Leprosy: Education as first priority

Most people have sometime in their life heard about leprosy; it has been pointed out as a neglected tropical disease and affects populations on verge of poverty, such as India and Cote D Ivory. However, the reality of leprosy does not affect just India, but a large sum of countries in south Asia, Africa, Middle and South Americas.

Leprosy has been out there since the beginning of times and keeps hunting communities worldwide. Furthermore, it is far from being eliminated as suggested by the World Health Assembly in 1991. The article “Leprosy Elimination: A Myth Busted” described recently that almost 10% of new cases diagnosed in an Indian rural terciary hospital were of children under 15 years old.[1] A recent epidemiological report in Brazil revealed a very high detection coefficient for children (almost 7% of the new cases per year) which clearly demonstrates active transmission and failure to recognize contacts at home, school, and work sites.[2]

Recently, a project in Brazil involving a School Hospital and northern communities that live alongside the rivers started active searches for new leprosy cases and household contacts.[3] The numbers are astonishing: 12% of household contacts carried the disease, but were not into treatment or even had knowledge of it prior to the study. And the general information about the disease remains dull, as proved by another study within the same endemic area which showed that 50% of household contacts are still uncertain about the clinical aspects and treatment of leprosy.[4]

That lack of information reaches both patients and physicians as well. Underdiagnosed leprosy is common even into endemic areas as it gets misdiagnosed with other diseases such as psoriasis, pyoderma, angioderma and even vitiligo. It is not uncommon to see patients been clinically diagnosed by leprosy after many years of treatment for mistaken tendinopathy, arthritis, and many other orthopedic or rheumatic diseases.[5] 6.2% of all worldwide new cases found presented with Grade 2 (the highest rate for incapacities outcome) according to WHO Disability Classification[6] in 2012, which implies that those persons with deformities have been passing out bacilli for a long period, and not searching for (or not being well attended to) proper care and treatment. If it was possible to, an active search of these patient's household contacts would certainly reveal a higher number of new cases, and the numbers shall keep rising.

Even when the clinical examination is well conducted, the bitter journey of those in search for the right diagnose does not end well most of the times. There's still the stigma of leprosy hovering around, doesn’t matter if the cure and treatment are well known in the pharmaceutical community and available to all. Also, it doesn’t matter if the site is endemic for leprosy and carries so many cases at large. The general information is what biblical times referred to, and by the 21^st century the fear of the disease is what those people still get. Leprosy stigma is considered one of the greatest obstacles to self-care and eradication of the disease, since it prevents many from seeking help.[7] The bacterial cure through MDT is effective but far from being the total cure for this patient, given all prejudice and social abandonment that comes along. It all relays-once more-into lack of information by the community, governmental health department, and physicians.

Most people we talk to don’t even know that leprosy is contagious; some belive it was eradicated, and (far worse) some belive that leprosariums might be the only way to deal with the ill. Generally people think of leprosy as sin punishment, which only concerns the evil hearted. Never strike to think that there are children affected, that there are good workmen depressed by the incapacities and deformities the Mycobacterium leprae is capable of.

During the last International Leprosy Congress (held in Brussels, 2013) we found ourselves talking to a Brazilian journalist out of the event; she though leprosy was eliminated and did not have a cure. But the real fact is that Brazil is the second country in absolute numbers of new cases! This was a very intelligent and well-read person with no knowledge whatsoever about a very important health matter to her country. And sadly we realized she was not the only one. Leprosy is not into public view such as AIDS or Diabetes. General ignorance about the topic still generates fear and speculates wild stories such as active leprosarium and prejudice. Leprosy is a matter of public health but also public education; it is everyone's obligation to at least know that it is out there to break out prejudice and stigma.