During 2019 and 2020, the World Health Organization’s (WHO) Global Leprosy Strategy 2021–2030 “Towards zero leprosy” was developed. The core of the strategy is the interruption of transmission and the elimination of disease. Meanwhile, the COVID-19 pandemic seems to overshadow all other health problems, with scientists predominantly working on vaccines and cures for the virus.

On the occasion of World Leprosy Day on January 30 we talked to Dr Vivek V. Pai, a longtime expert on leprosy. He is the Director of the Bombay Leprosy Project and is fighting to keep leprosy on the agenda while drawing attention to the effects of this devastating disease.

Dr Pai, how many people are suffering from leprosy in India?

In India and the rest of the world, there has been a tremendous decline in the number of leprosy patients over the past four decades. However, one of the major challenges faced by India is the continued occurrence of new leprosy cases, evidenced by almost a static new case detection rate (NCDR) over the past decade. According to the report of the national sample survey and situational analysis done in 2015 by the National Leprosy Eradication programme (NLEP) India, the major issues to be addressed by the program were:

• delay in case detection,
• hidden caseloads,
• low awareness regarding leprosy in the community and
• the lack of quality monitoring.

These effects can be evidenced by the WHO’s weekly epidemiological report of 2019, which mentions that out of 202,488 new cases reported globally, 114,451 (57%) were contributed by India. In addition, in India, there are more than 3 million people with leprosy deformities needing attention and care for lifelong rehabilitation services.

The WHO has drawn up a strategical road map from the year 2021 to 2030, focussing on a “zero leprosy” target. In 2020, although the prevalence of leprosy has gone down to 0.22 / 10,000 worldwide and to 0.66 /10,000 population in India, a total number of 202,488 new leprosy cases including 14,981 child leprosy cases were detected in the world.

India is still housing 114,451 (57%) of the new cases of the world. These data clearly indicate that despite the continuation of effective chemotherapeutic measures with multidrug therapy (MDT) for more than 4 decades, the transmission of the disease is continuing in the community. Leprosy being a chronic disease with a known long period of incubation (up to 20 years and more), a total elimination programme with a “zero leprosy” target may be too optimistic.

In 2020, the National Leprosy Eradication programme (NLEP) has revised its goals as follows and set annual targets:

1. To reduce the prevalence rate to less than 1/10,000 population.
2. To reduce grade II disability <1% among new cases at the national level.
3. To reduce grade II disability cases <1 case per million population at the national level.
4. Zero disabilities among new paediatric cases.
5. Zero stigma and discrimination against persons affected by leprosy.

The key strategy to break the chain of transmission is to detect early the infectious type of leprosy cases, which is more difficult and challenging in the integrated setting.

Can you describe how leprosy damages the health, existence and prospects of those affected?

Even after medical treatment to cure the disease, many leprosy patients are left with visible deformities in/on the hands, feet and eyes, with wounds in the skin and amputated limbs. These patients require sustained disability care and services by way of physiotherapy and protective aids and appliances such as splints and special (i.e. micro-cellular rubber (MCR)) footwear to overcome the effects of disabilities and to prevent further worsening of the disabilities.

During and also after treatment some of the patients suffer from recurrent or chronic erythema nodosum leprosum (ENL) reaction/neuritis. This is an immune-based reaction which is extremely painful and debilitating, affecting the quality of life including the livelihood. These patients need additional medical management along with supportive measures to control the reaction and prevent the morbidity arising out of the disease in the community. Moreover, the deep-rooted stigma of leprosy still exists in the communities. It has been an underlying cause of social inequities faced by the people affected with leprosy, which in turn has been threatening their health, existence, prospects and livelihood.

What is done with regard to prevention, diagnosis, treatment and support – both physically and mentally?

Clinical diagnosis for identifying the cardinal signs remains the mainstay and is supported by skin smear. A skin test called skin smear is the only important tool to confirm and diagnose persons with the infectious type of leprosy. Upon confirmation of the diagnosis, the patients are started on WHO multidrug therapy blister-calendar packs for 6 months in paucibacillary (tuberculoid) leprosy and for 12 months in multibacillary leprosy. These drugs are provided free of cost by the WHO and the government.

Counselling, educating and reassurance of the patients on curing of the disease plays an important role to make them aware of the disease, of treatment adherence and compliance for completion of treatment. It underlines the importance of reporting back to the referral centres or clinics if there is aggravation of the disease or nerve pain or signs of nerve function impairment. This should happen early enough to get the condition examined and confirmed for reaction/neuritis, so that necessary treatment interventions can be started timely.

It is also important that post completion of treatment (i.e. released from treatment (RFT)), patients are to be followed up for identifying clinical events like reactions, nerve damage, disability and relapses of the disease as part of surveillance measures. For prevention of the disease, examination of all household contacts is done, and eligible contacts are given a single dose of rifampicin (SDR) chemoprophylaxis and are being observed.

How does the COVID-19 pandemic affect people diagnosed with leprosy?

The COVID-19 pandemic has impacted all health programs, and leprosy is no exception. The reallocation of staff and resources to limit the pandemic and the travel restrictions imposed have definitely affected the leprosy program. Nonetheless, efforts are made to reorient the leprosy program for active case detection and surveillance including drug delivery to patients and to overcome these temporary hardships to reach the desired goal of leprosy-free India. New case detection has dropped, while interruption of the treatment and follow-up,, compliance with treatment, identification of clinical problems and their management, as well as community programmes are all affected.

In the current situation, what is done to implement the WHO strategy of “zero leprosy”?

The present global WHO strategy for 2021–2030 mentions that it plans to implement integrated, country-owned zero leprosy roadmaps for all endemic countries. This provides an opportunity for countries like India to choose strategies and remedies best required for it.

This WHO strategy, which was developed through a consultative process with all major stakeholders, reflects these epidemiological changes. Whereas previous strategies focused on the “elimination of leprosy as a public health problem” (defined as less than one case on treatment per 10,000 population), the new strategy focuses on interrupting transmission and achieving zero local cases. In doing so, the strategy aims to motivate high-burden countries like India and Brazil to accelerate activities while compelling low-burden countries to complete the unfinished task of making leprosy history.

Thank you very much for the interview and your insight.