Annual State Leprosy Officers Conference

It is a pleasure to be among so many individuals who are working day in and day out for a leprosy-free India.

As you are all aware, NLEP conducted a mid-term evaluation of its 12th Five Year Plan with the support of the WHO, and I had a chance to read the report at the draft stage. I admire the Indian government’s strong leadership and contribution throughout the evaluation process. And I welcome the government’s determination in making this critical opportunity to improve on the program’s efficacy.

At this conference, there will be a session dedicated to reviewing the recommendations made in the report and discussing concrete measures that must be taken in order to achieve leprosy elimination in 100% of districts by the end of 2017.

In December of 2005, India achieved elimination of leprosy as a public health problem at the national level. There is no doubt that this great challenge was achieved in part of your relentless effort and dedication to save as many people as possible from the suffering caused by leprosy.

However, circumstances surrounding the disease have changed over the decade and leprosy control seems to have lost its momentum. Thus we have seen the stagnation of annual case detection at around 120,000 for quite some time.

As WHO Ambassador for Leprosy Elimination, I travel to remote islands and mountainous regions around the world to deepen understanding of the circumstances facing people affected by leprosy. Most often, these areas are where I find people who have not received treatment for leprosy. Many of them have become disabled as a result. The trend of untreated cases is also seen in areas where there is frequent movement of human populations, such as border areas and urban slums. Furthermore, there are individuals who stay in their homes and do not come forward to be treated from fear of stigma and discrimination.

The situation in India follows a similar trend and prevalence of the disease tends to be high among underserved populations living in remote areas, border areas, and urban slums. It may be difficult to reach people in these areas, but if they are overlooked, the disease will progress and cause disability. This is the danger of leprosy. In India, it is believed that there are 300,000 individuals who now live with a disability due to leprosy.

Furthermore, my second concern is that we are seeing disability among children as well. When I was visiting an island in another country, I encountered a four year old girl who had leprosy. She was luckily diagnosed and treated early by a highly motivated nurse who went out of her way to make regular home visits to check on patients’ families. And so she was cured before the onset of any visible disability. It frightens me to think about how her life would have been negatively affected had she been left undiscovered and untreated.

Here in India, I have met with children who had become disabled due to leprosy. My heart aches every time I see such cases. If children are contracting leprosy and not being discovered until they develop permanent disability, I am afraid it is a sign that leprosy services in these communities are not functioning at full capability.

The big question then, is how do we improve leprosy services to ensure that it reaches people who need it most? In such a diverse country, circumstances are quite different across states and districts.

The immediate task will be to identify problematic issues in your state and compile an overarching action plan which includes clear targets for each district. Furthermore, it will be necessary to identify problem districts and direct the DLOs in those districts to compile special action plans that incorporate innovative initiatives that will tap into available resources for maximum results.

In the districts where early detection and treatment are being conducted successfully–in other words, districts reporting a decrease in new case numbers as well as numbers of grade 2 disability—please commend your DLOs for their leadership and encourage them to further sustain their services through collaboration with various stakeholders.

Finally, when considering the medium- to long-term sustainability and improvement of the leprosy program, I would like to ask that we harness the potential of NGOs, especially people affected by leprosy, by increasing their involvement in the leprosy control program. Greater and effective involvement of other community stakeholders such as ASHA (Accredited Social Health Activists) will also help to increase coverage and drive early detection and treatment. The same goes for collaboration with health, medical, and training institutions, as well as partner organizations such as ILEP and SILF.  

As you all know, the causes of the problems of leprosy are not just its debilitating effects but the prejudice and discrimination that it evokes from society as a result. Please remember that lowering new patient numbers and achieving early diagnosis and treatment does not just lead to lower case numbers, but to fewer individuals who will have to suffer from the prejudice and discrimination due to leprosy.

Now is the time for each of us to renew our commitments and work together to reach leprosy elimination in 100% of the districts by the end of 2017 and help save as many people as possible from the suffering caused by leprosy.