Dr Ashok Agarwal, Country Director, NLRIF explains that the fear of leprosy needs to be broken. Leprosy bacteria though transmitted through breathing, the infectivity is very low compared to say tuberculosis and nowhere compared to COVID
Leprosy has been affecting the lives of human beings for more than 4000 years; though the stigma and discrimination have decreased over time but is enough to keep many of the affected into hiding, not seeking timely support, resulting in the development of disabilities that often cause life-long suffering. The suffering is not limited to the affected but his family with children finding it difficult to make friends in school, get employed, and married; even in 2022, we can hear this from leprosy affected residing in Delhi, the national capital. It is a poor man’s disease, the voices of the leprosy affected remain feeble and often unheard. There are also around 97 laws in India that are discriminatory towards the leprosy affected.
India continues to get around 110,000 (60 per cent of global) new cases of leprosy every year for the last few years; of course, the disruptive COVID pandemic has also disrupted all public health programmes including leprosy with around 40 per cent of the cases not detected in 2020 and 2021. Around 7.6 per cent of the new cases were detected with a disability which could have been prevented if detected early. Besides individuals reporting late to the health system for treatment due to unawareness and associated stigma, they are often missed by the medical officers due to their limited knowledge and skill on leprosy, cases being less many of the young graduates may not have seen a case of leprosy during their training. The knowledge and skill of managing leprosy across the country are also dwindling with the retirement of old leprosy staff. With the Indian leprosy services, integrated into the General Health Services (GHS), in a phased manner, in different districts, from 2001 to 2004; there is a need for the general health care staff to develop the knowledge and skill of leprosy.
The Government of India through its able officers at the Central Leprosy Division, states and districts have resolved to significantly reduce the transmission of leprosy cases by 2030 in line with the global call to end leprosy; with around 60 per cent of the global new cases, India has a bigger responsibility. The good news is now we have the means to do it! There is an effective preventive therapy – a single dose of a medicine called Rifampicin can reduce the occurrence of leprosy amongst contacts of leprosy cases by almost 57 per cent. India rolled it out as a national programme in 2018; however the implementation is often marred by the lack of Rifampicin supply, the requirement is small, and the state governments often find it difficult to procure; an effective solution needs to be found. But the medicine is available for purchase in the market and is reasonably priced, around Rs 6/- per capsule. However, the unfortunate part is, that even some private health facilities engaged in treating leprosy do not know about the preventive therapy and fail to promote it to the families and friends of the patients they treat. Since 1983, the government of India has been providing multi-drug therapy free of cost to all leprosy cases, and it cures the person of the infection through a six or 12 months course depending on the type of leprosy.
The fear of leprosy needs to be broken. Leprosy bacteria though transmitted through breathing, the infectivity is very low compared to say tuberculosis and nowhere compared to COVID. The affected person can be diagnosed without any test most of the time through the symptoms and signs of skin patches with loss of sensation. Leprosy infection can be fully cured with MDT. Early diagnosis and treatment of leprosy prevents the occurrence of disability. Reconstructive surgery can be done for the weakness in limbs or eyelids caused by leprosy in some cases. The awareness of leprosy needs to be increased; as the number of new cases decreases it will become more difficult for the health system to detect them, it will be like finding a smaller needle from a larger haystack. Individuals should be able to suspect themselves and seek treatment without any delay. Private health care providers need to be engaged in the early detection, treatment, and prevention of leprosy; often they are first consulted by many. The engagement of quacks is also important; many of them are very popular, particularly in rural India. The prevalent stigma and discrimination need to be broken by demonstrated actions like making the affected more visible, providing them important platforms, imagine the positive impact of a prominent public figure publicly embracing a person with a disability due to leprosy. The discriminatory laws should be proactively removed and it will be a big achievement to reckon in the 75th year of Indian Independence. The physical, social, and mental suffering of persons with disability due to leprosy should be effectively addressed; there is a need to have a robust number of persons with disability, and mapping them through geo-spatial technology may help in the delivery of services. Working for leprosy affected will also be a true homage to the work of our Father of the Nation – The Mahatma.