Mainstreaming Leprosy-affected People a Big Challenge in Bangladesh

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Feroza Begum, Leprosy activist. Credit: Rafiqul Islam / IPS

DHAKA, Bangladesh, Dec 12 2019 (IPS) – When Feroza Begum was first diagnosed with leprosy in 2006, it felt as though she had been struck by a thunderbolt due to the deep-seated prejudice in her society that the disease is a curse from Allah (God).

“ I was affected with leprosy disease, nobody accepted me (in the past). They had made me isolated. I cannot forget the plight I suffered at that time. Even my family was broken as I was left by my husband,” she told IPS. The 35-year old says she was ostracized and made to feel like a lesser person.

Feroza travelled about 200 kilometres from Bogura district to Dhaka, the capital city to attend the first-ever Conference of organizations of persons affected by leprosy. Feroza came to listen and talk to other people who had similar stories and also to engage with organizations that are fighting for an end to discrimination of people with leprosy.

“I got married in 2006 and a few days later, I was diagnosed as a leprosy patient’. She says after the diagnosis, members of her husband’s family started ignoring her. ‘They ignored me and did not talk to me and one day sometime in 2007 my husband divorced me and sent me back to my father’s home.”

After returning home, she started treatment with support from a local NGO and she eventually recovered from the Hansen disease. But as a result of the disease, she could not avoid disability.

Leprosy stigma in Communities

Although there is a stigma around leprosy in her society, Feroza is living with a disability and is leading a normal life. “Fighting stigma for a leprosy patient is a hard task in our society and leading a normal life is a challenging task too,” she added.

“Now my mother and I prepare mats and sell them in a local market. This is our only livelihood option but I never bow down to the stigma,” Feroza said.

Dr David Pahan, Country Director of Lepra Bangladesh, said Prime Minister Sheikh Hasina’s announcement of the ‘Zero Leprosy Initiative’ to eliminate the Hansen disease from the country by 2030 is commendable.

“Bringing leprosy patients into the mainstream of society is big for us as there is a negative perception about leprosy in our society,” he told IPS on the sidelines of the conference.

Now it is time for an Action Plan

Although the Zero Leprosy Initiative was announced, formulation of policies and action plans to eliminate leprosy is also a challenging task which lies ahead, he added.

Dr Pahan, who has been working on leprosy elimination since 1996, said leprosy patients must raise their voice together so that the authorities concerned take proper steps to bring them into the mainstream of society.

Dr David Pahan, Country Director of Lepra Bangladesh. Credit: Rafiqul Islam / IPS

Close to 100 leprosy patients and representatives from several organizations working in the field of leprosy attended the landmark leprosy conference in Dhaka which was organized by members of the Leprosy and TB Coordinating Committee (LTCC) and People Organizations, with support from The Nippon Foundation and Sasakawa Health Foundation.

The conference allowed people from across the country to share their experiences about the long plight in the recovering period of the disease.

Bangladesh is still a high burden leprosy country. The registered prevalence of leprosy was 0.7 percent, 0.27 percent and 0.2 percent in 2000, 2010 and 2016 respectively, and stood at 0.19 per 10,000 population in 2018, according to official data. The data also shows that about 4,000 patients were detected per year in the country over the last few years, with this figure standing at 3,729 in 2018.

Access to resources limited

Sonia Prajapoti of HEED Bangladesh, a local NGO working on leprosy control, said the case of leprosy is highly prevalent among tea workers in Sylhet, Habiganj and Moulvibazar districts as they are not aware of the leprosy disease and have limited access to civic amenities.

She said a social awareness must be created among the tea workers to keep them free from leprosy, while the leprosy patients could be brought into the mainstream of society by increasing their social status, providing proper healthcare and creating working opportunities for them.

“Prime Minister Sheikh Hasina’s announcement of the ‘Zero Leprosy Initiative, will increase the voice of the people who have been working on leprosy elimination, and this will help them fight leprosy together,” said participant Shandha Mondal, district coordinator of local NGO Shalom (leprosy) in Meherpur.

Speaking as the chief guest at the conference, Chairman of The Nippon Foundation and WHO Goodwill Ambassador for Leprosy Elimination, Yohei Sasakawa, assured Bangladesh of continuing support of the implementation of ‘the Zero Leprosy Initiative’ which was announced by Prime Minister Sheikh Hasina and which aims to eliminate leprosy by 2030.

“The government has already announced the Zero Leprosy Initiative that will help eliminate the discrimination the leprosy patients have been facing,” he said.

“You, the leprosy patients, know better about the disease than doctors…your government is working to eliminate leprosy by 2030. And we are here to know how we can help your government fight leprosy,” Sasakawa said.

The Nippon Foundation and the Sasakawa Health Foundation of Japan organized a national conference on leprosy in Dhaka on December 11 under the theme “ZeRo leprosy initiative”.

 

Sasakawa Vows to Continue Support for Fighting Leprosy in Bangladesh

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Chairman of the Nippon Foundation and Sasakawa Health Foundation in Japan Yohey Sasakawa speaking at the Conference of Organizations of Persons Affected by Leprosy in Dhaka, Bangladesh. Credit: Rafiqul Islam / IPS

DHAKA, Bangladesh, Dec 12 2019 (IPS) – Chairman of The Nippon Foundation and Sasakawa Health Foundation, Yohei Sasakawa, has assured Bangladesh of continuing support for the Zero Leprosy Initiative announced by the country’s Prime Minister, Sheikh Hasina, aimed at eliminating leprosy by 2030.

Sasakawa was speaking at the opening of the first ever meeting of organizations working on leprosy in Bangladesh.

“The government has already announced the Zero Leprosy Initiative that will help eliminate the discrimination the leprosy patients have been facing,” he told a conference in the country’s capital. Prime Minister Hasina on Wednesday (December 11) also addressed the conference and Sasakawa reminded activists that the country’s leader expressed her commitment to make Bangladesh free from leprosy in the next decade.

Several organizations working in the field of leprosy, like members from the Leprosy and TB Coordinating Committee (LTCC) and People Organizations with support from The Nippon Foundation and Sasakawa Health Foundation, are attending the gathering.

Bangladesh’s leprosy burden ranks fourth-highest in the world. Four thousand new cases are detected annually – an average of 11 to 12 cases per day over the last 10 years. Every year an estimated 3000 leprosy sufferers are affected by complications that require specialized treatment in hospital.

Although the the number of leprosy cases are declining, more than one-third of leprosy patients are facing the threat of permanent and progressive physical and social disability.

Govenment needs help

Calling upon the leprosy patents to extend their support to the government in this regard, Sasakawa said Bangladesh’s Ministry of Health could not fight leprosy alone.

Sasakawa, also a World Health Organisation (WHO) Goodwill Ambassador, said: “You, the leprosy patents, know better about the disease than doctors. Your government is working to eliminate leprosy by 2030. And we are here to learn how we can help your government fight leprosy.”

He asked the participants to play a strong role in eliminating leprosy in Bangladesh. “I hope you will convey the lessons you learnt from the conference today to your community.

“If you all raise voice together, it would be stronger. So, you have to be stronger to fight leprosy (in Bangladesh). Your support is important to reach the goal,” he said.

About his journey as WHO goodwill ambassador, Sasakawa said he has been working on fighting leprosy around the world for the last 40 years.

“I have been providing assistance to about 120 countries, while I have traveled to different parts of the world 700 times to help (leprosy patients),” he said. “No matter which country I visited, the plight of the leprosy patients is the same.”

Sasakawa said he came here to share his opinion and experiences on leprosy from his journey. “I am very happy seeing the faces of leprosy patients who are participating in the conference, as this is the first time … we have met together,” he added.

Highlighting the nature of leprosy patients, the Nippon Foundation chief said the people who get disabilities suffering from leprosy and those become disabled due to road accidents are not the same, because leprosy is an infectious disease.

“That’s why leprosy patients fear to meet and their communities also do not accept it,” he said.

Role of NGO’s in the fight against Leprosy-free world

Sasakawa also praised the role of the NGOs, including Lepra Bangladesh and the Damien Foundation, in fighting leprosy in the country.

Shandha Mondal, district coordinator of SHALOM (leprosy), a local NGO working in Meherpur, said Prime Minister Hasina’s announcement on the Zero Leprosy Initiative will increase the voice of the people who have been working on leprosy elimination, and this will help them fight leprosy together.

Motiur Rahman, a leprosy patient of Gazipur, said the prime minister always gives priority to leprosy patients. For example, he said he had sought accommodation from the Bangladesh premier and he received a house from the Government.

The participants attending the national conference said that the prime minister’s call to local pharmaceuticals to produce medicines and distribute among leprosy patients free of cost is really commendable.

Speaking at the National conference on Zero Leprosy Initiative 2030, Prime Minister Hasina said many Bangladeshi pharmaceutical companies export medicines, and she called on these companies to produce drugs for leprosy locally and distribute those among leprosy patients free of charge.

But, they said, the PM should also instruct the authorities concerned to launch a new programme and announce a special budget for leprosy. This would be more helpful in fighting leprosy in Bangladesh, they said.

The Nippon Foundation and the Sasakawa Health Foundation of Japan organized a national conference on leprosy in Dhaka on December 11 under the theme “ZeRo leprosy initiative”.

 

Taking Bangladesh to Zero-Leprosy, One New Case at a Time

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Sandhya Mandal – a community health worker working on leprosy in Meherpur district of Bangladesh. Credit: Stella Paul / IPS

DHAKA, Bangladesh, Dec 11 2019 (IPS) – Sandhya Mandal has never felt so vindicated. For the past four years, the 36-year-old community health worker from Meherpur – a rural district bordering India – has been traveling 50 km every day along dusty roads on an old motorbike, searching for leprosy patients who needed urgent treatment. But in her community, instead of compliments, neighbours and relatives raised questions about her work and her character. “They ask why I come home so late and what is this ‘work’ that I really do. Some even imply that I might be doing something like prostitution,” Mandal tells IPS.

However, Mandal – project manager at an NGO called Shalom, which works with the government to end leprosy, sat in an audience of diplomats, ministers and health experts from all over the country, listening to Sheikh Hasina – the prime minister of Bangladesh – at a national conference on leprosy. “Nobody can doubt me or my work now,” she says, proudly clutching the yellow invitation card she received from the organizers of the conference – her first to a national-level event.

Mandal has every reason to be in the conference: since 2015 she has searched and found over 300 new leprosy cases. In fact, in November this year, she found 10 new cases on a single day – the result of an intense door-to-door search in Gangni, a small town with a high rate of leprosy. “We opened our database of old patients and contacted each one of them individually. We asked them if they knew anyone around them who had leprosy. Nobody could give us any concrete information, so I went from one house to other and from morning to evening I covered 40 families,” she recalls the drill. It was hard and Mandal did not have any time to eat or drink. But by day-end, she had found eight adults and two children who had visible signs of leprosy. She arranged for all of them to visit the TB and Leprosy Clinic (TLC) in Meherpur, a facility run by the government.

Early detection in leprosy key

Early detection and early treatment are the key to complete cure for anyone affected by leprosy, tells Mujibur Rahaman – a doctor at the TLC Meherpur. “The treatment is free. We have enough medicines. But bringing the affected ones to the treatment facility remains the biggest challenge,” Rahman tells IPS. Bangladesh eliminated leprosy in 1998, but new cases continued to be detected. In 2018, 3 729 new leprosy cases were detected.

Earlier this week, in her opening speech at the national conference, Prime Minister Hasina asserted that Bangladesh was committed to become leprosy-free by 2030. According to Rahman, dedicated community workers like Sandhya Mandal are the key to realizing the zero-leprosy status.

“Identifying a new patient is one thing; convincing them to see a doctor is entirely different. It takes very different level of skills,” he adds.

Providing counseling services

Mandal throws a little light on that skill: every time she finds a villager with a suspicious white patch with numbness, she tells him that it is a skin disease that needs urgent medical attention. “I never tell him it’s leprosy because, only a doctor can declare that after a test and also, if I spoke of leprosy, it would shock the person as everyone is still afraid of the disease,” Mandal reveals.

Mandal also counsels and provides emotional support to the person after a doctor has confirmed his or her leprosy. “Women are more scared than men because they feel their husbands will abandon them if they find out about their sickness. They are also scared of how their community would react. I tell them that they must tell their husbands but explain that its curable. To the neighbours, they can say it is a skin disease. I hold their hands, spend time with them. It calms them and it also makes them feel confident,” she tells IPS.

Listening to the prime minister has been an inspiring experience, Mandal says. At present there are not enough community health workers on leprosy. For example, in her own NGO, there are just two health workers. So, to achieve zero-leprosy in the next 10 years, Bangladesh would need many more community health workers, she says. Equipping the field workers at the rural NGOs with a motorbike would also help, as transportation remains a huge challenge in the villages. If these gaps are plugged, there is no reason why Bangladesh could not be leprosy-free, she says.
For those doubting her work, Mandal now has an answer: “Even the prime minister has shown an interest in leprosy, in our collective work. If anyone still doesn’t know why I work on leprosy for such long hours, they can ask the prime minister!”

The Nippon Foundation and the Sasakawa Health Foundation of Japan organized a national conference on leprosy in Dhaka on December 11 under the theme “ZeRo leprosy initiative”.

 

Nippon Foundation Announces US$ 2m Support for the Education of Rohingya Children in Bangladesh

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Chairman of The Nippon Foundation Yohei Sasakawa and BRAC Executive Director Asif Saleh announcing $2 million partnership. Credit: Rafiqul Islam / IPS

DHAKA, Bangladesh, Dec 11 2019 (IPS) – In the light of limited access to education for displaced Rohingya children, the Nippon Foundation has announced US$ 2 million support to BRAC to launch a project to ensure educational facilities to both Rohingya and local community children.

The Nippon Foundation made the announcement at a press conference at the BRAC Centre in Dhaka, which was attended by Nippon Foundation chairman Yohei Sasakawa and BRAC Executive Director Asif Saleh.

Under the US$ two million project, BRAC will build 50 steel-structured two-storey learning centres at Rohingya camps in Cox’s Bazar to provide an educational facility for Rohingya children. This project aims to provide educational access to 8,000 Rohingya children aged between 4 and 14 years. The Nippon Foundation is also supporting BRAC to open and operationalize 100 pre-primary centres for 3,000 host community children aged between 5 and 6 years through this funding.

Learning centres will educate Rohingya children

The project will ensure education access of Rohingya children to incoming children and existing children at the newly constructed learning centres.

As the host community in Ukhya, Teknaf and Ramuupazila of Cox’s Bazar are under significant stress. The project targets 3,000 host community children aged 5-6 years to get pre-primary education from BRAC-operated learning centres to prepare them for primary education. Engagement with parents, as well as the broader community, will be prioritised to select the location of centres, which will be established on the community premises.

Providing humanitarian support

The chairman of The Nippon Foundation Yohei Sasakawa said he visited the Rohingya camps in Cox’s Bazar to personally witness the reality there. “When I was there, I found the situation is much more serious.

“I have seen the refugee camps from the Myanmar side and Bangladesh side as well. And as a result of that, I actually saw, on my own eyes, how difficult the situation is. And under such a different situation, the Bangladesh government is trying to provide humanitarian aid (to the displaced Rohingyas),” he said.

Chairman of The Nippon Foundation Yohei Sasakawa and BRAC Executive Director Asif Saleh. Credit: Rafiqul Islam / IPS

Sasakawa, who is also a World Health Organization (WHO) Goodwill Ambassador, said given the circumstances, women and children are the most vulnerable in conflict-prone areas across the world and “that is why we need to provide support to women and children”. “With the partnership with BRAC, we will be able to provide more humanitarian support,” he added.

Regarding the long-standing Rohingya crisis, he said: “I hope the Rohingya problem will be resolved soon and the refugee camps (set up in Bangladesh) will not be permanent”. Bangladesh is hosting more than one million Rohingya refugees.

In August of 2017, a small group of Rohingya militants launched an attack against local police forces in Myanmar. This led to clashes between the Rohingya and the non-Rohingya population, Buddhist monks and police. This led to mass killings, abuses and abductions and s ost of the Rohingya fled to Bangladesh where the refugees now live in camps where they receive essential assistance and basic medical care

(http://www.ipsnews.net/2019/01/the-rohingya-the-forgotten-genocide-of-our-time/.

Promoting education to local and Rohingya children

BRAC Executive Director Asif Saleh said about 55 percent of the displaced Rohingya people staying in Cox’s Bazar are children and they have very limited access to education.

Apart from facilitating education to the Rohingya children, he said this project will provide support to 3,000 children of the host community as they are also very vulnerable and have limited access to education. “Our vision is to promote the facility to the poor and those who are still lagging behind,” he added.

Saleh said the support of the Nippon Foundation and the Japanese government are very important for Bangladesh, stating: “We always welcome such support”.

The Nippon Foundation has been working in Bangladesh since 1971. Its activities were focused on supporting health, education, human resource development and support for people with disabilities. These include, for example, supporting flood or cyclone victims, providing anti-leprosy drugs, scholarship programs, prevention of the cholera epidemic and supporting projects for relief and the rehabilitation of refugees in Bangladesh.

The Nippon Foundation, a Japanese private, non-profit grant-making organisation established in 1962, has decided to further support those projects in Bangladesh for basic human needs, including education and learning opportunities.

BRAC is a leading development organisation in Bangladesh dedicated to alleviating poverty by empowering the poor to bring about change in their own lives in Bangladesh.

The Nippon Foundation and the Sasakawa Health Foundation of Japan organized a national conference on leprosy in Dhaka on December 11 under the theme “ZeRo leprosy initiative”.

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Bangladesh Can Be Leprosy-Free by 2030 Says Leprosy Activist

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DHAKA, Bangladesh, Dec 11 2019 (IPS) – Despite its efforts to eliminate leprosy as a public health threat, Bangladesh’s leprosy burden ranks fourth-highest in the world. Four thousand new cases are detected annually – an average of 11 to 12 cases per day over the last 10 years.

Leprosy issues have taken centre stage at the National Conference 2019 on Zero Leprosy Initiatives by 2030 in Dhaka Bangladesh. The country’s National Leprosy Programme, in collaboration with the Nippon Foundation and Sasakawa Health Foundation in Japan believes its key that every person with leprosy has access to the right medicines, diagnosed and treated in a timely fashion.

Akthar Ali is the Project Co-ordinator of the Missionary Sisters of Mary Immaculate (with the Pontifical Institute for Foreign Missions (PIME) Sisters) in Khulna in the south of Bangladesh and believes the country can be leprosy-free by 2030.

Crystal Orderson spoke Ali on the sidelines of the National Conference in Dhaka, Bangladesh.

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Bangladesh Can Be Leprosy-Free Before 2030 Prime Minister Tells National Zero Leprosy Conference

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Mr Yohei Sasakawa, chairman of the Nippon Foundation and Sasakawa Health Foundation and WHO Goodwill ambassador. Credit : Crystal Orderson / IPS

DHAKA, Bangladesh, Dec 11 2019 (IPS) – Leprosy is not a curse but should be detected and treated early, Bangladeshi Prime Minister, Sheikh Hasina, has told delegates at a gathering in her country’s capital to discuss the elimination of the disease.

“In the past, it was thought that leprosy was a curse. But it was not a curse at all. The disease is caused by bacteria (Mycobacterium Leprae). We should fight it through research,” Hasina said, adding that the discrimination against leprosy sufferers should end. She called upon all concerned to work together so that Bangladesh could be leprosy-free before 2030.

Prime Minister Hasina, who spoke in Bengali at the National Conference 2019 on Zero Leprosy Initiatives by 2030, also committed her government to proper treatment for leprosy sufferers.

To achieve these targets, the country’s National Leprosy Programme, in collaboration with the Nippon Foundation and Sasakawa Health Foundation in Japan, has worked tirelessly to convene the conference, bringing together hundreds of health workers, medical professionals and district officers to discuss the issue under the theme “Zero Leprosy Initiatives”.

Certain areas in Bangladesh are particularly leprosy-prone, including its northern region and the Chittagong Hill Tracts, Prime Minister Hasina said.

Sheikh Hasina, Prime Minister of Bangladesh.

“If we can give special focus to these areas, I do believe it would be quite possible to declare Bangladesh a leprosy-free country before 2030,” she added.

“Leprosy patients must be considered on humanitarian grounds. If we all take a little responsibility in this regard, they will get recovery from this disease … I think we can do so,” Prime Minister Hasina said.

Distribute drugs free of cost

The prime minister said many Bangladeshi pharmaceutical companies export medicines, and she called upon these companies to produce drugs for leprosy locally and distribute those among leprosy patients free of charge.

The prime minister also warned that no-one could fire leprosy patients from their jobs but rather should arrange treatment for them.

End stigma and discrimination

The Chairman of the Nippon Foundation and World Health Organization (WHO) Goodwill Ambassador for Leprosy Elimination, Yohei Sasakawa, says leprosy is not only a medical issue but also a social issue “because of the stigma and discrimination that the disease attracts”.

He said: “We have an effective cure for leprosy, and it is essential that every person with the disease has access to the cure and is diagnosed and treated in a timely fashion. With timely diagnosis and treatment, a patient can be cured without disability.

“This conference presents us with an opportunity to re-focus efforts on leprosy and aim at an ambitious target: zero leprosy by 2030,” Mr Sasakawa added.

The WHO Representative to Bangladesh, Dr Bardan Jung Rana, told delegates that leprosy has caused immense human suffering when those affected remained untreated.

“With the aim of a leprosy-free world, WHO is committed to providing technical and strategic guidance, strengthening country-level capacity and delivering interventions through appropriate technology at affordable costs,” said Dr Jung Rana.

Leprosy a treatable disease

Leprosy is a chronic infectious disease affecting mainly the skin, the peripheral nerves, the mucosa of the upper respiratory tract, and the eyes. Leprosy is curable and treatment has been available through the WHO free of charge to all patients worldwide since 1995.

The history of leprosy dates back centuries in Bangladesh. Different Christian missionary organizations used to provide leprosy services in various high endemic areas in the country. In 1965 the government sector implemented leprosy services through three public hospitals.

Eliminating leprosy in Bangladesh

Despite its efforts to eliminate leprosy as a public health threat, Bangladesh’s leprosy burden ranks fourth-highest in the world. Four thousand new cases are detected annually – an average of 11 to 12 cases per day over the last 10 years. Every year an estimated 3000 leprosy sufferers are affected by complications that require specialized treatment in hospital.

Although the the number of leprosy cases are declining, more than one-third of leprosy patients are facing the threat of permanent and progressive physical and social disability. The human suffering resulting from the physical deformities and related social problems are immense.

Activists and community workers in Bangladesh welcomed the government’s commitment to ensure proper treatment for leprosy sufferers.

Delegates at National Conference 2019 Zero Leprosy Initiative by 2030, Dr Sr Roberta Pignone, PIME sisters (middle). Credit : Crystal Orderson / IPS

Stop pushing Leprosy in a corner

Dr Sr Roberta Pignone, Project Director of the Missionary Sisters of Mary Immaculate (with the Pontifical Institute for Foreign Missions (PIME) Sisters) in Khulna in the south of Bangladesh, told IPS: “It is good to listen to the prime minister and health officials and hear what they say they will do in the future to eliminate leprosy.” She added: “Leprosy is always pushed in a corner. It is good to hear that the government is aware of the disease. If the prime minister speaks to the nation, they will listen.”

The PIME Sisters have been working with leprosy since the mission opened its doors in 1986. “Sometimes leprosy is neglected and this conference shows that the government is committed to deal with leprosy,” says Dr Sr Pignone. “It is time to accept that leprosy is in the country and to deal with the situation.”

The Nippon Foundation and the Sasakawa Health Foundation of Japan organized a national conference on leprosy in Dhaka on December 11 under the theme “ZeRo leprosy initiative”.