Leprosy, also called Hansen Disease, continues to be a major public health risk in India. A complex and contagious disease it causes severe chronic, infections. It primarily affects the skin, mucous membranes, nerve damage and discoloration as well as lumps on the skin and, in severe cases, disfigurement, deformities and physical disabilities if not treated on time.
Annually, it is estimated that Leprosy affects approximately 150,000 people. The numbers could be more since many regions especially in rural areas sentinel surveillance for Leprosy has not been done so the overall case load is not available in these regions. Globally, India is therefore responsible for 58% burden of leprosy. About 10% of new infections are found in children.
The highest number of Leprosy cases is reported in states like UP, Bihar, Orissa, West Bengal and Madhya Pradesh. However in States like Jharkhand and Chhattisgarh, it has been found that many patients are undiagnosed especially those living in rural areas. Due to which they succumb to the disease.
Unlike other communicable diseases like malaria and dengue, Leprosy’s effects usually last a lifetime and can be life threatening.
However, if the patient is diagnosed at an early stage, the symptoms can be identified and proper treatment can be given, reducing the risk of complications. But due to low awareness and poor access to medicine and treatment, many families are unable to get diagnosed on time, which contributes to the rise of communicable diseases like leprosy.
The biggest challenge however is the social stigma and ostracism faced by patients affected by Leprosy.
There are many misconceptions such as the methods of transmission of the disease, and treatment. Primarily there is a perception and belief in society that this disease occurs because of some wrongdoing. As a result, both families and society ostracize those who are infected with leprosy. Many often patients do not get proper treatment either because in many areas they are treated as untouchable or/and are not provided medical care.
To eliminate this chronic infectious disease, the government launched the National Leprosy Eradication Programme in 2005, which helped reduce the caseload. The states which were able to reduce the prevalence of leprosy case were Tamil Nadu, Pondicherry, Maharashtra, Karnataka and Gujarat.
However, due to 16% decline in funding for leprosy eradication programme, there was a 36% increase in Leprosy cases across the country. None of the state provided proper care for these afflicted people.
To address the exiting gaps, the Indian Council of Medical Research (ICMR) is working on creating better understanding of leprosy by carrying out studies. It is essential to create current and future intervention strategies to not only reduce the number of cases through early detection and adequate treatment and care but also overall decrease the disease burden of Leprosy in the country.
The other need is to provide appropriate drug regimens to ensure comprehensive medical treatment for infected patients.
Also, the emergence of drug resistance is also a cause for concern since it poses a serious threat for those who are infected with Leprosy, especially in areas where there has been a decline in the disease prevalence. Therefore Intervention strategies are needed for identifying drug resistance which often is life threatening to prevent and control the disease.
National Jalma Institute for Leprosy & other mycobacterial diseases, Agra, an arm of ICMR, has also done Studies on surgical management of leprosy associated problems which focuses on prevention and correction of deformities as well as chronic problems like plantar ulcers which occurs due to Leprosy infection.
The other major focus was on developing technologies for diagnosis, which includes development of probes, and in-situ methods for improving the histological diagnosis. These will help in identifying the overall caseload as well as the extent of the disease across all states.
Overall, in order to contain the disease and to sustain the decline in the number of Leprosy cases in endemic areas, it is imperative to monitor the disease and the quality of care especially in vulnerable setting like rural areas.
Apart from providing appropriate health care services and treatment, communication with the public about the causality of the illness and the methods of how to get themselves diagnosed and treated. If local communities are engaged and made aware about the disease and the preventive methods, not only will they learn the fundamentals of the disease but such measures will also help end discrimination and stigma, which patients infected with Leprosy repeatedly face at home and the community.
However, if Leprosy is to be eliminated, the government needs to reach the unreached and marginalized groups. For every person to access health care and treatment for diseases like Leprosy, it is imperative that the government undertakes sentinel surveillance to identify the overall disease burden and the number of people afflicted by Leprosy and the quality of care they are receiving. This is required because in multiple rural areas, currently there is limited data on Leprosy since no studies have been undertaken to identify the disease burden. Many families therefore do not have access to diagnosis, treatment and care. Many succumb due to lack of health care and treatment.
Besides, financial challenges also prevent people from getting treatment and care. Since many are impoverished, families are unable to get treatment.
Therefore, it is mandatory that States need to provided adequate financial and health care support such as medical insurance and improved health facilities and care to the public so that all patients especially the marginalized and unreached get appropriate care and treatment.
Only if these crucial steps are taken across all States, and the Centre, Leprosy can be eliminated from India and many lives can be saved from this life threatening non-communicable disease.
(Mohuya Chaudhuri is a senior journalist and research)