World Leprosy Day – the battle has yet to be won

29 Jan 2010

Paul Chinnock

Source: TropIKA.net

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A nurse in Samoa makes a daily house visit, to clean, treat and dress wounds on the feet and ankles of a leprosy patient. The patient is holding a blister pack containing her treatment – multidrug therapy (MDT) WHO/TDR/Crump.

Leprosy is too often regarded as a disease that is already on the way out. Effective treatment is already available, so it assumed to be “simply” a question of getting this through to those who need it, and that there is no need for further research. The main focus of this year’s World Leprosy Day (31st January) and Leprosy Awareness Week, which follows after it, is on raising funds for providing treatment. This is of course essential; there are still many people requiring care, both those with active disease and those whose infection has been “cured” but who have been left with disabilities. However, there is still a need for leprosy research and awareness of this must also be promoted, especially as such research has been in decline in recent years.

Commenting on international efforts to eliminate leprosy as a public health problem, Professor Diana Lockwood a leading specialist in leprosy based at the London School of Hygiene & Tropical Medicine says, “The only thing that was eliminated was leprosy research!”

So why do we need research and on which specific issues is it required? First, it is important to recognize that the battle against this infectious disease of poverty is by no means over. Most previously highly endemic countries have now reached the point of “elimination”, which is defined as a registered prevalence rate of <1 case per 10,000 population. Nevertheless, according to the World Health Organization [1] registered prevalence of the disease worldwide at the beginning of 2009 was 213,036, and there were 249,007 new cases detected during 2008. More than half of these cases (134,184) were in one country – India. Brazil carries the second-biggest burden – 38,914 cases. Every year some 3,000 patients relapse.

As recently as 2002 the figure for new cases worldwide was 620,638, so the statistics for 2008 do show that progress has been made. During the course of 2009, further successes have been claimed; Nepal for instance has now met the criteria for elimination. (See also TropIKA.net reports on the leprosy situation in Sierra Leone and Uganda.) But against these success stories must be set the experience of, for example, Timor-Leste and other Pacific nations, where the human cost of new leprosy cases is still at levels that, in the 21st century, can only be described as shameful.

Surveillance systems are, of course, very far from perfect and some elimination claims have been contested. Thus, while the government of the Indian state of Maharashtra says that elimination has been achieved, researchers who conducted a house-to-house survey found prevalence rates to be three to nine times greater than the official figures – see TropIKA.net News.

Leprosy is often under-diagnosed. This is particularly the case in women; based on case studies in Indonesia, Nigeria, Nepal and Brazil [2], researchers recently concluded that: “Strong traditions, the low status of women, their limited mobility, illiteracy and poor knowledge of leprosy appeared to be important sociocultural factors explaining why women were under reporting”.

Far too often, when a diagnosis of leprosy is reached, it has come too late – nerve damage has already occurred. (Leprosy treatment can avert disability, but only if it is started in the early stages of the disease).

As WHO says in its conclusion to its August 09 report [1]: “Although significant progress has been made in controlling leprosy and reducing the burden of the disease, much remains to be done in order to sustain the gains made and further reduce the disease burden. Early case-finding and prompt treatment with MDT [multidrug therapy] remain the cornerstone of leprosy control programmes, which needs to be ensured by strengthening integration with general health services”. All this is of course easier said than done and research at the “operational” level is a priority.

Key areas

Research can help find the most effective ways of integrating leprosy programmes into public health services, moving away from the traditional “vertical” approach to leprosy. Integration has been the policy in many countries for some time now but it is important that progress should be monitored – for example a study of integrated control in India has recently been published [3].

Early diagnosis and early case detection poses particular problems when leprosy programmes are integrated. Leprosy is often not recognised, or considered as a possible diagnosis, by non-specialist health workers.

Various forms of MDT are currently in use and this can cause some confusion. WHO believes that a uniform regimen would simplify treatment within integrated programmes. Currently, it is exploring the use of a short uniform treatment regimen for all types of leprosy patients called uniform multi-drug therapy (U-MDT). This would consist of treatment of all patients for six months with three drugs: rifampicin, dapsone and clofazimine. A trial under way in India and China is said to be producing some promising preliminary results [4], and another trial is in progress in Brazil, However, the concept of U-MDT is controversial; some critics doubt its feasibility [5].

Research is also needed at a more “basic” level. There is still much that is not understood about the mechanisms of transmission. We also need to understand more about how the disease agent (Mycobacterium leprae) causes nerve damage. (It is already known to involve “leprosy reactions” resulting from the response of the infected person’s immune system – see a recent review article [6].) Such research could lead to the discovery of methods to prevent nerve function impairment. Diana Lockwood’s team at the London School of Hygiene & Tropical Medicine is studying the molecular aspects of nerve damage in leprosy with the aim of improving outcomes for patients. A recent editorial [7] discusses the International Federation of Anti-Leprosy Association’s Co-ordinated Programme of Research on Nerve Function Impairment and Reactions in Leprosy (INFER) and calls for more research in this area. Specialists stress that a high proportion of patients with nerve function impairment develop nerve damage prior to diagnosis, making clear the need for prompt diagnosis.

And resistance to some of the drugs used in MDT has been detected – see a recent review [8] Surveillance to monitor the resistance situation is important. New drugs may one day be needed, creating another research priority.

Input needed from the social sciences

The social, behavioural and psychological aspects of leprosy and its control have been severely neglected areas in terms of research; specialists in the many different disciplines relevant to leprosy are rarely in communication with each other [9]. Social science input is particularly required to help understand the biggest barrier to providing treatment to people with leprosy – the stigma associated with this disease.

Religious organizations continue to play a major role in leprosy control. Indeed treatment of people with the disease has long been accorded an emblematic status by some Christian groups, as it provides an illustration of the need for compassion towards those who have been rejected by society. It is therefore remarkable that after so long stigma is still so widespread.

Under the Japanese Leprosy Prevention Law (1953), patients with leprosy were forced to enter isolation yards in special medical centres, which were located in small islands or distant mountains. This segregation policy was only repealed in April 1996. According to the laws of some Indian states, people with leprosy still cannot hold a driving licence, travel by train or stand in local elections. Having leprosy is also grounds for divorce. The employment that people affected by leprosy are allowed to perform is restricted, and the restrictions remain even years after a person has been cured. (See TropIKA.net Blog.) A recent news report from Bangladesh also paints a disturbing picture of the experiences of patients there.

The last few months have seen some encouraging developments; a new initiative to reduce discrimination launched in Southeast Asia was reported in TropIKA.net News, and in South Korea the Prime Minister made an official apology to a group of people with the condition for the treatment they have received over the years. Nevertheless, we need to understand more of the factors that lead to stigma and how it can be overcome. Some years ago research [10] suggested that awareness-raising campaigns and improvement in accessibility to treatment can reduce stigma. Further studies of this nature are required.

In 2002 a WHO expert group meeting on leprosy [11] concluded that social, psychological and behavioural research methods could make a particular contribution in the following areas: community awareness and attitudes to leprosy, first symptoms and help seeking behaviour, adherence with treatment, and socio-economic aspects of rehabilitation. Similar conclusions were reached at a meeting in Brazil [12] in the same year that listed seven priority areas for social research on leprosy:

the impact of stigma on self-care practices
the impact of teaching by major religious faith on leprosy
the development of a generic scale to measure stigma
drawing on experience with other stigmatized conditions
aspects of community-based care
how to develop positive image and self-esteem among people afflicted with leprosy
the impact of MDT on stigma.

There is no doubt that these all remain priority areas for research. What is now needed is support to enable such studies to take place.

Research on leprosy and other neglected infectious diseases may benefit from adopting a human rights perspective [13]. It will be some time before elimination programmes will finally consign this ancient disease to history. In the meantime, people afflicted by leprosy have the right to a better quality of life. Research can play a major part in seeing that those rights are met.

References

1. WHO (2009) Global leprosy situation. Wkly Epidemiol Rec; 84(33):333-340. Available from: http://www.ncbi.nlm.nih.gov/pubmed/19685606

2. Varkevisser CM, Lever P, Alubo O, Burathoki K, Idawani C, Moreira TM, Patrobas P, Yulizar M (2009). Gender and leprosy: case studies in Indonesia, Nigeria, Nepal and Brazil. Lepr Rev; 80(1):65-76. Available from: http://www.ncbi.nlm.nih.gov/pubmed/19472853

3. Siddiqui MR, Velidi NR, Pati S, Rath N, Kanungo AK, Bhanjadeo AK, Rao BB, Ojha BM, Krishna Moorthy K, Soutar D, Porter JD, Ranganadha Rao PV (2009). Integration of leprosy elimination into primary health care in orissa, India. PLoS ONE; 4(12):e8351. Available from: http://www.ncbi.nlm.nih.gov/pubmed/20020051

4. Kroger A, Pannikar V, Htoon MT, Jamesh A, Katoch K, Krishnamurthy P, Ramalingam K, Jianping S, Jadhav V, Gupte MD, Manickam P (2008). International open trial of uniform multi-drug therapy regimen for 6 months for all types of leprosy patients: rationale, design and preliminary results. Trop Med Int Health; 13(5):594-602. Available from: http://www.ncbi.nlm.nih.gov/pubmed/18346026

5. Ji B, Saunderson P (2003). Uniform MDT (U-MDT) regimen for all leprosy patients--another example of wishful thinking. Lepr Rev; 74(1):2-6. Available from: http://www.ncbi.nlm.nih.gov/pubmed/12669926

6. [No author’s name given (2009).] Leprosy as a neurological disease. Lancet Neurol; 8(3):217. Available from: http://www.ncbi.nlm.nih.gov/pubmed/19233026

7. Smith WC, Lockwood DN, Van Brakel WH, Nicholls PG, Soutar D (2009). Collaborative programmes of research in leprosy: the INFIR programme. Lepr Rev; 80(2):124-128. Available from: http://www.ncbi.nlm.nih.gov/pubmed/19743616

8. Matsuoka M (2010). Drug resistance in leprosy. Jpn J Infect Dis; 63(1):1-7. Available from: http://www.ncbi.nlm.nih.gov/pubmed/20093754

9. Scollard DM (2003). The social dimensions of leprosy. Int J Lepr Other Mycobact Dis; 71(3):246-247. Available from: http://www.ncbi.nlm.nih.gov/pubmed/14608822

10. Paz CJ, Medina IR, Ventura E (1990). A multidisciplinary study of stigma in relation to Hansen’s disease among the Tausug in the Philippines. Social and Economic Research Project Reports, Geneva, UNICEF/UNDP/World Bank/WHO Special Programme for Research and Training in Tropical Diseases/World Health Organization, (TDR/SER/PRS/7). Accessible online: http://www.who.int/tdrold/publications/publications/pdf/seb_topic6.pdf.

11. World Health Organization (2002). Report of the Scientific Working Group on Leprosy; TDR/SWG/02. Accessible online: http://www.who.int/lep/resources/SWG02.pdf.

12. 16th International Leprosy Congress, Salvador, Brazil (2002). Leprosy stigma and its psychosocial consequences; Report of the pre-congress workshop on social science and leprosy. Accesible online: http://www.aifo.it/english/resources/online/books/leprosy/Social%20Workshop%20Report%20ILA02.pdf.

13. Hunt Paul (2009). Neglected diseases: a human rights analysis. World Health Organization on behalf of the Special Programme for Research and Training in Tropical Diseases; Special topics in social, economic and behavioural research report series; no. 6, TDR/SDR/SEB/ST/07.2. Accessible online: http://apps.who.int/tdr/svc/publications/tdr-research-publications/neglected-diseases-human-right-analysis.