine activities can be resumed quickly, with increased vigour.

An unfinished business: discrimination in law against persons affected by leprosy and their family members

In October, UN Special Rapporteur Alice Cruz makes her first report to the UN General Assembly. Her topic is the laws, regulations and norms that continue to dehumanise persons affected by leprosy and their family members. She has also produced a brief, 2-page factsheet that covers the main themes of the report

Discriminatory laws – whether actively enforced or not – are deeply offensive. On a personal basis, they rob people affected by leprosy of their dignity and dehumanise them, for example by labelling them ‘lepers’ and calling, in various ways, for their exclusion and segregation. From a national perspective, they contradict the UN Principles and Guidelines that affirm that States should take all measures to abolish discriminatory laws and regulations; several provisions of international human rights law; and pillar 4 of the WHO global leprosy strategy. And yet, the Special Rapporteur, using a wide variety of sources including information supplied by ILEP and ILEP members, has identified at least 130 ongoing discriminatory laws in more than 23 countries.

These discriminatory laws have been put in place since the beginning of the 20^th century. They reflect the idea of contagion – a particular fear of the imperial powers. Although there was never scientific evidence to justify compulsory segregation, whether of children from their parents or of individuals from their families and communities, experts did not abandon the idea until 1948, and some countries continued to enforce segregation for decades after that. Ms Cruz writes: ‘The biomedical concept that affirmed the need for prophylactic segregation continued to influence national legal and regulatory frameworks [which] give legal legitimacy to, and reinforce, structural and interpersonal discrimination on the grounds of leprosy, endorsing and normalizing the dehumanization of persons affected by leprosy and denying them any possibility of enjoying a life with dignity.’

The Special Rapporteur’s report provides considerable detail as to the types of rights that are violated by these discriminatory laws. They include the right to participate in political life, rights of freedom of movement including use of public transport, rights related to marriage, rights of migrants, the right to work (many laws restrict access to certain jobs), and rights to occupy positions of authority. Alongside these denials of rights are the many laws that allow the authorities to forcibly segregate or hospitalise persons affected by leprosy. There are also numerous laws and regulations that seem neutral on the surface but which may be implemented in ways that stigmatise and discriminate.

Laws on countries’ statute books are only part of the problem. The report gives examples of traditional non-written customs and practices, which may exist in many countries, that discriminate against persons affected by leprosy. These are sustained by stereotypes connected with traditional beliefs about leprosy, many of which come from world or local religions.

The Special Rapporteur describes efforts in several countries to persuade governments to amend or repeal discriminatory laws. She especially emphasises work done by the Law Commission, civil society organisations and individuals in India, where there are still 100 discriminatory laws. The experiences in India demonstrate the importance, and the challenges, of using litigation through the courts as a means of fighting formal discrimination.

The report concludes with a wide-ranging series of recommendations for States. Primarily, they stress the need for States to not only repeal discriminatory laws and prohibit discriminatory practices, but also put in place legal frameworks and procedures that recognise persons affected by leprosy as rights holders, enjoying access to entitlements and opportunities on an equal basis with others. These frameworks would include laws to protect the rights of persons affected by leprosy, proper monitoring and complaints processes, education programmes for government employees, and elimination of derogatory language. There are also recommendations targeted at eliminating traditional discriminatory customs and practices, implementing reparation programmes as restorative justice, taking active and positive steps to promote participation of persons affected by leprosy and their family members in all forms of social and economic life, and paying particular attention to the protection of women.

ILEP recommends a close reading of the report, and for it to be used as an impetus for ILEP members, civil society organisations and activists to renew their efforts to rid the world of anti-leprosy discrimination.