A recent study revealed that about 85 percent leprosy disabled people in Bangladesh have been suffering from psychological problems besides many other disease-related complications.
The sufferings of the excluded and stigmatised community have intensified manifolds during the Covid-19 pandemic.
Most of this vulnerable community has been literally left behind from pandemic response programmes as well as deprived of proper information related to hygiene and other health issues during this crisis.
A study titled 'The Quality of Life (QOL) and Mental Health Status (MHS) of People Affected by Leprosy and People with Leprosy Disability in Bangladesh’ brought the tragic scenario to the fore.
The cross-sectional study was conducted between August 2019 and May 2020 in Dhaka, Moulvibazar, Meherpur, Kustia, Chuadanga and Thakurgaon.
The researchers reached 94 respondents, diagnosed with leprosy, 80 percent of them were without disability while 20 percent of them suffered from leprosy disability.
The research supported by The Leprosy Mission International, Bangladesh, (TLMIB) was authored by Hosne Ara Hoque of Advancing Leprosy and Disadvantaged Peoples’ Opportunities Society (ALO) while INTERACTION Chief Executive Serajud Dahar Khan played an advisory role.
According to the World Health Organization (WHO), actions needed in 22 priority countries including Bangladesh as people affected by leprosy continue to suffer discrimination and lack of access to medical care.
Leprosy itself is a highly stigmatised and disgraceful term in society while disability from the disease is the other concern that victimises the patient drastically, said the study.
Study findings showed that over mental health screening, 69 percent of the people affected by leprosy go through psychological difficulties. It is observed that 85 percent of the leprosy disabled people and 65 percent of the general leprosy patients were in poor psychological condition.
Leprosy disable people lack Quality of Life
According to the study, the overall Quality of Life (QoL) of the people with leprosy disability was much worse than respondents without disability.
Altogether 40 percent of leprosy-disabled persons said they were living a poor QoL while 20 percent had very poor QoL.
However, 52 percent of leprosy-affected people without a disability were found with a marginal level of QoL.
Altogether 31 percent of the leprosy-disabled persons said they were dissatisfied with their health condition, while 10 percent said they are very dissatisfied.
However, 40 percent of leprosy-affected people without disability had marginal level satisfaction.
Leprosy disability and insomnia
The marginalised and endangered community goes through another lifelong crisis which is insomnia.
Altogether 30 percent of people with leprosy disability face more difficulty in sleeping while 20 of them were in lower cut-off levels.
However, 51 percent of the leprosy-affected people without disability had moderate level satisfaction in regard to sleep.
Negative feelings and dissatisfaction
Altogether 55 percent of people with leprosy disability said they were very dissatisfied with daily living while 44 percent without disability said they were neither satisfied nor dissatisfied.
According to the satisfaction level of enjoying life, the study revealed that both leprosy affected people with and without a disability do not enjoy life at all.
A total of 41 percent with and 45 percent without disability manifested similar experiences.
However, 16 percent of people without and 10 percent with disability expressed their satisfaction at very much level.
Almost 50 percent of the people with disabilities felt negative feelings quite often.
Perception on self-esteem, value of life
The study shows that the vulnerable community has a very negative perception on self-esteem and value of life.
The major 60 percent of people with leprosy disabilities expressed that they feel that life is totally meaningless while 44 percent without disability think that there is some hope in life.
Some 10 percent of the people with disabilities expressed that they were leading a moderately meaningful life, while 25 percent of people without a disability have the same experience.
Poor financial life
The research findings revealed that the majority of leprosy-infected with disability go through severe financial crises.
A total of 60 percent of the people with disabilities had too little money to meet their basic needs while 20 percent were found in extremely destitute situations, the study showed.
However, 24 percent of leprosy-affected people without a disability are financially in good condition to meet their basic needs.
Dissatisfaction over access to health services
The leprosy-disabled people were found dissatisfied regarding their access to health services and this has gone to a marginal level during Covid-19 pandemic.
Altogether 40 percent of the leprosy-disable persons expressed dissatisfaction while 18 percent showed extreme levels of dissatisfaction as they have little access to health services.
Meanwhile, some 14 percent of the respondents without a disability were very satisfied.
The researchers recommended some actions on emergency for the people affected by leprosy with and without a disability.
The study suggests a pragmatic intervention to be deployed to properly address the psycho-social impairment for people with leprosy-disability.
The experts also underscored the need for enhanced socio-psychosocial support for improving the quality of life for both the groups who are highly stigmatised in society and live ‘disgraceful’ life.
The study assessed that the mental health and quality of life are major concerns for the people affected with leprosy-disability.
Asked about the crisis of leprosy-affected people with and without disability, Jiptha Boiragee, program support coordinator, TLMIB, “They’re going through unspeakable adversity during this Covid-19 pandemic.”
“The sufferings of leprosy disabled persons have increased many folds and they are going through another brunt of social stigma during this pandemic,” he said.
Underscoring the response to these vulnerable groups, Boiragee said “Both of these groups deserve emergency aid on humanitarian ground and they will need special attention in the post-pandemic period.”
These people require counseling and mental assistance to overcome the disaster and at least find hope of living despite all these happenings in life, Boiragee added.
Similar study results, recommendations
Earlier in 2007, Atsuro Tsutsumi, Takashi Izutsu, Md Akramul Islam, A N Maksuda, Hiroshi Kato among other experts conducted a study titled “The quality of life, mental health, and perceived stigma of leprosy patients in Bangladesh.”
A total of 189 leprosy patients and 200 without leprosy were selected from Dhaka for the study.
According to that study, the patient group's depressive status was significantly more severe than that of the comparison group.
The authors underscored an urgent need for interventions sensitive to the effects of perceived stigma, gender, and medical conditions to improve the QOL and mental health of Bangladeshi leprosy patients.
What is leprosy?
According to the World Health Organization (WHO), Leprosy, also known as Hansen’s disease, is a chronic infectious disease caused by Mycobacterium leprae (a relative of TB).
This disease primarily affects the skin, the peripheral nerves, mucosal surfaces of the upper respiratory tract and the eyes. The first signs of leprosy are patches of skin that look paler than normal or sometimes nodules on the skin.
It is known to occur at all ages ranging from early infancy to very old age.
WHO as well as organizations like TLMI provide confirmation that leprosy is curable and treatment in the early stages can prevent disability.
Leprosy in Bangladesh
According to the National Leprosy Elimination Program (NLEP) yearly for 2019, altogether 2,26,711 leprosy cases were detected in Bangladesh in between 1985 and 2019 but after receiving MTD treatment 2,18,538 of them made recovery from the disease during this period.
NLEP data shows 26,479 people detected with disabilities caused by Leprosy in between 1985 and 2015 in the country.
The data also reveals that around 4,000 patients were detected per year in Bangladesh over the last few years, with this figure standing at 3,638 in 2019.
Among the newly detected cases, 252 people were found with leprosy disability in 2019, NLEP data shows.
In India, 127,334 new leprosy cases were detected from 2016 to 2017, and 4.6 percent of them had Grade 2 disability at the time of diagnosis.
The World Health Organization (WHO) shows that a total of 20,8619 new cases of leprosy were reported in 2018 from 127 countries.
According to the United Nations (UN), "The level of serious disability is alarming and completely unnecessary.”
“Too many people with leprosy remain trapped in a never-ending cycle of discrimination and disability,” it said.