The country is engaged in a tough battle to eliminate leprosy. Given that it was all but beaten in 2005 only to raise its head again, the Government needs a new thrust to tackle both the disease as well as stigma around it
Widely appreciated for providing world-class mass transportation infrastructure in the National Capital Region (NCR), the Delhi Metro Rail Corporation (DMRC) has, sadly, turned intolerant to the travelers affected with leprosy.
Issuing a health advisory, the DMRC asked the patients that if they want to use its services, they must carry a certificate confirming that the disease is not contagious. This move has left the Supreme Court fuming, for all the right reasons.
Recently, the apex court rapped the DMRC for its discriminatory attitude towards the community, saying that at a time when it is widely known that leprosy is curable, how could it ask the patients travelling in its trains to carry a certificate stating that the disease is not contagiousIJ
The bench comprising Justices AM Khanwilkar, DY Chandrachud and Chief Justice of India Dipak Misra said that the court does not approve of the DMRC’s stand on leprosy. In the 1960s, even tuberculosis (TB) was considered to be incurable and contagious. But today, there exists no such stigma against TB. Similarly, leprosy is “curable and not contagious”, the court said.
last year, Sunil Kumar Aledia, an activist from the Centre for Holistic Development (CHD) for homeless, had lodged a complaint with the Delhi metro about the advisory posted at one of its stations, asking the commuters suffering from specific diseases, not to travel by the metro.
However, the complaint was thrown into the dustbin as the DMRC, a centre-State-run public transport system, took no action.
Now, the top court has passed directions, asking the DMRC to do away with its advisory. However, it is not just the Delhi metro which has been discriminatory to this community. The Aam Aadmi Party Government in Delhi as also the Modi regime at the Centre have been apathetic to this marginalised and stigmatised population.
While the national Capital is yet to launch a survey to detect hidden leprosy cases to ensure early treatment of the people afflicted with the disease, the Union Government has not even bothered to ensure the passage of the Eliminating Discrimination Against People Affected by leprosy (EDPAl) Bill 2015.
The Bill seeks to scrap several obsolete laws, including the lepers Act, 1898, which discriminates against leprosy patients. The court too had noted that several discriminatory legislation were existing that were enough to stigamise the disease, after an NGO, Vidhi Centre for legal Policy, had filed a Public Interest litigation, seeking elimination of all forms of discrimination against persons suffering from leprosy.
It is disturbing that on the one hand, the Centre has launched the leprosy Case Detection Campaign (lCDC) on a war-footing across States, to detect hidden cases for early treatment. On the other, the Government is yet to repeal several laws, including the The Hindu Marriage Act, 1955, that confers an aggrieved party the right to seek divorce if ether of the spouses is suffering from leprosy.
The NGO was of the view that continued discrimination of lepers who had been cured of the disease was a gross violation of their fundamental rights under Articles 14 (equality), 19 (free speech) and 21 (right to life and liberty) of the Indian Constitution.
leprosy is a mildly infection disease associated with poverty and poor hygiene. It can be cured easily with multi-drug therapy (MDT), a combination of three antibiotics — clofazimine, dapsone and rifampicin.
If left untreated, the disease can cause nerve damage, leading to muscle weakness and atrophy and permanent disabilities.
late treatment of leprosy can lead to permanent disabilities. Currently, some three million people live with disabilities associated with late treatment of leprosy. Activists note that such kind of negative stereotyping will stop more people suffering from the disease from seeking treatment. lack of awareness, myths, socio-cultural beliefs and stigma attached to leprosy continues to take toll on the patients.
little wonder, though India was officially declared to have eliminated leprosy in 2005 — new cases fell to less than one per 10,000 persons, India still accounts for the largest number of leprosy-affected people in the world (58 per cent) with a registered prevalence of 86,319 and 1,25,785 new detected cases.
As per the National leprosy Elimination Programme (NlEP) of the Union Health Ministry, a total 1.27 lakh new cases were detected in 2015-16. Though, overall, new cases have gone down marginally over the past decade — from 139,000 in 2006 to 127,000 in 2015 — the share of grade-II disability among new cases have increased from 3.10 per cent (2010-2011) to 4.51 per cent (2014-2015). This indicates that cases are being detected late in the community and there may be several cases that are lying undetected or even hidden.
What’s disturbing is that India is home to about 800 self-settled leprosy colonies where people do not have access to basic facilities and continue to be seen as outcasts. It’s time for the Government to rethink its strategy. But more than that, political will is needed to ensure that policies are implemented at the right earnest to eliminate the disease while patients are brought in the mainstream of the society.
(The writer is Special Correspondent, The Pioneer)
