Ending NTDs in Nepal through Women-Led WASH

Neglected tropical diseases (NTDs) persist in places like Nepal where many people living in poverty do not have adequate water, sanitation and hygiene (WASH).

This contributes to the spread of NTDs like leprosy, which can cause disabilities and drive people deeper into poverty.  The WASH programme at ALM is stopping this vicious cycle with:

• WAter: providing a safe water supply for consumption and improving water quality.
• Sanitation: improving sanitation which reduces the contamination of the environment.
• Hygiene: teaching better personal hygiene practices and providing health education.

Empowering Women

Women’s groups in Nepal are being trained on improving water, sanitation and hygiene.

What’s more, this project is improving WASH and stopping disease by empowering women. Women have a higher stake in the improvement of water and sanitation services and in sustaining these facilities, yet women rarely have a voice in these decisions. Educating and empowering women plays an important role in overall development. It also improves their quality-of-life and status within their family and community. This women-led WASH project:

• Reduces long walks to carry water, long waits for a turn at a water source and carrying heavy water containers.
• Ends the need to wait until dark to defecate in the open fields, and reduces the risk of harassment and assault during nighttime walks to and from the fields.
• Increases school attendance by girls during menstruation because they now have safe and separate sanitation facilities.

Transforming Lives

Hand-washing stations in schools help kids stay healthy.

The WASH project is working directly with 600 women across 30 villages, transforming the lives of 22,500 people, including 5,000 school children.

• Nine schools have received information on WASH and NTDs.
• Three of five hand-washing stations in schools are completed and two are nearing completion.
• Three of five key water points are protected through infrastructure development and two are nearing completion.
• 40 community leaders are trained on WASH and NTDs.
• Two out of five model community toilets and hand-washing stations are complete and three are nearly complete.

Reposted with permission from the American Leprosy Missions – originally published in July 2019 here.

Josiane’s Story

Josiane lives with her mother Josephine in a little grass hut with a beautiful view of the hills near Bukavu, Eastern Congo. She welcomes us with a smile and our visit creates quite a stir among the neighbours. They don’t get visitors here very often.

“I was born in 1970 on this hill,” Josiane tells us. “There was never any talk about my going to school when I was a little girl but I was expected to help with the housework. When I was 17 I started to get spots on my skin and I wondered what that could be.” The spots were numb, and Josiane soon discovered that her hands and feet were affected. She also got grave ulcers. She went to two different hospitals but didn’t receive any help.

“Six years ago I finally got help and received surgical treatment for my ulcers,” she continues. “However, my hands are not okay, several fingers are damaged, and my toes have disappeared.”

At first, Josiane experienced stigma from her community. “When the signs of leprosy became visible, my neighbours disappeared. Nobody said hello to me and they avoided meeting me.” Thanks to the visits and awareness raising campaigns of TLM Congo however, Josiane and her mother are now accepted in the village and no longer shunned by their neighbours. “They even bring their children for me to look after, when they are out in the fields working. This child belongs to a neighbour,” Josiane says, pointing to a little child asleep on the floor. “Now my neighbours have learned that I am not dangerous or contagious, so they ask me for help with babysitting.”

Josiane was married and had 11 children, but sadly, most of them died at childbirth. Her husband drove her away when the signs of leprosy became apparent. She then went back to her mother, who also had leprosy, and today they share the hut. Josiane’s one surviving child, a son, lives in Bukavu and sometimes comes home to visit. He is her pride and joy. Josiane has a deep dream and longing for her own house with room enough for her son.

She also has other dreams for the future: “I would like to set up a simple little shop. Imagine being able to sell rice, soap, palm oil, salt and a few other necessities.”

Every Sunday Josiane and her mother go to the church that they belong to, even though it is a long walk. They have always been welcomed into the church and they really appreciate the fellowship there.

Reposted with permission from The Leprosy Mission International – originally published in July 2019 here.

Leprosy on the CRPD Committee’s agenda

On 26 August 2019 Geoff Warne, ILEP CEO, addressed the Committee at its opening session.

He thanked them for so positively including the disabling effects of leprosy within the scope of their work. Even when there are no visible impairments, the mere label of leprosy so often results in social exclusion and loss of rights.

On 27 August he and Dr Zaw Moe Aung (The Leprosy Mission) spoke about leprosy and human rights in Myanmar. During the coming weeks, the Committee will consider ILEP’s written and oral submissions on five other countries – India, Mexico, Venezuela, Lao and Singapore. All are important but the highest priority is urging the Committee to keep the pressure on India to repeal or amend all of its 108 discriminatory laws and introduce positive legislation that supports inclusion of people affected by leprosy.

Zero leprosy country review: Nepal

At the invitation of the Ministry of Health, the Global Partnership for Zero Leprosy (GPZL) and the World Health Organization (WHO) conducted a joint review of the leprosy programme in Nepal in July.

This was done in close collaboration with ILEP and other NGOs and organisations of persons affected by leprosy. The intention was to assess the programme’s current status and define key priorities. A ten-year Zero Leprosy Roadmap for Nepal was developed by a broad range of stakeholders and presented to the Minister of Health and other senior officials of the Health Ministry. Additionally, the officials promised to set in motion the abolishment of the only remaining law in Nepal that discriminates against persons affected by leprosy.This was the first pilot of GPZL’s country model, and there was much to be learned from the experience. Findings will be presented at the International Leprosy Congress in September. When the official report is produced, we will let you know.

The GPZL research reports are now online

The GPZL’s Research Agenda Working Group analysed leprosy research and developed priorities in the key areas that are expected to accelerate progress towards zero leprosy. This completed body of work now forms globally agreed research agenda for leprosy. The reports from the eight sub-groups are now available on their website. Edited versions will be published in the Leprosy Review in September 2019.

The eight sub-groups worked through 2018 and into 2019 to identify research gaps and propose zero leprosy priorities in each of their topic areas, which included Post-Exposure Prophylaxis (PEP), disability as well as many others. This endeavour included more than 150 scientists and researchers who were directly involved. The larger aim has been to align the leprosy community around key research priorities so that they can provide a scientific framework for the resource mobilisation (the 100&Change proposal for example) and joint work essential to achieving the goal of zero leprosy.

MacArthur Foundation proposal final submission

A proposal for the 100&Change, a MacArthur Foundation competition for US $100 million, was submitted on August 6.

MacArthur’s goal is to use its investments to take on problems that cannot be solved any other way than through a huge infusion of funding over a short period of time. Results needed to be framed within a five- and 10-year period. The proposal included PEP and anti-stigma initiatives. The coordinating lead was the Task Force for Global Health. The Leprosy Mission International and interested ILEP Members led the PEP section, and IDEA (with additional guidance from Dr Alice Cruz) led the anti-stigma section. The development of this proposal raised several interesting questions including what is the Global Partnership for Zero Leprosy’s timeline for getting to zero leprosy and how can this be quantified for potential donors and partners. This was a great example of what can happen when ILEP Members and stakeholders collaborate.

NTD Roadmap 2021-2030 to incorporate consequences of leprosy

ILEP, in association with the NNN (NGO NTDs Network), has been advocating to make sure that the new NTDs Roadmap fully incorporates the ongoing consequences of NTDs like leprosy.

While we recognise the enthusiasm to see a 90% reduction in the number of people suffering from NTDs worldwide, we need to ensure that consequences like ongoing disease management, disability and social exclusion are not overlooked.

Paul Saunderson (ILEP Technical Commission) and Geoff Warne (ILEP CEO) have also collated input from ILEP Members into a proposed leprosy-specific section of the Roadmap. We strongly support Erwin Cooreman (Head of WHO Global Leprosy Programme) in working to ensure that the result is a credible and usable Roadmap for leprosy, as well as all other NTDs, and that the new Global Leprosy Strategy fully synchronises with it.

Updated list of discriminatory laws

In order to track progress towards the goal of Zero Discrimination and Stigma, ILEP has reviewed and updated the list of discriminatory laws found worldwide. 

The current list shows a total of 139 laws that discriminate against people affected by leprosy in 24 countries. Most of the laws on the list (37%) segregate and isolate people affected by leprosy from their communities and even their families. India has taken significant steps in restoring the fundamental rights of people affected by leprosy, as several laws have been repealed during the past years — four in 2016, six in 2018 and two in 2019.

However, there are still 108 laws (44% of the laws worldwide) and regulations in India discriminating against people affected by leprosy. The full list of discriminatory laws can be found here.

ILEP hosts a booth at the ILC

From September 11 to 13, ILEP will be at its booth at the International Leprosy Congress (ILC). We hope that you’ll come and visit us!

ILEP would love to showcase the breadth of work that is going on in the Membership so if you have materials that you would like to add to the table, please let us know. Drop off for materials will be at the Philippine International Convention Center (PICC) on September 10 from 17:00 to 19:00.

Other organisations with booths at the ILC include: Global Partnership for Zero Leprosy (GPZL); The Leprosy Mission; Lepra; InfoLep; Leprosy Research Initiative; and the International Association for Dignity, Integration and Economic Advancement (IDEA).

Reduce Stigma and Improve Mental Wellbeing in NTDs

Guides on Health-Related Stigma and Mental Wellbeing

Health and social welfare departments, non-governmental organisations and other agencies need help to better understand what stigma is and what can be done to reduce its impact.

Responding to this need, ILEP and the Neglected Tropical Disease NGO Network (NNN) will shortly launch Guides on Health-Related Stigma and Mental Wellbeing.

Read more about the Guides here.