Urgent Need to Replace Competition with Cooperation in the Aral Sea Basin

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Stefanos Xenarios is a Professor at Nazarbaev University, Kazakhstan and co-editor-in-chief of the Central Asian Journal of Water Research; Iskandar Abdullaev is Deputy Director, CAREC Institute, China and Vladimir Smakhtin is Director, UN University Institute for Water, Environment and Health, Canada and series editor of the Routledge publishers’ Earthscan Series on Major River Basins of the World, in which the Aral Sea Basin Book is the latest addition.

The Aral Sea Basin, defined in red, straddles six countries in Central Asia. See detailed map in full at http://bit.ly/2BQPpRm. Credit: UNU-INWEH

NUR-SULTAN CITY, Kazakhstan, Nov 7 2019 (IPS) – The water resources in Central Asia’s Aral Sea Basin support the lives and livelihoods of about 70 million people — a population greater than Thailand, France, or South Africa.

And unless well-funded and coordinated joint efforts are stepped up, with competition replaced by cooperation, ongoing over-withdrawals compounded by climate change will cause dangerous water shortages in this huge, highly complex watershed spanning six nations: Afghanistan, Kazakhstan, Kyrgyzstan, Tajikistan, Turkmenistan, and Uzbekistan.

That’s the key message of a new book co-authored by 57 regional and international experts from 14 countries and the United Nations, who spent years examining a suite of challenges in the Aral Sea Basin.

The new book assembles the views of nearly all major regional and international experts on the great challenges faced in the Aral Sea Basin. They include three co-authors from the UN University’s Institute for Water, Environment and Health, in Hamilton, Canada.

And almost half of the authors are based in Central Asia, creating a unique blend of regional and international voices and expertise on these critical issues.

The Basin’s two major rivers, the Amu Darya and Syr Darya, discharge now only about 10% of what flowed into the Aral Sea until the 1960s, shrinking the sea by more than 80 percent — “one of the world’s most severe and emblematic environmental disasters.”

Freshwater is key to food, energy, environmental security and social stability among the six Aral Basin countries. And given the countries’ prospective economic and population growth, reliance on water resources will increase, compelling cooperation in sharing benefits and reducing costs.

Intensive, wasteful irrigated farming when the nations were part of the Soviet Union was the main cause of the Aral Sea drying up and irrigation continues to consume about 90 percent of the total water withdrawal in the Basin, with agriculture contributing from 10 to 45 percent of GDP, and 20 to 50 percent of rural employment.

Most irrigation, hydropower and other water-related infrastructural systems and facilities are in transition, a blend today of past and present. Unfortunately, the existing observational meteorological and hydrological networks in the Basin, which declined in the 1990s when the Soviet period ended, are insufficient to support informed water management, and regional water data sharing is suboptimal.

Degradation of land and water are among the major hindrances to sustainable development in the region, with land degradation alone estimated to cost about US$3 billion of losses in ecosystem services annually.

There has been uneven progress across the countries on the Sustainable Development Goals (SDGs), and particularly Goal 6 (Clean Water and Sanitation), with contrasting progress also between urban and rural populations within each nation, most particularly Afghanistan.

The new book suggests a number of interventions and initiatives to end and reverse deterioration of the Aral Basin. For example, if existing large hydropower projects were managed in a collaborative manner, they can bring all countries multiple benefits, including improved reliability of supply and availability of water for agriculture, domestic use and electricity generation.

Monitoring of snow and glaciers in high altitude mountain areas, as well as permafrost, is essential for sound estimates of water availability and water-related hazards. Such systems need to be re-installed.

Also needed: institutions for decentralized management of natural resources, such as water user associations to promote cooperative, sustainable, intra-regional management between upstream and downstream countries and integrated rural development approaches.

Existing regional frameworks must either be reformed or replaced by new mechanisms of cooperation in order to successfully translate political will into highly effective, integrated regional water management.

Reforming the water sector, however, goes well beyond new policies and initiatives, updating the legislative framework, and building new institutions. A key challenge is to achieve continuous, strong, high-level political engagement throughout the Basin countries, the active participation of stakeholders, and technical and financial support.

The Aral Basin’s many water-related issues must be addressed jointly by all involved states within the concept that water, energy, and food issues represent a critical, interlinked nexus of needs.

Major geopolitical and economic development interests are placing increasing pressure on countries of the Basin to end resource competition and find a way to closer cooperation and effective pursuit of their shared interests.

 

Red Alert for Blue Planet and Small Island States

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Farhana Haque Rahman is Senior Vice President of IPS Inter Press Service; a journalist and communications expert, she is a former senior official of the United Nations Food and Agriculture Organization and the International Fund for Agricultural Development.

The Pacific island is one of the countries worst affected by sea-level rise. Credit: UNICEF

ROME, Oct 31 2019 (IPS) – Barely a week passes without alarming news of the most recent scientific research into the global climate crisis compounding a growing sense of urgency, particularly the impact on small island states from rising sea levels and extreme weather.

Latest findings suggest that several hundred million more people than previously thought are at risk of coastal flooding due to climate change. Climate Central, a non-profit research and news organisation, found data used in past calculations overstated the elevation of many low-lying coastal communities.

And for the people of the Bahamas who had just endured Hurricane Dorian, the most intense tropical cyclone on record to hit their islands, it came as little surprise when the UN Intergovernmental Panel on Climate Change (IPCC) soon after released its landmark special report on the planet’s oceans and frozen regions, warning of “multiple climate-related hazards” for coastal regions.

“The ocean is warmer, more acidic and less productive,” the IPCC report stated.

The “Blue Pacific” concept sees the island states establishing themselves as “large ocean states” and guardians of the region rather than “small island states”

Oceans are absorbing heat twice as fast as just two decades ago, with hundreds of billions of tonnes of melting ice raising sea levels at an average rate of 3.6 millimetres a year, more than twice as fast as during the last century.

If greenhouse gas emissions “continue to increase strongly”, the IPCC report said, then levels could rise more than a metre by 2100.

Some island states in the Pacific face becoming uninhabitable. As UN Secretary-General Antonio Guterres noted while visiting Tuvalu, the sea level rise in some Pacific countries is four times greater than the world average, posing “an existential threat” to several island states.

Against this background the UN COP25 climate change summit scheduled to be held in Santiago in December had been dubbed the Blue COP, with expectations of a focus on the oceans and commitments of aid to poorer nations most at risk. So it comes as a serious blow that President Sebastian Pinera has just announced that Chile is calling off its hosting of COP25 because of mass anti-government protests rocking the country.

While the UN anxiously looks for an alternative venue (and Santiago had been the second choice after Brazil’s newly elected president, Jair Bolsonaro, pulled out of hosting it), the small island states of the Pacific will be making their voices heard as they seek to confirm themselves in the role of custodians of the world’s largest region.

It is an existential struggle but it is not a blame game however.

As Micronesia’s President David Panuelo declared last week in The Diplomat: “Rather than point fingers, we must all point the way toward solutions.”

“No single country created this problem, and certainly a small country like ours is bearing far greater responsibility for the solution than we ever contributed to the crisis in the first place. But we sit shoulder to shoulder in a coalition which has set a goal of growing economies while achieving 30 percent marine protection globally,” he wrote in a plea for action to save the oceans.

“Everyone must do more when garbage patches larger than entire countries float in the Pacific, and rising carbon dioxide levels increase ocean acidity and devastate coral reefs and marine life.”

The Pacific Community, the principal scientific and technical organisation in the region and founded as the SPC in 1947, counts 22 Pacific island countries and territories among its members who see themselves as the “tip of the spear” in terms of the impacts of climate change and their efforts to adapt.

SPC has recently established the Pacific Community Centre for Ocean Science (PCCOS) to provide the framework to “focus its scientific and technical assistance on providing solutions that will build, sustain, and drive blue economies in Pacific Island countries and territories” and support SDG 14 of conserving and sustainably using oceans and marine resources.

The SPC’s new and growing Pacific Data Hub is a public resource of data and publications on the Pacific across key sectors, from education and human rights to oceans and geoscience.

Such initiatives reflect how Pacific Island states have grown more assertive in their diplomacy, becoming more active in global multilateral forums and using their voices and votes for increased leverage rather than the old reliance on support from Australia and New Zealand.

The “Blue Pacific” concept sees the island states establishing themselves as “large ocean states” and guardians of the region rather than “small island states”. As stewards of the Pacific with their cultural identity shaped by the ocean, the Blue Pacific framework seeks to establish leadership on issues, with smart policies backed by scientific expertise and data.

As Micronesia’s president has reminded us, the climate crisis is neither abstract nor “tomorrow’s faraway challenge”. It is happening now and as the IPCC’s special report on the oceans and cryosphere warned in September the crisis is gathering speed, as seen in the recent acceleration of sea level rise.

In Antarctica the rate of ice loss tripled in the decade 2007-2016. May and August in 2019 were the warmest on record for the Arctic while this year saw the summer minimum extent of sea ice reaching a joint-second lowest in 40 years of satellite records.

As summarised by Carbon Brief, the IPCC warns that this accelerating ice loss, and the more rapid sea level rises it causes, will continue to gather pace over this century regardless of whether greenhouse gas emissions are reduced. The “likely” maximum rise of 1.1 metres by 2100 is some 10cm above the top-end estimate from its previous estimate, while a rise of 2 metres cannot be ruled out.

Such warnings were intended to provide input at COP25 for world leaders who face mounting calls to adopt more ambitious goals for carbon emission cuts. Those negotiations will not be happening in December in Santiago after all. An alternative must be found urgently.

 

Hiring for Inclusion

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As companies begin to focus on hiring people with disabilities, we need to shape how they think and act on this interest.

Courtesy: United Nations

HYDERABAD, TELANGANA, India, Sep 20 2019 (IPS) – As companies begin to focus on hiring people with disabilities, we need to shape how they think and act on this interest.

In the first decade of this century, Andhra Pradesh had several self-help groups (SHGs)–women who were saving, borrowing, and generating livelihood opportunities for themselves as well as their communities.

As these groups grew, the government began to notice that the aspirations of children were different from their SHG-member mothers, who were mostly marginal farmers or weavers. The state felt that they needed to do something to fulfil these aspirations and from this was born the Employment Generation and Marketing Mission (EGMM)–a skilling mission under the Department of Rural Development in undivided Andhra Pradesh.

EGMM started in 2004 with a pilot–a Rural Retail Academy was set up in Warangal for youth who were 10th and 12th standard dropouts; local school teachers were taught to train them on customer-facing skills, and after six months they were ready to be placed.

Higher efficiencies, near-zero errors in an industry where margins are small–opened up almost 50,000 cashiering jobs for disabled youth in the retail sector.

Kishore Biyani of the Future Group was the first one to hire these young people, and him doing so changed the way India looked at rural youth. It made people realise that: a) you didn’t need graduates with degrees for customer service, and b) rural youth, if skilled right, could get formal private sector jobs.

Prior to the establishment of the EGMM, government skilling programmes didn’t think of job placement as something they were responsible for. All of them did skilling for skilling’s sake. Now placement has become the norm in every skilling programme offered by either the government or the private sector.

EGMM was also able to demonstrate innovation at scale. However, it’s relatively easy to achieve scale when you are sitting inside the government. When I thought of what to focus on after rural youth, it was important for me to enter a space where there wasn’t an existing model for scale, and to prove that it could be done outside of the government as well. Disability was that space.

Moving to disability

The statistics around disability are alarming–80 percent of the world’s disability population is in developing countries like India. Despite this, a decade ago, little was being done about it.

Cities with a booming IT industry like Bangalore and Delhi, had organisations training and placing disabled people in jobs, but this was limited to 30 people a year at best. And, most of them were urban and educated. However, 69 percent of the disabled youth in India live in the villages–and at the time, in 2012, nobody was focusing on less-educated rural youth with disability. 

There were many challenges

When we went to the villages, we faced several obstacles:

  • Getting youth to join: Disabled youth who lived in rural areas were doubly disadvantaged: they were cut off from the job market because of their rural location, and they (and their families) didn’t believe that they could ever get a job.
  • Finding trainers: We were also faced with a shortage of people who could train these youth. Disability is one word but within that word there are different kinds of disability–speech impaired, visually challenged, physical disabilities, and so on–and each one of them has different needs. Even when we did find trainers who could work with disabled youth–sign language instructors, for example–they were ill-equipped to train in the short-term training formats that we had developed.
  • Providing them job opportunities: Companies came with a lot of mindsets. They would ask us “Can you give us youth who look like you and me? Will it be expensive to hire and manage them? Will my other employees have a problem if I hire your youth?”

There is a gap in the urban disabled space as well

As we started working with the corporates, some multinational companies started asking us, “Where are the youth with English, the ones who are educated?” The perception is that if the disabled youth are educated, they will perhaps get jobs on their own.

However, in most cases, educated youth with disability have low skill levels. They qualify as engineers, have an engineering certificate and so their aspirations are to get into the well-known global and Indian tech companies. However, their technical knowledge is poor since colleges don’t have special educators to guide them.

The perception is that if the disabled youth are educated, they will perhaps get jobs on their own. However, in most cases, educated youth with disability have low skill levels. Picture courtesy: Rawpixel

The perception is that if the disabled youth are educated, they will perhaps get jobs on their own. However, in most cases, educated youth with disability have low skill levels. Picture courtesy: Rawpixel

The market is beginning to think about disability more actively

We are hearing companies talk about focusing on disability. So, while the timing is right, we need to shape how companies think and act on their interest.

Here are a few approaches that skilling organisations that work with disabled youth can adopt to ensure that larger numbers of corporates hire and retain these young people and that they do it in the right manner.

1. Try to place youth with disability in customer-facing roles

When they have to interact with customers, awareness about the issue of disability goes up automatically; you don’t have to work on that separately. We piloted this hypothesis by placing a speech- and hearing-impaired individual in a cashier’s job, with some simple workplace adaptations.

Three months later the retailer ran a survey to ask their customers for feedback and 95 percent of the respondents said that having ‘silent’ cashier had led to faster service. This insight–higher efficiencies, near-zero errors in an industry where margins are small–opened up almost 50,000 cashiering jobs for disabled youth in the retail sector.

2. Create a sensitive ecosphere

Hiring youth with disabilities is not just about matching profiles to jobs. We do sensitisation workshops, low cost adaptations, accessibility audits, going as far as to sync companies’ existing software to ensure that hired youth are productive. Otherwise, it merely reiterates the myth that youth with disabilities cannot work.

3. Build up jobs sector by sector

We did this with the automotive industry. We started with one company–Valeo–and hardwired all our best practices over there. More importantly, their HR director and I started talking about these innovations and the value provided by these youth at conferences and forums. As a result, 15 more auto companies started hiring disabled youth.

4. Teach portable skills and not specific job skills

Typically, skilling organisations give youth job-specific training–like say a three-day training in folding clothes. However, the danger with this approach is that if the folding clothes process stops, so does their job. It is important therefore, irrespective of the sector, to teach English, communications, and life skills–skills that they can take across jobs. This allows them to be mobile across jobs and capitalise on the opportunities available.

5. Encourage companies to measure impact

An executive from a multinational company that we at Youth4Jobs work with said that our alumni manage 75 forms a day versus their average of 45-50. Once companies experience the business case and see the results, their senior executives become champions for the programmes.

6. Prepare companies to be ready for changes in the law

It is likely that one day, a particular state might suddenly decide to make hiring of disabled youth mandatory in sync with the Right to PwD Act 2016 which speaks to the right of disabled to education and employment. And if that happens, other states will follow. It is important that companies are ready for it when it happens.

Meera Shenoy is the founder of Youth4Jobs, where she works on skilling young people with disabilities. She has been at the forefront of job-linked skilling for rural youth, tribal youth, and now youth with disabilities, at a scalable level. She was previously Executive Director, Employment Generation and Marketing Mission (EGMM), the first state government skilling mission. Meera has also consulted with the World Bank and the UNDP.

This story was originally published by India Development Review (IDR)

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Calls for Reform, Research and Reorganisation in Leprosy Healthcare

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The 20th International Leprosy Congress (ILC) is being held Sept. 10 to 13 in Manila, Philippines. The conference is hosted every three years and was last held in China in 2016. Credit: Stella Paul/IPS

MANILA, Sep 12 2019 (IPS) – Rachna Kumari of Munger in Eastern India’s Bihar state is not yet 30. But she’s already been married at 18, abandoned by her husband after she was diagnosed with leprosy and become an award-winning advocate of the disease. She has traversed a long road. And this week she undertook another step in her journey to fly to Manila, Philippines, as a delegate at the 20th International Leprosy Congress (ILC).

The grassroots leader, who is employed by the International Leprosy Elimination Partnership (ILEP), has also previously traveled to Ethiopia and China to share stories about her life and her work.

Prior to attending the ILC yesterday Sept. 12, she participated in the Global Forum of People’s Organisations on Hansen’s Disease, an event co-organised by Japan’s  The Nippon Foundation (TNF) and Sasakawa Health Foundation (SHF). The global forum gave her valuable insights into the universal challenges of leprosy-affected and leprosy advocates such as stigma and lack of financial sustainability, Kumari said.

She said she also gained technical education and management skills, which she feels are crucial for success in advocacy.

She added that when she carries out her work in communities across Munger, she has no official identification to show many of the Hansen’s disease-affected persons she comes across, many of whom are weary of strangers as they continue to face discrimination and stigma.

This simple form of accreditation, Kumari said, played a huge role in advocacy against the disease.

“[In] my community, I have nothing to prove that I am an advocate, a knowledge builder. So, people doubt me, they don’t know if they [can] trust me. A simple document of identification can be a big step to build trust between a community worker and her community,” Kumari told IPS.

Maya Ranavare, who works as a treasurer in Association of People Affected by Leprosy (APAL), in western India’s Maharashtra state, says that partnerships among organisations must not remain in closed rooms but should instead result in collective action that reaches communities.

“There is a sense of competition among  people’s organisations. Instead, we must act collectively. Also, if it is a partnership, then there should not be duplicity. Tasks should be distributed evenly. If one organisation is doing mobilisation, other should work on technical education. This will increase everyone’s skill and ability,” Ranavare told IPS.

According to Dr Arturo Cunanan, the Chief Medical Officer of the Culion Sanitarium and General Hospital in the Philippines, there needs to be programmatic changes in the government public health system. Budgetary allocation, innovation, new research and sensitisation of healthcare workers are all needs of the hour.

“Leprosy elimination is now like a car that has run out of fuel. We need that fuel right now. The fuel is innovation. Take vaccination for example. Why is that even after centuries, we still don’t have a vaccination for universal application?

“Also, we need innovative, easier ways to diagnose leprosy. If you look at Tuberculosis, there are several ways to do a quick test and find out if a person has it. But for leprosy, we still have only clinical test. We need new tools, quicker ways and for all of that we need new investments in innovation, research,“ Cunanan told IPS.

The ILC started runs Sep 10 to 13. The congress will identify the priorities for a future course of action to end leprosy. Currently there are 200,000 new leprosy cases reported every year across the world, with 60 percent of those new cases originating in India.

According to the organisers, the congress will identify the priorities for the future course of action for achieving zero leprosy. The congress also emphasised the importance of partnerships and a new future partnership among the leprosy-affected people’s organisations has already started between HANDA – a Chinese NGO– and PERMATA, an NGO based in Indonesia.

HANDA, which has recently been recognised by the government of China for their skills in project management, finance management and organisational re-structuring, is set to share these crucial skills with PERMATA. 

“We will soon host a delegation from PERMATA in our Guanzhou office. They have a special interest in finance management and we are ready to share our expertise and experience in that area with them,” Sally Qi of HANDA told IPS.

SHF was instrumental in building this partnership and encouraged  both HANDA and PERMATA to start a dialogue on skill sharing, Qi added.

 

‘Conference Emphasises Need for Partnerships to Create a World Without Leprosy’

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Yohei Sasakawa, chair of The Nippon Foundation and World Health Organisation (WHO) Goodwill Ambassador for Leprosy Elimination, delivered a keynote address at the 20th International Leprosy Congress (ILC). Credit: Stella Paul/IPS

MANILA, Sep 11 2019 (IPS) – Forty years ago, Yohei Sasakawa saw his father moved to tears after meeting and witnessing the suffering of people affected by leprosy – also known as Hansen’s disease. Not only did the patients have a physical illness, but they also suffered from social exclusion and discrimination. It made the young Sasakawa vow to work for the elimination of leprosy from the world – just as his father had been doing.

Decades later, after visiting 120 countries and having meetings with countless policy makers and state leaders, Sasakawa – now the World Health Organisation (WHO) Goodwill Ambassador  for Leprosy Elimination – is delivering on his promise.

At the first day of the 20th International Leprosy Congress (ILC), being held in Manila, Philippines, the chairperson ofThe Nippon Foundation (TNF) called for activists, scholars and those affected the globe over, to rally behind the goal of a world free of  stigma, discrimination and violation of human rights of those affected by leprosy. The ILC, which ends Sep 13, is supported by TNF sister organisation the Sasakawa Health Foundation (SHF).

Sharing his experiences, he recalled how he, TNF and SHF lobbied the United Nations to recognise the elimination of stigma against leprosy-affected people as a human rights issue.

Sasakawa reminded delegates that it was a tough journey against several odds as policy makers and diplomats  showed little interest in the human rights of leprosy-affected people. He told the congress how during a 2003 U.N. Human Rights Council meeting in Geneva, only five members attended the event to discuss stigma as a human rights violation in a room that could accommodate 50.

Not one to give up, Sasakawa kept pursuing the issue until finally in December 2010 the U.N. General Assembly unanimously adopted the resolution on elimination of discrimination against persons affected by leprosy and their family members and accompanying principle and guidelines was passed.

“I believe the elimination has been an important milestone in my journey,” Sasakawa said.

But despite the U.N. resolution and various local laws at country level worldwide abolishing policies like segregation and isolation of the leprosy-affected, society still stigmatises and discriminates against Hansen’s disease patients as well those who work within the field, like health care workers etc.

He said one example of this remains is the classification of leprosy as a neglected tropical disease.

“I would like to express my opposition to leprosy being considered as one of the neglected tropical diseases. Leprosy has never been neglected even for a moment by both persons affected and by people who have worked hard for their betterment. In my opinion, this medical terminology feels like it is looking down on the patients and also shows a lack of respect towards those are fighting against leprosy today. Leprosy is an ongoing issue.”

However, Sasakawa also acknowledged that in other areas — such as the partnerships and networking — there has been great progress. The Global Partnership for Zero Leprosy network was a significant step forward.

“The  collaboration will greatly enhance our work towards achieving ‘Zero Leprosy,’” he said, adding that the strengthening of these partnerships, especially with the governments, was crucial to reach the common goal of a leprosy-free world.

“Whenever I go abroad, I always meet with the national leaders of the countries. We cannot solve the issue of leprosy without their understanding and support. Without their support, we cannot secure the budget for activities to eliminate leprosy and the associated discrimination,” he reminded the congress.

Rachna Kumari, of International Federation of Anti-leprosy Associations or ILEP, who is based in Munger in Eastern India’s Bihar state, told IPS: “We cannot end stigma just by treating leprosy as a health issue.”

If only health workers are assigned to work on leprosy, they will work on medication. That is not enough to solve the problem we face. So, we need education. Government must include information on leprosy in school books. There must be billboards and large posters which can educate both patients and healthcare workers. Only with such a holistic approach we can win this,” Kumari said.

Earlier, delivering the keynote speech, the Philippine Secretary of Health Francisco Duque asserted that his government remains serious about respecting the rights of leprosy-affected people.

“The vision of our Universal healthcare for the Filipino people is deeply tied to the aspirations of the 2016-2020 global strategy for the leprosy and goal number 3 of the SDGs or the sustainable development goals. We remain committed to these goals and aspirations. We are committed to zero stigma, zero disability, zero transmission and  zero disease,” Duque told the congress.

Duque also stressed the importance of partnerships to achieve the goals yet unmet.

“We are only a  few months away form 2020 and our midterm strategy is only getting underway. We must work together. This year’s conference emphasises the need for partnerships to create a world without leprosy. And our success and your success may define the relations we have made and continue to make.

Acknowledging stigma as a “barrier for early detection and treatment“ of leprosy, Huong Thi Giang Tran, WHO’s Director for Disease Control in the Western Pacific also said that stigma limits the opportunity for life and leads to social and economic exclusion. She called for the addressing of stigma at the policy level.

 

Nothing For Us, Without Us – Hansen’s Disease-Affected Tell International Gathering

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Jennifer Quimno of the Coalition of Leprosy Advocates of the Philippines (CLAP) (centre) is joined by Sri Lanka’s Shagana Thiygalingam (L) and Amarasinghe Manjula (R) after Quimno delivered the recommendations presented by the Global Forum of People’s Organisations on Hansen’s Disease to the International Leprosy Congress in Manila on September 11. Credit: Ben Kritz/IPS

MANILA, Sep 11 2019 (IPS) – Stronger government action to fight stigma and discrimination, more government funding for health and non-health support programmes, and a larger role for people’s organisations in developing policy towards Hansen’s disease treatment and eradication are still needed for eliminating the disease.

This was some of the recommendations made by participants of the first ever Global Forum of People’s Organisations on Hansen’s Disease today, Sept. 11 during a presentation to global academics, scientists, researchers, health staff, partners and those affected by the disease at the 20th International Leprosy Congress (ILC).

Jennifer Quimno, secretary of the Coalition of Leprosy Advocates of the Philippines (CLAP), was chosen by the forum participants to represent the group.

“I really felt I was carrying everyone’s voices with me,” Quimno told IPS.

Ending stigma, improving cooperation

The ILC, which is currently being held in Manila, Philippines, is hosted every three years and was last held in China in 2016.

Prior to the start of the congress, Japan’s Sasakawa Health Foundation (SHF) and The Nippon Foundation (TNF), which support elimination of the disease as well as various organisations of persons affected by the disease, held a global gathering from Sept. 7 to 10. For the first time, organisations of those affected by Hansen’s disease from 23 countries across Africa, Asia, Latin America and the Caribbean met to share their know-how and experiences in eliminating Hansen’s disease.

Along with recommendations for eliminating discriminatory laws and practices, including social, psychological, and economic support in Hansen’s disease management programmes, and giving people affected by the disease a greater voice in policy formulation, the forum debated that a shift in terminology from “leprosy” to “Hansen’s disease” be promoted to help combat the historic stigma associated with the disease. No consensus was reached, however.

The recommendations called for comprehensive action and the involvement of non-health agencies and other stakeholders, because areas such as clean water and sanitation, proper housing, education, and dignified work are all, in the view of people’s organisations, critical to efforts to stamp out the disease.

The forum also called for a much greater role for people’s organisations in sustaining Hansen’s Disease treatment, rehabilitation, and services, and in promoting dignity, equality, and respect for human rights.

“Hansen’s disease is more than a disease caused by a bacterium. Poverty, institutional, social and political neglect, complacency and the structural invisibility of vulnerable populations contribute to the perpetuation of Hansen’s disease,” the final draft of the forum’s recommendations read.

Other key recommendations presented to the ILC by the forum include: More funding for research to fill scientific knowledge gaps that still exist (much remains unclear about the transmission of the disease); greater focus by national programmes on case detection, disability prevention, and rehabilitation during treatment; and more funding for “care after cure” programmes, including psychological, social, and economic rehabilitation.

To combat the stigma associated with the disease, the forum urged the widest possible dissemination and adoption by governments, NGOs, and other stakeholders of United Nations guidelines for the elimination of stigma and discrimination. 

The conclusions also made a firm demand for the elimination of all existing discriminatory laws and practises globally, saying that this would further require “affirmative and reparation policies,” in order to be truly effective in promoting equality.

The people’s organisations also made a call for a greater role in government policy-making toward leprosy. They did not neglect improvements in their own capabilities as well. While calling on governments to develop measurable action plans, the people’s organisations noted they must improve their effectiveness by through strengthening networks, and engaging more productively with governments.

Hope for the future, but a few uncertainties

Participants at the global forum who attended the first day of the ILC expressed hope the recommendations would lead to positive action, but noted uncertainties remain.

“Being able to do this at the ILC is a milestone for us, to have our perspective heard,” Frank Onde, president of CLAP, told IPS. While people affected by Hansen’s disease have regularly participated in the ILC, Onde felt this was the first time recommendations were presented in an organised way.

For Indonesia’s Ermawati, a member of PerMaTa, “Attending this congress is like a dream, to come from my village to be involved in a gathering like this,” she told IPS. “It’s inspiring, and I hope it would inspire others [affected by leprosy] to join us and help others.” 

Ermawati was hopeful the recommendations would lead to greater awareness and reduce stigma, particularly the discrimination against women in her country. “I hope it leads to greater acceptance, particularly of us women. In my country, the stigma is very great.” One problem faced by Indonesian women afflicted with leprosy is that they cannot marry; if laws in an area do not actually prohibit it, the culture in most places encourages men to shun these women.

Shagana Thiyagalingam, who is from Sri Lanka, felt that Quimno’s presentation was inspiring. Quimno spoke of how after both she and her father had contracted the disease, but how she still continued her studies currently works with the government health department. “Her story was so motivational,” Shagana told IPS. “It should encourage other women to come forward and feel less stigma.”

Thiyagalingam’s traveling companion Amarasinghe Manjula was likewise inspired by Quimno’s personal story.

While optimistic about what lies ahead, CLAP’s Onde, and his Indonesian counterpart Paulus Manek, the president of PerMaTa, expressed a few reservations. “The barriers [between people’s organisations and government agencies] really need to be minimised,” Onde said.

Manek saw the size of the ILC gathering itself as a sort of barrier to effective action. “It’s almost too big,” Manek said. “I see people here, they are interested in one or two issues only. Maybe there should be a closer focus on fewer issues at once.”

He also suggested that new guidelines from the United Nations Human Rights Council would be useful.  

“It would help us,” Manek said. “I think the media can also help to spread awareness and stopping discrimination.”

Quimno for her part was hoping to see some concrete actions taken as a result of her presentation on behalf of the global forum. “There are so many gaps to fill, so I would hope these people here would commit to studying and planning actions to take on the things we recommended. That would be progress.”