The Stigma of Leprosy


There are a lot of health conditions that bear the burden of stigma, but one of the most powerful images of stigma is the one which is related to leprosy (Weiss, 2008). Leprosy is a chronic infectious disease caused by a bacillus called Mycobacterium leprae. The skin, the peripheral nerves, mucosa of the upper respiratory tract and the eyes are mainly affected by leprosy. The disease has afflicted humanity since the beginning of human society and today, there are still many endemic countries in Asia, Africa and Latin America. It is estimated that there are between one and two million people visibly and irreversibly disabled due to past and present leprosy (WHO 3, 2012). India has the world's highest incidence rate of leprosy, with 126.800 new cases in 2010 (WHO 1, 2012). Discrimination and stigmatization against people with leprosy was and still is a major problem with serious consequences (Barkataki, 2005). People who are being stigmatized often suffer from psychosocial problems  and stigma can lead to delay in diagnosis (Brakel, 2008). Delay in diagnosis can have huge negative outcomes, since early diagnosis and treatment are the most effective way of preventing disabilities in leprosy, as well as preventing further transmission of the disease (Rodrigues, and Lockwood, 2011). 
The diagnosis of leprosy itself is easy and most countries with a high incidence rate are aiming to fully integrate leprosy services into existing general health services, which is especially important for poor communities most at risk from leprosy (WHO 2, 2012). The diagnosis is most commonly based on clinical signs and symptoms and only in rare cases further investigation to confirm a diagnosis is needed. In a country with a high number of leprosy cases, a person should be regarded as having the disease if he or she shows skin lesions or positive skin smears (WHO 4, 2012). Skin lesions can be single or multiple, they are usually less pigmented than the normal skin and may show loss of sensation to light touch, since sensory loss is a typical feature of leprosy. The disease can also cause nerve damage, like thickened and/or non-conducting nerves. Leprosy can occur at every age; also young children can get infected (WHO 5, 2012). Since 1995 every endemic country has a multi-drug therapy available, which can cure patients within six to twelve months (Senior, 2009).The mechanism of transmission of leprosy is not exactly known but most recently it is thought that transmission takes place by the respiratory route. Though, other possibilities, such as transmission through insects, cannot be excluded (WHO 5, 2012). 
Despite of the fact that the exact route of transmission is not known, leprosy has been regarded as extremely contagious since ages (WHO 1, 2012). This is one of the factors that contribute to the terrifying image of leprosy that has left behind in history and human memory. Next to contagious, leprosy is often characterized as mutilating and incurable and an infection will lead to rejections and exclusion from society (WHO 1, 2012). This can be seen as a health-related stigma, which according to Weiss (2008) means:  "A social process or related personal experience characterised by exclusion, rejection, blame or devaluation that results from experience or reasonable anticipation of an adverse social judgement about a person or group. In health related stigma, this judgment is based on an enduring feature of identity conferred by a health problem or health related condition". People who are being stigmatized are often labelled by society, e.g. as a leprosy sufferer. In many cases a stereotype is attached to this label, like very contagious, cursed or sinful. The person is reduced to the stereotype and 'normal' people tend to separate themselves from them. They will use expressions such as "people like that" to make clear they are different and do not belong to society. This rejection from society leads to loss of status of the stigmatised person and to actual discrimination (Brakel et al, 2011). The problem of stigmatization applies especially to women (Nicholls, 2005).
Factors which cause stigma according to the ILEP Guidelines to reduce stigma are: fear, unattractiveness, unease, association, values and beliefs, policies or legislation and lack of confidentiality (Brakel et al, 2011). Inadequate or incorrect knowledge about the disease and current treatment underlie much of these factors (Barkataki, 2005). These wrong beliefs about leprosy are strongly embedded in society (Bekri et al, 1998). An individual suspecting to live with leprosy wants to avoid diagnosis since it will lead to judgement of living in sin and being cursed according to his or her community (Cross, 2006). Other problems are the low awareness of relative easy diagnosis and antibiotic treatment availability for leprosy patients and the fact that people still rely on traditional healers and visit alternative practitioners since it is culturally accepted and easy accessible (Bekri et al., 1998). Besides, many people from poor communities and especially Indians, experience difficulties in contacts with regular health services, the communication and behavioural norms withhold people from going to see a doctor (Angel and Thoits, 1987). In the last two decades much more knowledge is available as well as excellent treatment, but still there is a large number of people that seem ignorant or weakly motivated to seek early treatment, which leads to delay in diagnosis, due to stigma (Brakel et al, 2011). 
Delay in diagnosis is the time taken from first becoming aware of the symptoms of disease through to the start of effective treatment, this delay can often take years (Rodrigues and Lockwoord, 2011) During this time the person who is infected first ignores symptoms or tries to monitors them, then tries ineffective traditional or popular cures and finally he or she will go to private or general health service practitioners to reach a correct diagnosis and start effective treatment (Nicholls et al., 2005). During this time the risk of nerve damage increases, since the disease can develop almost unnoticed. The damage that is caused during this time, is irreversible (Rodrigues and Lockwood, 2011). Delay in diagnosis has emotional consequences as well; an affected person will have a hard time keeping it secret and will miss emotional and social support from family (Brakel, 2012). Another consequence of delay in diagnosis is that the patient will be longer contagious, since it requires more time before the person starts with treatment. This may prolong transmission in the community (Brakel et al, 2011). According to the WHO (5, 2012) are "early detection and effective treatment the keys to breaking the chain of transmission and eliminating leprosy".   
As mentioned above, delay in diagnosis is not the only negative consequence of stigma. Once a person finally does get diagnosed and is being stigmatized he or she will often suffer from psychosocial problems. These problems include psychological stress, depression and other psychiatric morbidity, fear, increased risk of disability and advanced disease, marital and relationship problems and other social participation restrictions such as reduced education opportunities (Brakel, 2003). These restrictions can also lead to loss of employment or reduced employment, which may result in an economic burden for the affected person and his or her household, since loss of or reduced employment can cause or aggravate poverty. Overall, stigma is likely to have a negative impact on the quality of life of affected persons, their family, health programmes, and on society (Brakel et al, 2011). 
Despite the current knowledge about and the serious consequences of stigma, there has not been much progress in systematically addressing stigma in public health programmes. Much research has been done on leprosy, but much less on stigma (Brakel, 2003). More knowledge about stigma, especially to find out how it exactly works, is required. But this is extremely difficult to measure and there is a lack of tools to do this, which is particularly a problem in developing countries. Leprosy is not the only disease that bears the burden of stigma, other diseases, e.g. aids/HIV, do too. Currently, quite a number of scales and indicator sets have been developed to apply stigma in one particular health field only but it would be beneficial if stigma measuring instruments are developed to be applicable across different public health areas (Brakel, 2003). These instruments must be applicable across different cultures too, but this presents no difficulties because many areas of life affected by stigma are remarkably similar in different countries, despite the significant cultural differences (Brakel, 2003). To avoid duplication it is not necessary to develop new instruments, but existing instruments should be further developed to do research on stigma (Brakel, 2003).
Once it is understand how stigma works, it is relatively easy to measure what will help to reduce it (Brakel et al, 2011). With the current knowledge it seems like there are several things that can be done to reduce stigma. First, local awareness should be created, without people realising it. Second, labelling persons with a certain health condition, like leprosy, should be avoided, just as using stereotypes. To create local awareness stigma should be addressed more systematically and on a larger scale, which requires specific intervention strategies. Research has demonstrated that interventions which target several levels at the same time are more effective in reducing stigma than interventions which only target one level. Different levels that can be targeted are the affected persons, their families and the health workers. In some cases, a relatively small change can reduce stigma significantly for affected persons. Like self-care to prevent chronic wounds, which will trigger to empower a patient. This will increase self-esteem and social status, and in turn reduce stigma. Of course, in many other cases, stigma reduction needs a larger carefully designed intervention programme and more time (Brakel et al, 2011). There is still a long way to go but it is important that the problem of stigma will be solved. As argued in this essay stigma related to leprosy is still a significant problem. With effective treatment available today, stigma should not be the reason why people needless suffer from leprosy. Patients need to get diagnosed directly, get effective treatment and go one with their lives after being cured. 












References 

Angel, R. Thoits, P. (1987) The impact of culture on the cognitive structure of illness. Culture Med Psychiatry, 11: 465-494.

Barkataki, P., Sheo, K., Rao, P.S.S.(2005). Knowledge of and attitudes to leprosy among patients and community members: a comparative study in Uttar Pradesh, India.

Bekri, W., Gebre, S., Mengiste, A., Saunderson, P.R., and Zewge, S. (1998) Delay in presentation and start of treatment in leprosy patients: a case control study of disabled and non-disabled patients in three different settings in Ethiopia. Int J Lepro Other Mycobact Dis, 66: 1-9.

Brakel, van W. (2003) Measuring Leprosy Stigma: A preliminary Review of the leprosy literature. International Journal of Leprosy and Other Mycobacterial Diseases, 71(3): 190-197.

Brakel van, W., Cross, H., Declerecq, E., Deepak, S., Lockwood, D., Saunderson, P., Cairns Smith, W., Batty, J., Nahodilova, L., Soutar, D., Augustin, V., Ebenso, B. (2010) Review of leprosy research evidence (2002 -2009) and implications for current policy and practice. Leprocy Review, 81: 228-275

Brakel van W., Voorend, C., Ebenso, B., Cross, H., Augustine, V. (2011) Guidelines to reduce stigma. The International Federation of Anti-Leprosy Associations (ILEP) and the Netherlands Leprosy Relief (NLR),  London / Amsterdam

Cross H. (2006) Interventions to address the stigma associated with leprosy: A perspective on the issues. Psychology, Health & Medicine, 11(3): 367-373.

Nicholls, P.G., Chhina, N., Bro, A.K., Barkataki, P., Kumar, R., Withington, S.G., and Smith, W.C. (2005) Factors contributing to delay in diagnosis and start of treatment of leprosy: analysis of help-seeking narratives in northern Bangladesh and in West Bengal, India. Leprosy Review, 76: 35-47.

Rodrigues L.C., and Lockwood, D.N.J. (2011) Leprosy now: epidemiology, progress, challenges, and research gaps. Lancet Infectious Diseases, 11: 464-470.

Senior K.(2009) Stigma, chemoprophylaxis, and leprosy control. Lancet Infectious Diseases, 9: 10

Weiss, M.G., (2008) Stigma and the Social Burden of Neglected Tropical Diseases. PLoS Negl Trop Dis, 2(5): e237. doi:10.1371/journal.pntd..

WHO, 1 (2012) Leprosy new case detection rates, data reported to WHO as beginning of January 2011. Consulted on 10 October 2012 via http://www.who.int/lep/situation/Leprosy_DR_2010.pdf.

WHO, 2 (2012) Leprosy Today. Consulted on 17 December 2012 via http://www.who.int/lep/en/

WHO, 3 (2012) Leprosy the Disease. Consulted on 17 December 2012 via http://www.who.int/lep/leprosy/en/index.html

WHO, 4 (2012) Diagnosis of Leprosy. Consulted on 17 December 2012 via http://www.who.int/lep/diagnosis/en/index.html

WHO, 5 (2012)  Transmission of Leprosy. Consulted on 18 December 2012 via http://www.who.int/lep/transmission/en/index5.html