Of the 158 patients undergoing treatment for leprosy in the period 2012–2017, 22 (13.9%) were using substitutive treatment for leprosy and presented criteria to enter this study. Adverse reactions were more frequent in women (59.1%), above 45 years age and during second month of treatment. Dapsone was the most frequently implied drug (86.4%), and hemolytic anemia was the main reaction (72.7%).

Severe adverse reaction to dapsone is common in MDT, mainly due to hemolytic anemia.

Seventy-two semi-structured interviews and five Focus Group Discussions (FGDs) were conducted in India, Nepal and Indonesia. The study population consisted of i) index patients, ii) contacts, iii) community members and iv) health professionals. The participants were selected purposively. A team of four social scientists analysed the data using a thematic analysis.

The participants in this study were mostly positive and sometimes very positive about the possibility to prevent leprosy in close contacts through a single dose of rifampicin. Most respondents reported that there were no changes in their views towards leprosy or people affected by leprosy after the intervention. The study revealed that the incorrect health information that was retained and the wish of some people affected to conceal the illness poses challenges for a PEP programme.

The LPEP programme was perceived positively and no negative effects were reported. In this analysis, PEP did not appear to have an effect on the way leprosy or people affected by leprosy were perceived. More research is needed on providing health information that is accurate and understandable for contacts, and on approaches in which disclosure of the index patient is not required.

A survey was conducted using multistage cluster random sampling in eight districts of India; four in U.P. (high endemic) and four in Haryana (low endemic). 804,534 people were examined using physical examination. All the cases suspected by field staff were examined by PHC medical officers or district medical/leprosy officer to confirm the diagnosis for treatment at a nearby health facility. Prevalence per 100,000 was estimated and 𝜒² test of significance was used to compare proportions.

This survey suggested that the prevalence of disability in India was 31.9 per 100,000 population. This was 47.3 (95% CI: 42.0–52.7) per 100,000 population in Uttar Pradesh and 16.8 per 100,000 population (95% CI: 13.6–20.1) in Haryana. The percentage of disabled among new active leprosy cases was found to be 15.8%; 17.7% in Haryana and 15.2% in Uttar Pradesh.

The percentage of disabled among new active cases appeared to increase with age (Figure 1), touching zero level at young age of under 10 years and then slowly increasing to a maximum of 34.4% in ages of beyond 60 years; 24% of males with active leprosy were disabled, significantly higher (𝜒² = 18.2, P < 0.0001) than 7.0% among females, however, this was not significantly different in rural compared to urban areas (18.3% vs. 12.0%, 𝜒² = 2.3, P = 0.13). The Grade 2 disability rate alone among new leprosy cases was found to be much higher 10.7% (38/355) than 1.8% as reported in the registered data of India 2008–2009.

The study suggests that the prevalence of disability is 31.9 per 100,000 population (95% CI: 27.7–36.3) across the two states together and the percentage of disabled among new active leprosy cases was 15.8%. Although Grade 1 disability is not reported in the programme routinely, the rate of new cases with Grade 2 disability found in this survey suggests that the actual rates may be as much as 5.9 to 14.5 times the figure reported in Government data.

From 2015 onwards, the International Nepal Fellowship (INF) has carried out a research project about current leprosy delays within its working area, the West and the Mid-West Development Regions of Nepal. In one of the initiatives within the project, a total of 100 newly diagnosed leprosy cases from four areas were met with and interviewed at their place of treatment and/or in their communities. Eighty-one out of 99 participants (one reply missing) reported that they had not suspected leprosy before the diagnosis. Not having suspected leprosy, the leprosy stigma was something to grapple with after the diagnosis rather than before. Most did so by concealing the diagnosis. Others before them had done the same.

In this sample, the direct influence of leprosy stigma upon delay in diagnosis was found to be marginal, as most participants had not suspected leprosy ahead of the diagnosis. Indirectly, however, there was and is an influence. Expectations and fear of the leprosy stigma cause those able to conceal the diagnosis to do so and those able to conceal are mainly those with less advanced signs and symptoms of the disease, the majority of present day patients in Nepal. And thus, the traditional image of leprosy as a disease of outstanding deformities is rarely challenged, which in turn means that most new patients do not suspect their condition to be leprosy. Had it been challenged, through better public awareness of the early signs of leprosy, for example, the health-seeking process is likely to have been different.