(LML) India's Supreme Court re leprosy elimination

Leprosy Mailing List – September 17,  2018

Ref.:   (LML)  India's Supreme Court re leprosy elimination

From:  Joel Almeida, Mumbai and London

---

Dear Pieter,

 

The underestimation of cases of leprosy and the declaration of elimination of leprosy has resulted in the integration of leprosy in general health services thereby leading to diversion of funds which would have otherwise been dedicated to eliminating leprosy," from Supreme Court of India judgment

 

The SC has ordered specific measures to help end discrimination and improve services. The Indian justice system has proved to be a strong defender of the human rights of populations at risk of leprosy, and those disfigured by leprosy.

 

Congratulations to the citizens and civil society groups who brought cases before the SC and all those who helped by working behind the scenes.

 

Lack of sufficient funding leads to too few skilled and competent personnel. This opens the door to avoidable disfigurement and stigma among those who develop leprosy.

 

It might help to:

 

1. Keep correcting exaggerated claims or over-optimistic predictions, while advocating for vastly expanded funding for all streams of leprosy work (including improved front-line services, research and better inclusive opportunities for people disfigured by leprosy).

 

2. Fund periodic sample surveys using skilled personnel, so that we have a reasonably well-informed and up-to-date view of the incidence rate of leprosy and disabilities attributable to leprosy, respectively. The Supreme Court ordered that the previously concealed national sample survey of leprosy should be brought into the public domain.

 

3. Fund population-based demonstration projects that measure the impact of the best tools and practices currently available on the incidence rate of disease and disability respectively. Without measures of impact, we keep walking blindfolded. These large projects can also serve as field testing centres for trials of new technology in the big endemic countries.

 

4. Fund well-documented demonstration projects to try and eradicate M. leprae from a few small islands. Lessons will become available one way or another.

 

5. Draw in more young talent of increasing calibre. Stop pretending or proclaiming that M. leprae are vanishing.

 

6. Keep open the pipeline of new discoveries.

 

7. Insist on normal scientific standards and open scientific scrutiny in the formulation of policy, instead of the closed-door committee process that has proved unreliable and counter-productive so far.

 

It would be good to build on this landmark judgment. Instead of persisting with past errors, we could learn from disease control programmes that have succeeded to a greater extent, in one way or another. There are components that leprosy work has conspicuously lacked. Successful programmes have them. We need to be open to learning and improving, so that we can create a better future for the vulnerable people who trust us.

 

Joel Almeida

---

LML - S Deepak, B Naafs, S Noto and P Schreuder

LML blog link: http://leprosymailinglist.blogspot.it/

Contact: Dr Pieter Schreuder << editorlml@gmail.com