It would appear that the Government is getting serious about eliminating leprosy. First, there was a strong statement by Prime Minister Narendra Modi on January 30, calling for an end to the stigma and discrimination that those afflicted with leprosy often face. Then Finance Minister Arun Jaitley in his Budget speech said the government was hoping to eliminate leprosy by 2018. The new Health Policy announced subsequently also included the additional target of bringing down leprosy-related grade II disabilities to less than one in a million, by 2020.
However, the Policy fails to take into cognizance the enormous hurdles in implementation that the country faces. In fact, India declared as long ago as 2005 that it had eliminated leprosy as a public health concern. But by the government’s own admission, an intensive ‘seek and treat’ campaign threw up as many as 34,000 unreported cases last year.
It is now said that India alone accounts for more than 60 per cent of all new cases worldwide.
To actively overhaul this abysmal state of affairs, it is imperative to critically review implementation strategies. One of the major reasons for the persistence of unreported or ‘hidden’ cases is because set targets put pressure on those doing the reporting. As a result, large numbers remain in the shadows.
Moreover, the government’s programme machinery is ill equipped to effectively meet challenges. For community health workers, who are engaged in door-to-door identification, leprosy is only one of several responsibilities. The appointment of local leprosy officers is often delayed. It is my understanding that the post of District Leprosy Officer has been lying vacant in many districts across the country for years.
Moreover, primary health care doctors aren’t sufficiently trained to identify and treat leprosy even when treatment is available. The dismantling of the earlier vertical leprosy eradication program and its integration into the general public health services has further diluted the expertise available on the ground.
The truth, which is well worth repeating, is that leprosy is treatable at all stages. But this knowledge is not widespread. People widely believe that leprosy is highly contagious, incurable and even hereditary. No wonder the stigma attached to it is so great.
Clearly, the success of the government’s programme will critically depend on its success in reducing this social stigma. Nothing short of a nationwide campaign to create public awareness, along the lines of the one against TB in the 1980s, will bring about change. Eminent and influential people need to help bring about this behavioural change. Like Swachh Bharat, prime minister Modi needs to champion the eradication of leprosy.
Mr Modi’s message was a good start – the momentum must be maintained. Parliamentarians can play an important role in this. Not only can they raise awareness among the public, but they can also propel changes in the legal and policy framework that would ensure a non-discriminatory environment for those affected by leprosy.
In 2012, under my convenorship, an informal Forum of Parliamentarians to free India of leprosy was started. Today more than 65 MPs have signed up to assist us in this work.
I have long argued that health be viewed through the lens of wellness. Unfortunately, in India we still focus on illness and treatment. The Ministry of Health aims at identifying and treating the disease only. Instead, a holistic approach is needed, which includes the social and economic integration of those who have been cured.
I have in the course of visits to lepers’ colonies, seen the abject poverty and exclusion of leprosy-affected people who live in isolated and ignored conditions. Greater efforts are needed to help these marginalized people to integrate into society and regain their dignity.
In this context, the work of some NGOs who work in this area is laudable. Among them, the Sasakawa-India Leprosy Foundation (S-ILF), a registered charitable Indian trust whose parent body is the Japanese Nippon Foundation, is doing commendable work in providing opportunities for social and economic integration of those cured by the disease and their families.
Today, many national and state level welfare schemes exist for which the leprosy-affected are eligible. Unfortunately, the schemes hardly target those most in need of them.
India is signatory to the UN convention which recognizes discrimination against those affected by leprosy as a violation of human rights. Certainly, India has done some commendable work in this area. But it now needs to step up on the integration and acceptance of those who have been affected by this curable disease.