Tuesday, December 27, 2011

Give the leprosy workers a voice

Leprosy Mailing List – December 26th, 2011
Ref.:    Give the leprosy workers a voice
From: P A M Schreuder, Maastricht, The Netherlands

Dear Salvatore,
It is Christmas time. Let’s us reconsider our differences. The final goal of everyone is a world without leprosy.  The first step is elimination, the absence of a disease from an area; the second step will be eradication, the disappearance of a disease from the entire world (like what happened with smallpox).  There are not that many tools, interventions, available to reach that final goal.  Too little is known about transmission and the step from contamination to infection to disease.  Yes, leprosy has (almost) disappeared from the developed world.  Why transmission had halted we do not know, but it is assumed that improved living conditions (hygiene, living space, nutrition, etc.) have played an important role (but what and how, we do not know).  BCG is widely applied in the world and certainly has caused a dent in the incidence of leprosy.  Prophylactic treatment of contacts is still in the research stage, but very promising.  There are no tests yet which can predict if a person infected will actually develop the disease.  Everybody agrees with the present strategy of early (soon after the appearance of the disease) diagnosis and prompt treatment with MDT.  If this indeed will interrupt the transmission cycle is not clear.  To be able to apply a strategy, a well-organized basic health service, supported by a well-defined system of training, supervision and referral services, is needed.  We do not only want a patient to become rapidly non-infectious, we also want the patient to be free and stayed free of nerve function impairments.  And if impairments develop to prevent further worsening, and further disabilities and handicaps.  The recent WHO Global Strategies spell this out very clearly (WHO Global Strategy for Further Reducing the Leprosy Burden and Sustaining Leprosy Control Activities 2006 – 2010 and the Enhanced Global Strategy for Further Reducing the Disease Burden due to Leprosy 2011 – 2015).
The WHO elimination policy, although based on a faulty definition and lacking any scientific justification, has been highly successful in gathering political support and organizing leprosy control programmes in many countries.  The policy based on early case finding through active and passive case detection, MDT treatment, and organizing and integrating the basic health services resulted in many new patients being diagnosed and a rapid decline in known prevalence.  If the leprosy countries would implement WHO Global Strategies, including POD and setting up rehabilitation services, and if new approaches for leprosy control in less endemic areas, would be developed, the leprosy control situation would continue to improve.
However, as soon as the WHO declared its elimination policy it became hijacked by health authorities and politicians.  Its target “setting of a prevalence rate of less than 1 per 10,000” suggested that by reaching this target the leprosy reproduction rate would become less than 1 and as such leprosy would further decline and eventually disappear from an area.  Once more, there was no scientific support for these suppositions and the “elimination of leprosy”, the disappearance of leprosy from previously endemic areas, has not materialized so far.  What is even more, if the original definition of a leprosy case, the duration of treatment and the duration on the patient register had not changed, than many countries, where leprosy has been so-called eliminated, would not even have reached a target of less than 1 per 10,000  by now.  Changes of case definitions, ascertainment procedures, and diagnostic and registration conventions have impacted more on reductions in prevalence (1) than a decline in incidence in many countries.
Because the quality and coverage of control programmes had increased remarkably, many new patients were diagnosed and successfully completed treatment.  Still the postulated decline in detection rates in many endemic countries did not materialize even after the so-called elimination target was reached.  Even though new leprosy patients continued to present themselves, some countries started to dismantle the leprosy services leading to extra suffering of patients (late diagnosis, difficulties in finding treatment).  Why should we be apologetic about this?
Instead of accepting that the present policy did not necessarily resulted in a rapid decline in detection rates and that the target setting of a prevalence rate of 1 per 10,000 did not show to reflect the real leprosy situation in the field, not the target and prevalence were discarded but the detection figures and the leprosy workers were made the culprit.  Administrative steps were taken in several endemic countries to hide the real situation that many more new patients were found than was politically convenient.  Many authors (and many leprosy workers), like Paul Fine in Leprosy Review, have pointed this out, but with as only result that the proponents of this misguided target setting have become even more intransigent.  The video message at the Brazilian Leprosy Congress is a prime example of this, blaming the highly dedicated and hardworking leprosy workers, instead of realizing that the world has gone on and that WHO has set new policies and strategies.  That is why we want to pay so much attention to this in the LML.
Yours sincerely,

  1. Anjan Gosh. A Health Policy Report “How could changes of case definitions, ascertainment procedures, and diagnostic and registration conventions have impacted on reductions in the prevalence of leprosy in India, reported over the last decade (taking the state of Jharkland as a case study)? LSHTM, 2008

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