(LML) Human rights of LL patients

Leprosy Mailing List – July 1,  2019

Ref.:   (LML)   Human rights of LL patients

From:  Joel Almeida, London and Mumbai

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Dear Pieter,

The human rights of people affected include the right to competent case management. What would they demand if they were equipped with relevant scientific knowledge and skills?

The risk of recurrence after MDT, with consequent deterioration in nerve function, is greatest among LL patients. LL disease often is related to genetically-determined and persistent anergy. Therefore, in endemic areas, anti-microbial chemoprophylaxis for LL patients after fixed-duration MDT is a key part of competent case management. That protects them against the ravages of the bacilli.

LL patients have an important role in suppressing the bacilli during and after MDT. They are not just at the front-lines of the battle against the bacilli. They ARE the front-line of the battle. This is a socially significant role they play in endemic areas. They can play this role very effectively once we assist them by providing post-MDT chemoprophylaxis. Therefore, they deserve not only post-MDT chemoprophylaxis but also some compensation for their important role. We could assist even more LL patients, with the continued help of governments and NGOs, to achieve the standard of living described in Article 25(1) of the Universal Declaration of Human Rights: "A standard of living adequate for the health and well-being of them and their family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond their control."

Unfortunately, too many LL patients after MDT currently can still be found homeless and hungry on the urban pavements of endemic areas. This harms not just them, but all of society. That's because they remain unprotected against re-infection and further nerve damage, while - too often - being forced to act unknowingly as sources of concentrated viable bacilli.(1, 2) That is not their fault, it is rather a gap in our system. The more clearly we understand the underlying biology, and the important role of LL patients in society, the more effectively we can close the gap while helping them to achieve their legitimate expectations.

This documentary reveals some perspectives of patients:

https://www.aljazeera.com/programmes/lifelines/2014/04/ancient-enemy-2014429135148438678.html

The persons at 25m23s and 32m10s simply and powerfully summarise their predicament. 

Persons affected by the disease are also often vocal in demanding better prevention of nerve damage and interruption of transmission. For example, see the same documentary at 45m26s.

 

Persons affected previously had no option but to besiege parliament, civil rights organisations, the courts and the media before we started questioning and revising our practices. That need not remain the case. We can keep making improvements even without intervention by the courts. As discussed in previous contributions here, the evidence indicates that recurrence (endogenous relapse or exogenous re-infection) among LL patients after fixed-duration MDT has been important in keeping the endemic alive. Shandong avoided that mistake by providing prolonged anti-microbial protection to LL patients after the usual duration of MDT. That enabled Shandong to achieve near-zero transmission.

We can match that achievement by providing monthly post-MDT chemoprophylaxis to LL patients. Post-MDT chemoprophylaxis not only protects LL patients from further ravages of the bacilli, but also helps interrupt transmission at the main remaining source of concentrated viable bacilli.

Joel Almeida

References

1) Rao PS, Mozhi NM, Thomas MV. Leprosy affected beggars as a hidden source for transmission of leprosy. Indian J Med Res. 2000 Aug;112:52-5.

2) Davey TF, Rees RJ. The nasal dicharge in leprosy: clinical and bacteriological aspects. Lepr Rev. 1974 Jun;45(2):121-34.

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