Unveiling The Leprosy Burden:
A Study of Vulnerable Populations in Meerut and Beyond
Nikita Tayal
B.A. LL.B., Bennett University, Greater Noida, Uttar Pradesh, India.
*Corresponding Author E-mail: nikitatayal12@gmail.com
ABSTRACT:
This study report investigates the impact of leprosy on people living in Meerut, India and other places. The findings from their surveys and statistical analysis found many issues that make it hard for persons with leprosy to get care. Some of such are poverty, awareness about the disease and prejudice. In many cases, leprosy sufferers feel isolated when others fail to understand their condition. This is because they are in a vulnerable class in society. More should be done to help them according to the report. Important factors include making everyone feel loved and respected, improving healthcare as well as raising awareness about leprosy. These steps could improve life both in Meerut and other areas where this condition is prevalent.
KEYWORDS: Leprosy, Prejudice,
INTRODUCTION:
For so long, leprosy has been socially stigmatized and assumed to be a separate malady from others. This stigma which is part of the society’s view has serious implications for people with the disease, as well as their families. The work by Zachary Gussow and George S. Tracy delves into the intricate social history of leprosy, focusing specifically on its 19th and 20th century facets. By investigating why there are stigmas attached to leprosy and what they have done about it so far; this study aims to enlighten people about attempts at destigmatizing them and some of the beliefs that support these actions. In history, leprosy went along with contagion or godly retribution; skin disfigurement and nerve damage being only two among several reasons that make it a misery.
A lot of ancient books as well as cultural beliefs have misled many people about leprosy which in turn led to ill-treatment and isolation of those found to have tested positive for the ailment. Health practitioners, advocacy groups, and affected communities have engaged in activities aimed at debunking myths around this condition thereby curbing its stigma.
There are more people now who are aware that eradicating leprosy stigma demands comprehensive approaches like community participation, awareness campaigns and policy measures. They can form a society, which is equitable and supportive to all by supporting empathy, inclusivity as well as recognition of those affected by leprosy.
Beyond health implications there has been further stigmatization of the patients with leprosy which hinder their ability to access medical help and participate in the society fully. All these forms happen because of discrimination as well as social exclusions such as economic hardships, educational barriers and lack of employment opportunities or social integration opportunities.
Despite some progress in promoting acceptance and understanding, ending prejudice associated with leprosy necessitates an ongoing multi-pronged approach. To succeed governments, civil society organizations healthcare providers and affected communities must join hands.
LITERATURE REVIEW:
The leprosy literature is a source of information about this age old disease. Mycobacterium leprae, the causative agent of leprosy, can grow for as long as 20 years and mainly affects the
skin and nerves. If left untreated, it may cause deformities or disabilities. Various indicators have guided control measures towards global efforts that have been made over time to wipe out leprosy from being a public health problem. Despite significant success in reducing leprosy cases, static new case detection rate for the last ten years remains one of the challenges in India. Inadequate quality monitoring, hidden caseloads, low community awareness and delay in detecting cases are some of them. The number has increased significantly with almost 3 million people in the country who need care for ailments related to leprosy while there were few such incidences earlier on. Recent studies indicate that early and active case finding is key to effective control of leprosy. Among other strategies towards early identification is initiating activities like leprosy Case Detection Campaigns (CDC) and routine surveillance.. It requires healthcare providers’ training and intersectoral collaboration with various health programs to ensure comprehensive case detection and treatment across all platforms.
During the 1800s and 1900s, Hansen’s disease was more than a malady; it was a matter of social disgrace. People affected by leprosy often faced extreme segregation and prejudice in their communities. This discrimination emanated from misunderstanding and fear that people had towards the condition. In order to de-stigmatize leprosy which had been highly stigmatized in the past, it had to be comprehensively understood. Leprosy has traditionally been ostracized due to its association with biblical references and myths about it. This increased anxiety for the societies because they believed leprosy differed from other diseases. Over time, leprosy has been destigmatized through exposure of misconceptions and inaccuracies within medical, social and historical contexts. The approach intended on replacing negative sentiments with positive ones by erasing biases/ stereotypes pertaining to this group while providing empirical evidence to support such claims. During the nineteenth century, the term “plague” or “fever” was commonly used as a catch-all for classifying leprosy that indicated ignorance about its specific characteristics . Yet, in 1874 Leprosy was eventually acknowledged as a bacterial infection following discovery of mycobacterium leprae and advances in medicine made after that point Misunderstandings still lingered even after this finding especially on matters concerning transmission of infection. The Hawaii Leprosy Outbreak of the 1860s constituted a major turning point in Western perceptions of the disease. This further heightened fears about contagion and provoked broad scale quarantine procedures especially following discovery of the bacterium that caused it.
Moreover, Father Damien’s story who contracted leprosy while caring for patients led to more public apprehension over how this disease was transmitted. During the late 19th century, worldwide colonies for leprosy were developed alongside increased isolationist trends. Governments passed laws on segregation as they believed this would prevent spread of Hansen's disease. Nonetheless, despite such attempts at combating it, by the end of the 19th century, leprosy was considered “almost incurable” due to failures in treatment. A time characterized by sensationalized reports and projections loomed; news items such as these helped shape negative opinions about leprosy. With writers and other public figures depicting it as an impending threat to society, there were wide-spread concerns regarding this disease. However, subsequent academic investigations have revealed that environmental or demographic factors also played crucial roles in causing outbreaks of leprosy hence debunking overly simplistic accounts for its diffusion. As a result, towards conclusion of 19th century Europe and other Western nations experienced challenges presented by Leprosy on colonies and territories. Due to the recurrence of the disease in places such as India and increased international travel and trade, concerns were raised that it could infect people in Europe. There were also moves to adopt stricter quarantine measures and enact laws that would prevent movement of those suspected to be carriers of the illness. Meanwhile, scientific advances on leprosy pathogenesis and treatment continued albeit at a slow pace.
However, there still existed a social stigma which hampered research funding and collaboration amongst scientists. In addition, due to two world wars and economic instability encountered in the 20th century, leprosy research and treatment faced more problems that required more focus and resources from the global community. Nevertheless, determined individuals and organizations kept their fight for improved access to health care services as well as human rights so as to better lives of persons with leprosy. By mid-century significant progress had been made in understanding leprosy; additionally drug combinations introduced since 80s had altered the course of therapy completely. That being said, medical progress was but one factor leading toward such gradual DE stigmatisation of leprosy; Awareness and changes in social attitudes have also contributed to the possibilities of openness that accept and integrate the infected into the society. Even though leprosy is still a problem in some parts of this world today, especially in underdeveloped areas with poor access to healthcare, efforts are being made to lower its incidence rates and impact on society. The complete elimination of the disease is still targeted.
Gussow, Z., and Tracy, G. S. Stigma and the leprosy phenomenon: the social history of a disease in the nineteenth and twentieth centuries. Bulletin of the History of Medicine. 1970; 44(5): 425–449. http://www.jstor.org/stable/44450797
Bailey’s observations demonstrate several situations faced by Indian leprosy patients during the late 19th and early 20th centuries. Asylums for those affected by leprosy had different ownership patterns, management regimes as well as living standards. Leprosy patients have sometimes sought refuge at long-standing native charity hostels called dharmshalas which collected various destitute people without rendering special attention to lepers among them. These shelters usually provided substandard care for individuals with leprosy who were located near temples or other holy sites. In addition to religious or charity organizations, there were other institutions established by districts, municipalities or provinces. Some accommodations were properly maintained and provided appropriate living quarters while others were makeshift and deficient including tiny spaces with very poor air circulation.
There were some committees, local governments or societies running others. Municipal support may be uneven or careless even if it can be beneficial in certain situations depending on the goals of governing bodies. Additionally, reports have been made regarding unofficial leprosy groups living in their own homes but possibly at places closer to busy roads or suitable points for begging. As was in Bhopal State for instance, some leprosy patients were forcibly placed into asylums against their wishes by the government. They included well designed, spacious houses and portable structures or small rooms that had different built environments than today’s locations. Various regions of the country had differing levels of resources and care; thus, not all asylums operated at full capacity. Late 19thand early 20th century India witnessed several living situations and treatment choices for persons with leprosy. This is what Bailey established. In a number of areas lepers sought refuge in traditional dharmshalas that offered accommodation to many needy people without having separate facilities for those suffering from leprosy. The shelters were not particularly well equipped for leprosy care and were often located near temples or other religious sites. Some joined municipal or district bodies, or popular charities. Some facilities provided the necessary living conditions as well as a treatment regime, but others had to improvise while being poorly maintained and small with limited ventilation. In some of these places they were owned by local cooperatives, communities or boards while some were managed by different organizations. Nevertheless, some services may be overlooked due to uneven and sometimes
non-existent municipality support which is beneficial on the odd occasion. There also existed groups of patients who lived separately from the rest of society; and such ones could easily be found on roadsides or begging spots. A few individuals have been committed into lunatic asylums under compulsion.
These lodgings ranged from fine living quarters to mere bedding in makeshift structures made of bamboo poles that serve as walls. Such cases demonstrated disparities in the availability of healthcare across various geographical areas due to their rural capacity limitations: this can be seen from her narratives, which unveiled a complicated situation in India at that period regarding people affected by leprosy. Other than cases of maltreatment and disregard, they also represent government, religious and benevolent efforts with a composite landscape. Such differences in resources and infrastructure between different regions render the entire process impossible for some people even with attempts to give them treatment or support. In general findings from Bailey’s research underscore the importance of responding to India’s leprosy problem more comprehensively and humanely. This would mean combating social stigma and discrimination against people with the disease as well as improving quality of care and living conditions in asylums. It also calls for further coordination among governmental, not-for-profit, and grassroots organizations so that all leprosy patients can be given proper assistance enabling them to live dignified lives.
Robertson, J. The Leprosy Asylum in India: 1886–1947. Journal of the History of Medicine and Allied Sciences. 2009; 64(4): 474–517. http://www.jstor.org/stable/24631910
Leprosy is an infectious disease unlike many others; it is transmitted by Mycobacterium leprae bacteria. Some techniques are still being debated but data show two main ways: close contact or respiratory droplets. The path of skin-to-skin contact is well known. Individuals with untreated leprosy, especially those with severe multibacillary disease, can spread the germs by touching skin sores or ulcers. This risk increases if the person receiving treatment has cuts or breaks in the skin. In addition, this may be a problem when one stays long next to someone’s body surface in overcrowded living arrangements. The mechanism of action for respiratory droplets remains unknown.According to some patients’ nasal mucus harboring M. leprae but it is not clear whether this form of bacteria is contagious.Research has shown that bacteria are present in extremely small amounts in the respiratory system and that transmission probably requires close and continuous contact.On the other hand, common colds are much more easily transmitted through the air.Skin-to-skin contact is generally accepted as how leprosy gets passed on through close-quarter contact.There might be a possibility of airborne dissemination through nasal discharge but it would be very unlikely and would require extensive contacts over long time periods.
Sandes, T. L. The Mode of Transmission of Leprosy. The British Medical Journal. 1911; 2(2644): 469–470. http://www.jstor.org/stable/25287600
However, even though it is a curable condition, accessing appropriate medical care poses great challenges among people affected by leprosy. These problems have many related factors and frequently reinforce one another. Leprosy stigma, however, remains a major hindrance. Social exclusion and discrimination can lead to delayed care-seeking behaviour among victims who might be afraid or hold false beliefs about their conditions. This not only
affects their personal health but also hampers efforts of early disease detection necessary for halting its spread. Inadequate health facilities is another challenge especially in the rural areas. Infectious centres that specialize in leprosy diagnosis and treatment must be reached by patients from afar with some them having difficulties deriving from the sickness that make this process expensive and challenging in terms of logistics. Unawareness among healthcare providers is also problematic. There are no cases of misdiagnosis due to ignorance concerning leprosy symptoms. Other health priorities could mean losing funds and focus on leprosy programmes too. And all these issues became worse during the COVID-19 pandemic when leprosy services were occasionally disrupted while healthcare systems were under strain as well. Besides, it may be difficult for patients to access therapy sessions or participate in recovery efforts including other social distancing measures during periods of lockdowns. Overcoming these challenges will require a combination of different approaches. Educating the public to eradicate stigma and promote understanding of the disease is one way. However, there is need for investments in health infrastructure if easy access to specialized care is to be ensured particularly for rural communities. Appropriately managed and diagnosed diseases are contingent on medical practitioners having the required
training. Lastly, integration of leprosy care into existing health systems can improve treatment continuity and accessibility.
The situation could change with better healthcare delivery for those diagnosed with leprosy. Doctors must also receive more training regarding prompt identification of this illness.
Should patients receive early treatment, they may not have as many problems later on. Moreover, improving access to clinics where medicines can be obtained among others for instance transportation or even geographic location through making them easier would enable more patients get their medication especially in countryside areas. Finally, letting everyone know that leprosy isn’t scary and not contagious prevents panic so it makes it easier for people to ask for help.
There are many challenges which prevent leprosy patients from accessing quality healthcare services. This illness comes with stigma being its main impediment. A prevalent misunderstanding about lepra involves thinking that it’s highly contagious and is a punishment from God or gods.
Patients have difficulty in seeking medical care due to the stigma attached to it, which also reinforces prejudice and social exclusion. Leprosy highly affects impoverished neighborhoods apparently more than any other class of neighborhoods. Such communities often lack access to qualified medical personnel, diagnostic equipment and good quality healthcare facilities. This contributes to a high number of undiagnosed and untreated leprosy patients who then worsen their condition making them become more disabled. Leprosy also has mild symptoms that are easy to overlook especially at the onset stage; however this delay in recognizing the disease can lead to severe outcomes and disabilities as well as slow down treatment initiation. Accessing health care might be challenging for patients with leprosy because of geographical constraints. In remote or rural areas where there is no healthcare infrastructure or it is inadequate, patients must travel long distances in order to find the closest medical facility that they can access. This journey may not be easy particularly for individuals who have disabilities resulting from leprosy-related impairment. Also, sometimes leprosy sufferers fail to get health care services due to financial challenges even when they are provided for some reasons. The cost of medical consultations, laboratory tests, prescription drugs and/or treatment programs are beyond what many patients can’t afford.
All these problems require organized activities at various levels. Public awareness campaigns are necessary to address misunderstandings and reduce stigma towards leprosy. Governments and nongovernmental agencies need to enhance healthcare infrastructure, especially in poor areas. There should be financial aid programs that help leprosy patients obtain medical
attention without facing financial challenges. Also, healthcare practitioners should be trained on how to identify and manage leprosy early enough. Such comprehensive interventions can only solve the problem of accessing healthcare by persons with leprosy Cases of Stigma among diagnosed individuals may affect the victims greatly. Discrimination and social exclusion are common outcomes of this phenomenon Secondly, fear or ignorance may lead individuals to avoid those who have leprosy hence rendering them lonely or isolated.
Therefore, self-esteem can decline as a result of being cut off from others which eventually impairs mental health because of such isolation. Moreover, Stigma can create barriers accessing medical services within the communities it operates within . Health issues might be avoided for fear that they will lead to mistreatment by medical professionals.
The condition may deteriorate leading to more disability as a result of this delay. Besides that, this could be aggravated by the fact that most medical facilities might not have enough or qualified staff to take care of these leprosy patients. Moreover, stigma can affect different aspects of life including work and education. This restricts children with leprosy from going for schools as they are bullied thus limiting their learning opportunities. In addition, adults who face employment discrimination find it hard to secure jobs leading to economic instability and reliance. Sometimes stigmatization can also result in family breakups when people are left alone or disowned by their close ones. One thing that could make depression even worse is if you do not have anyone to talk to or socialize with because they will treat you bad and leave you feeling lonely all the time (Ferguson, 2005). Eliminating stigmatization is a necessary action in improving life quality among individuals living with Hansen’s disease. By doing so, it is important to attempt clearing up misinformation for knowledge expansion, and promoting public awareness about the sickness. Providing counseling services and social support helps people overcome psychological effects brought about by stigma (Zylstra et al., 2018). Leprosy patients can benefit from anti-discrimination laws that protect their rights as well as promote their integration into society through policies such as social inclusion programs (World Health Organization [WHO], 2018).
Bennett, B. H., Parker, D. L., and Robson, M. Leprosy: Steps Along the Journey of Eradication. Public Health Reports. 2008; 123(2): 198–205. http://www.jstor.org/stable/25682020
India has the highest number of leprosy cases, with thousands of new cases registered each year. Despite significant advances in controlling leprosy over the years, it remains a public health problem, particularly in densely populated and underserved areas. In this fight against leprosy in India, one sticking point is its continuing stigma. Stigmatization associated with leprosy has always been present; it confines patients to themselves by making sure that they cannot be recognized or diagnosed properly among others. Consequently, the disease continues to progress without being treated leading to permanent disability due to lack of timely medical attention resulting from stigmatization. Additionally, there are many provinces within India where those affected by leprosy may not receive proper help since countrywide efforts do not reach them all because of its vast population mix. A lot of people reside in remote rural areas which have insufficient healthcare facilities and inadequate number of medical personnel for providing health care services. Therefore patients who live far away from these towns might take days before receiving any form of medical help as a result of this geographical blockade between them and ready treatment centres. Moreover, there are also socioeconomic factors behind high incidence rates of leprosy in India.
Inadequate sanitation, crowded housing, lack of clean water and poverty are all conducive to the disease. Immune system weakening by poverty raises leprosy risk in an individual hence denying them access to effective healthcare as well as cleanliness. Also, there are difficulties in ensuring access and adherence to multidrug therapy (MDT) used in treating leprosy. Some patients may find it hard accessing a health facility or not complete their entire treatment course due several reasons such as drug side effects, lack of awareness among others.
Therefore, the government, hospitals, the NGOs and general populous must come together if this has to be resolved. Public awareness campaigns would be aimed at correcting misconceptions and reducing discrimination against people suffering from leprosy.
Development of healthcare will help deliver good diagnosis and treatment services especially in marginalized regions. Social support programs should aid financially weak patients during leprosy treatment till they finish their medication regimen.
However, Bihar with its excess of new cases year in addition to community-based treatments and multidrug therapy (MDT), is still controlling leprosy.
Likewise, leprosy also poses a big problem in the northern Indian state of Uttar Pradesh. The most populous state in India is Uttar Pradesh due to its large population. It caters for both urban and rural inhabitants. However, many parts of the country especially the rural areas as well as the neglected communities are lacking proper facilities for medical treatment and qualified doctors availability. This may lead to limited or no access to diagnostic services and treatment available for leprosy thereby curtailing their chances of getting necessary help. In Uttar Pradesh, stigmatization regarding leprosy is still rife enhancing fear, prejudice and social exclusion for victims of this ailment. Leprosy continues to be a major public health issue in Maharashtra despite ongoing control measures being implemented all through.
Additionally, Maharashtra has different kinds of people such as tribal cultures, villages inhabited by peasants only but also cities that have slums. These situations differ when it come to fighting against leprosy like healthcare availability or unavailability disease knowledge and how illness and disability are culturally viewed. Many new cases arising from Maharashtra particularly among the underprivileged background remain up till now, especially among disadvantaged and marginalised groups, even with the availability of MDT and other treatment options.
Leprosy Control In India. The British Medical Journal. 1945; 2(4422): 466–466. http://www.jstor.org/stable/20349833
The city of Meerut has specific problems that exacerbate the problem of leprosy control. The rapid urbanization and mushrooming shanties which are known as slums too, forms another notable impediment. These areas are more likely to serve as breeding grounds for leprosy and other infectious diseases because they often lack basic facilities such as clean water supply, sanitation and health care services. The high population density in these settlements make it difficult to reach every person who needs treatment and conduct effective public health campaigns. Additionally, migrant laborers from neighboring states who may have limited access to healthcare due to financial constraints tend to come to Meerut because it is a commercial and industrial hub. Most of these migrant populations barely live stable lives with minimum access to basic amenities or welfare programs. Thus, there may be cases of undiagnosed or untreated leprosy among migrating groups causing prolongation of its transmission within those communities with this effect. Furthermore, ignorance and un- education about the disease prevails both among the general public as well as medical practitioners in Meerut just like in any other place where leprosy occurs. Numerous people hold wrong beliefs concerning how leprosy starts and spreads hence leading to stigmatization against affected persons themselves.
Healthcare professionals might not be trained to recognize the early signs of leprosy resulting in missed opportunities for early diagnosis and treatment. Furthermore, managing leprosy in
Meerut is complicated by a lack of specialists in this field such as dermatologists and infectious disease specialists. There may be delays in getting the right treatment for patients if they lack access to professional diagnosis and care thus increasing the likelihood of becoming disabled or developing complications. In this regard, there are initiatives like community- based awareness programs, mobile health clinics, focused outreach among high risk groups including migrant laborers and slum dwellers that have been put in place to address these challenges in Meerut. By doing so, these programmes aim at creating an understanding about leprosy; stigmatizing it less; screening more people; and improving access to care.
Additionally, effective control of leprosy in Meerut can only be achieved when local community organizations work together with NGOs and government institutions to optimize their resources, align their activities. In summary working with all aspects of socioeconomic status cultural beliefs and healthcare infrastructure can help us deal with the problem of leprosy prevalence in Meerut.
https://milaap.org/fundraisers/savera-lepers
CONCLUSION:
In conclusion, it is important to understand the historical background and current situation of leprosy asylums in India since they give a better understanding on the difficulties faced by lepers themselves. Bailey has described cases where patients with leprosy were shunned and subjected to diverse forms of institutionalization like being placed in state-run asylums or religious refuges. These included hospitals established by missionary societies, local societies, towns and districts, all of which indicate complexities of medical treatment and social attitudes towards leprosy throughout time. Although some had relatively better living conditions while others were inadequate or even cruel; hence reflecting the unevenness in managing lepers. Moreover, early detection, treatment, and public health interventions can stop the spread of this disease such as skin-to-skin contact and nasal discharges. Society can overcome socioeconomic factors that contribute to its propagation through creating more inclusive environments for people affected by this condition. Local people need to work together to address Leprosy-related issues in Meerut according to their different roles. By offering community-based, culturally appropriate interventions, we can better serve the underprivileged and stop the spread of leprosy.
1. Gussow, Z., and Tracy, G. S. (1970). Stigma and the leprosy phenomenon: The social history of a disease in the Nineteenth and Twentieth Centuries. Bulletin of the History of Medicine, 44(5), 425–449. http://www.jstor.org/stable/44450797
2. Robertson, J. (2009). The Leprosy Asylum in India: 1886–1947. Journal of the History of Medicine and Allied Sciences, 64(4), 474–517. http://www.jstor.org/stable/24631910
3. Sandes, T. L. (1911). The Mode Of Transmission Of Leprosy. The British Medical Journal, 2(2644), 469–470. http://www.jstor.org/stable/25287600
4. Bennett, B. H., Parker, D. L., and Robson, M. (2008). Leprosy: Steps Along the Journey of Eradication. Public Health Reports (1974-), 123(2), 198–205. http://www.jstor.org/stable/25682020
5. Leprosy Control In India. (1945). The British Medical Journal, 2(4422), 466–466. http://www.jstor.org/stable/20349833
6. https://milaap.org/fundraisers/savera-lepers
Received on 09.09.2024 Revised on 26.09.2024 Accepted on 12.10.2024 Published on 05.12.2024 Available online on December 31, 2024 Res. J. of Humanities and Social Sciences. 2024;15(4):318-324. DOI: 10.52711/2321-5828.2024.00050 ©AandV Publications All right reserved
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