Translating Ambition to Action: High Hopes for United Nations Action Week

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Cameron Diver is Deputy Director-General, the Pacific Community (SPC)

New Caledonia, Sep 13 2019 (IPS) – In less than 10 days, countries from around the planet will come together in New York for the United Nations Secretary General’s Climate Action Summit. I look forward to representing the Pacific Community (SPC) at this important event, and throughout “Action Week” during the upcoming UN General Assembly.

Cameron Diver

The interconnections and synergies between major issues of global concern and the key role multilateralism and international cooperation can play in helping tackle these challenges are illustrated by the agenda of the week from 23 to 27 September. Underpinned by the Sustainable Development Goals, each of the high-level summits will focus on commitments to accelerate action across climate change, enhance efforts to secure healthy, peaceful and prosperous lives for all, mobilise sufficient financing to realise the 2030 Agenda and address the specific issues and vulnerabilities of small island developing states.

The week of summits kicks off with a focus on climate action. And this is, in my mind, highly appropriate. The multiplier effect of climate change undermines our efforts to achieve the sustainable development goals, it increases the challenges of biodiversity conservation and sustainable use, it intensifies competition and the potential for conflict around natural resources and it poses the single greatest existential threat to the lives and livelihoods of millions of people around the globe. From where I stand, the science on climate change is clear. To take only these examples, the IPCC Special Reports on the impacts of global warming of 1.5° above pre-industrial levels and climate change, desertification, land degradation, sustainable land management, food security and greenhouse gas fluxes in terrestrial ecosystems provide us with the most robust, high quality evidence base to understand the significant negative impact climate change is already having on our natural environment, on the wellbeing of people, ecosystems, flora and fauna and the massive and potentially irreversible consequences of inaction. As regards our ocean, the upcoming Special Report on the Ocean and Cryosphere in a Changing Climate is likely to confirm what the islands of the Blue Pacific continent, and others whose cultures, traditions and livelihoods are deeply attached to the ocean, have already sensed: the climate crisis is a real and present threat to ocean and coastal ecosystems and the human communities that depend on them.

The stakes are high, but where there is a threat there is also an opportunity. If we act now, there is still have time effectively to tackle the climate crisis! To put it simply: ambition without action is insufficient and simply not an option. SPC is committed to working with our Member States, international and regional partners to translate climate ambition into tangible climate action, for both mitigation and adaptation. The benefits could be huge, with the Global Commission on Adaptation estimating that investing $1.8 trillion in climate adaptation globally in just five areas from 2020 to 2030 could generate $7.1 trillion in total net benefits. We are also convinced that we must collectively harness the synergies between, for example, climate and the ocean, biodiversity, health, security, economic development, food systems, land use, gender and many other development areas to fully exploit the potential of the SDGs and ensure that future pathways to sustainable development are integrated, inclusive, nature-friendly, climate-informed and resilient. SPC is already implementing this approach with its Members and partners. One illustration is our EU funded PROTEGE project, whose intended outcomes include a transition to sustainable integrated agriculture and sound forestry resource management; sustainable fisheries and aquaculture management that is integrated in and adapted to island economies; sustainable integrated water resource management; and invasive alien species control, all against a backdrop of climate-change hazards that require ecosystem and biodiversity protection, resilience and restoration.

As was recently remarked to me at the Green Climate Fund Global Programming Conference in Korea: “we already know what we must do. We need to stop talking and start doing”. It is my sincere hope that “Action Week” in New York will indeed be a turning point for “doing”; a catalyst for firm, measurable commitments to tangible actions that match the level of ambition already expressed to address the climate crisis and the multiple development challenges that remain as we approach the final decade of the 2030 Agenda. If we do not translate ambition into action, we will fail ourselves, we will fail future generations and we will fail our planet. If, however, we take up the challenge and take sustained, coordinated and integrated action, we can win the battle against climate change, create new and innovative opportunities for development, deliver on the promise of the Global Goals and trace a positive pathway to new era of resilient and sustainable development. High hopes indeed…

 

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.

 

Ministers Call for Coalition to scale up land restoration massively worldwide

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Climate Change, Conferences, Environment

NEW DELHI, Sep 11 2019 – 1. On the road to the Climate Action Summit, the Minister of Environment, Forest and Climate Change of India and President of COP14, His Excellency Mr. Prakash Javedkar, and the United Nations Deputy Secretary-General, Her Excellency Ms. Amina J. Mohammed, hosted a high-level luncheon on land and climate on 9 September 2019, on the margins of the UNCCD Fourteenth Session of the Conference of the Parties (COP14). The event was co-facilitated by the United Nations Convention to Combat Desertification (UNCCD) and the United Nations Environment Programme (UNEP).

2. During the meeting, participants underscored that land resources are the basis for human health, livelihoods, food security, and for our economic, cultural and spiritual well-being. Some 25 per cent of the world’s land is degraded (IPCC, 2019), affecting the lives of 3.2 billion people, particularly smallholder farmers, those in rural communities and the world’s poorest populations (IPBES, 2018). Women in particular are on the daily frontline struggle to salvage the large area of agricultural land already affected by land degradation. And the stewardship of indigenous peoples is essential to safeguard the world’s remaining biodiversity. All vulnerable groups who depend on sustainable land management and who can contribute to land restoration need our support.

3. Participants welcomed the IPCC’s special report on Climate Change and Land which constitutes the first comprehensive study of the entire land-climate system. As such, they agreed that it is a fundamental contribution to global negotiations on climate change, biodiversity and sustainable land management, and calls for synergies between the Rio Conventions. The report provides a sound basis for ambitious actions contributing to climate change adaptation and mitigation, biodiversity conservation as well as to combat land degradation and enhance food security.

4. Participants stressed that restoring degraded lands and achieving land degradation neutrality (SDG 15.3) provided an integrated solution to increase ecosystems and populations resilience as well as to enhance the capacity of our land for carbon sequestration. Land use must therefore be an integral part of the climate solution, rather than a cause of GHG emissions. This will strengthen biodiversity conservation, increase livelihoods and human security. It will also curb emissions from degrading lands and help close the projected emissions gap between Nationally Determined Contributions (NDCs) and the Paris Agreement objectives. Most importantly, land degradation neutrality will improve the living conditions of affected populations and the health and productivity of their ecosystems.

5. Participants agreed that land restoration will deliver co-benefits to many Sustainable Development Goals and that the three Rio Conventions can actively work together to support restoration activities as an important contribution to the 2030 Agenda for Sustainable Development.

6. Participants agreed that the critical role of land restoration for climate mitigation and adaptation must be visible. The Climate Action Summit will send a strong political signal for more public funding and private investments to enable land restoration for impact at the scale needed, through gender-responsive, transformative projects and programmes that seek to generate and sustain fundamental and sustainable positive change. Every 1 USD invested in land restoration is expected to generate up to 10 USD in returns for society through more efficient agricultural practices, integrated water management, and vital ecosystem functions (GPFLR, 2018).

7. Participants indicated that time had come to turn the vicious circle between land and climate into a virtuous one by reinforcing the positive elements of the relationship, helping to manage emissions on the one hand and adapting to climate impacts on the other. Participants therefore called for more concerted policy action, more investments, and more capacity to scale up land restoration to achieve land degradation neutrality. They expect the Nature-Based Solutions Coalition to propose concrete and ambitious actions at the Summit.

8. Participants supported the global effort to achieve land degradation neutrality through ambitious initiatives such as the Bonn Challenge target of having at least 350 million hectares of degraded land under active restoration by 2030 and the Great Green Wall for the Sahara and Sahel Initiative. Participants also welcomed the UN Decade on Ecosystem Restoration 2021-2030 (UN General Assembly resolution 73/284) as a unique opportunity to galvanize political will, increased investments, and action on the ground for land restoration at massive scale across the world.

9. Participants called for the UN Climate Action Summit to be the starting point for the establishment of a coalition of countries, to accelerate massive scaling up of land restoration activities worldwide, and to act as the building block of the UN Decade of Ecosystem Restoration (2021–2030). A coalition of active countries could federate and accelerate the achievement of existing ecosystem restoration goals of all into the UN Decade – a decade of action and impact on the ground for the planet, for the people and for prosperity.

10. Participants included Armenia, Austria, Bolivia, Brazil, Burkina Faso, Chile, China, Colombia, Costa Rica, Fiji, Finland, France, Gambia, Germany, Haiti, Iceland, Italy, Japan, Morocco, Nicaragua, Niger, Nigeria, Norway, Peru, Republic of Korea, Saint Lucia, Saint Vincent and the Grenadines, Samoa, South Africa, Tajikistan, The United Kingdom, the European Union as well as CBD, GCF, GEF, FAO, IPBES, IPCC, UNCCD, UNDP, UNEP, UNFCCC, UNRC India and the World Bank.

For further information, please contact:

    • Ms. Wagaki Wischnewski, wwischnewski@unccd.int, Cell: +91 74284 94332/+49-173-268-7593
    • Mr. Tim Christophersen, tim.christophersen@un.org, Cell : +254706044045

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‘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.”

 

The Emergence of a Global Voice for Hansen’s Disease Affected Persons

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Her experience and the chance “to help strengthen Colombia, the world, and my family” through participating in the Global Forum of People’s Organisations on Hansen’s Disease, sponsored by the Nippon Foundation and the Sasakawa Health Foundation, was like “rising from the ashes” for Lucrecia Vazques from Felehansen Colombia. Vazques’ family was hit hard by leprosy, with not only herself, but her son and one-month-old granddaughter being afflicted. Credit: Ben Kritz/IPS

MANILA, Sep 10 2019 (IPS) – The Global Forum of People’s Organisations on Hansen’s Disease, which was attended by members of people’s organisations from 23 different countries, wrapped up in Manila, Philippines, today Sept. 10 after four days of discussion and deliberation.

The main outcome was a set of recommendations, which included participants stating that those affected by the disease should have more inclusive roles in the global campaign against leprosy.

Asked to share his impressions of the forum with his fellow participants, Joshua Oraga, who is a member of ALM Kenya, a local Hansen’s disease non-profit, told the audience, “We should all familiarise ourselves with the WHO [World Health Organisation] guidelines on strengthening the participation of persons affected by leprosy in leprosy services. That should be our creed, because if you look at that document, you will see that we are the only stakeholders who have an end-to-end role.”

He said that those affected by leprosy or Hansen’s disease had a role in overcoming stigma and discrimination.

“We have a role in the promotion of equity, social justice, and human rights, we have a role in addressing gender issues, we have a role in the dissemination of information, education, communication…. We have a role in advocacy, we have a role in counselling and psychological support, we have a role in training and capacity-building, we have a role in referral services, we have a role in resource mobilisation…. So, we are everywhere!”

Oraga’s enthusiastic impressions in a way defined the outcome of the forum organised by Japan’s Sasakawa Health Foundation (SHF) and The Nippon Foundation (TNF), which support elimination of the disease globally and provide information and awareness about the disease through their dedicated website titled Leprosy Today.

The recommendations will be presented on the first day of the International Leprosy Congress (ILC), which is also being held in Manila from Sept. 11 to 13. The recommendations addressed increasing awareness of Hansen’s Disease among the public and governments, calling for greater government support for people’s organisations’ advocacies, taking a larger role in helping to form anti-leprosy policy, and working to build sustainability and more effective networks among organisations spread around the world.

A true people’s forum

To Dr. Takahiro Nanri, Executive Director of SHF, the real value of the recommendations lies not in their details, but in the manner in which they developed.

Nanri noted that the forum’s carefully-planned agenda was quickly thrown off-schedule by the spirited discussions among the participants. “The people really led the forum, and did the work they wanted to do, and I am very happy about that.”

“The recommendations were good ones, but what I think is really important is the process we saw,” he added.

Oraga was likewise pleased and motivated by his experience. Oraga, who had leprosy as a youth, said, “This is the first time I have had the opportunity to take part in a meeting at this level, so imagine my excitement and happiness to be able to come here.”

Oraga also expressed his gratitude for the work that Yohei Sasakawa, World Health Organization’s (WHO) Goodwill Ambassador for Leprosy Elimination and chairperson of TNF, has done over the last four decades. Sasakawa’s foundations have contributed over USD200 million in financial support for the WHO’s Global Leprosy programme. He also advocated for discrimination and stigmatisation against people affected by Hansen’s disease to be included in the United Nations human rights agenda. The resolution was passed in 2010.

“He has done so much for leprosy around the world, and personally I am grateful. Just think of it, because of Mr. Sasakawa, in three years, maybe leprosy will just be like any ordinary sickness,” Oraga said.

Lucrecia Vazques of Felehansen, Colombia also felt the forum was an extraordinary experience. “It’s been wonderful,” she told IPS through a Spanish translator. “It is like resuscitating after a hard moment.”

Vazques’s bubbly personality belies her own difficult experience with Hansen’s disease, which not only afflicted her, but her one-month-old granddaughter and her son, who was diagnosed first.

“It was hard,” Lucrecia said. “I had no knowledge whatsoever.We thought we would die.”

“But there was something to fight for, and to live for, and here I am. This forum means rising from the ashes. And if I had the choice, I would rise from the ashes again, and I would be right here, to help strengthen Colombia, and the world, and my family,” she said.

Looking ahead

But there is much work to still do.

“Because this was a people-led forum, it gives us direction. As you know, our resources are not limitless. We have an obligation, but it is of course better if we can maximise our efforts, and the recommendations help,” Nanri said.

Nanri reiterated the value of the “process” that he saw evolve during the forum, particularly in the context of the Joint Campaign on World Leprosy Day 2020, which will be observed on Jan. 26 next year.

“This was a step. You don’t go from the ground to the 10th floor in one jump. So now the first step has been taken. The next step is to get the groups around the world to do the activities at the same time,” which is the goal of the joint campaign. “When these recommendations are presented at the ILC, the next step can begin,” he said.