‘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.

 

India Promotes South-South Cooperation, but Key Questions Unaddressed

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Joydeep Gupta is the South Asia Director for the Third Pole.

Indian Prime Minister Narendra Modi advocated, “greater South-South cooperation in addressing climate change, biodiversity and land degradation.” Courtesy: GCIS

At his speech at the United Nations Convention to Combat Desertification (UNCCD) summit in Delhi, Prime Minister Narendra Modi emphasised South-South cooperation and technology solutions, but issues of land ownership dog the ongoing negotiations.

As the second week of the UNCCD Conference of Parties (COP) kicked off in Delhi, Indian Prime Minister Narendra Modi highlighted South-South cooperation and issues of land degradation.

Speaking at the opening ceremony of the high level segment, he said that it was increasingly accepted that climate change impacts were leading to a loss of land, plants and animal species, and that it was causing, “land degradation of various kinds (including) rise of sea levels, wave action, and erratic rainfall and storms”.

All of these issues have a significant impact on India, and other developing countries, and as such, the Prime Minister advocated, “greater South-South cooperation in addressing climate change, biodiversity and land degradation.”

He said India would act both internally and externally on this. Domestically, he said that India was increasing its commitment to restore 21 million hectares of land by 2030 to 26 million hectares, an increase of 5 million hectares. The co-benefit of this would be that it would help create a carbon sink for 2.5-3 billion tonnes of carbon through increased tree cover.

On external action, he said that India was, “happy to help other friendly countries cost-effective satellite and space technologies,” and that it would be creating a Centre for Excellence at the Indian Council for Forestry Research and Education in Dehradun to promote South-South cooperation, where other countries could access technology and training.

Hard questions

Nevertheless, this avoids some of the hard questions that have been dogging the UNCCD COP. Who owns the land? Who is responsible when the land is no longer able to support a livelihood, and a farmer is forced to migrate?

These are not questions anyone thought about when they launched the UNCCD 25 years ago. But since degradation of land due to a variety of reasons precedes desertification, these questions are increasingly worrying policymakers, especially from developing countries. At the ongoing New Delhi summit, the issues have come to the fore, and have divided governments along the lines of developed and developing nations, a process familiar to observers of UN climate negotiations.

Despite Narendra Modi’s speech at the high level segment, these issues remained unresolved, with bureaucrats awaiting instructions from the 100-odd ministers gathered at the Indian capital.

The NGOs who work on farming issues are clear that land degradation cannot be halted unless farmers around the world have guaranteed rights over the land on which they grow food for everyone. This may sound like a no-brainer, but estimates show that globally only around 12% of all farmers can claim legal rights over the land they till. To this, experts would like to add the land held in various forms of community ownership, sometimes by indigenous communities. But few countries have strong laws to protect such ownership.

In the first week of the New Delhi summit, developing country governments have wanted this issue of land tenure being discussed at the UNCCD forum, and developed countries – led by the US delegation – have opposed the inclusion. The industrialised countries say it is an issue of different laws in different countries, and discussing it in the UN is not going to help.

Land tenure

But, with land degradation being inextricably tied up with climate change and biodiversity, the urgency of the situation may force UNCCD to discuss land tenure in this and future meetings, and to come up with possible solutions.

The solutions are not always as straightforward as they may seem, warned UNCCD chief scientist Baron Orr in a conversation with thethirdpole.net. Think of what a farmer – especially a smallholder farmer – is likely to do if offered a high price for land. Most of them are likely to sell, as evidenced by the mushrooming malls, offices and homes all around the current summit venue, which was all farmland just about a decade ago. And what happens to our food supply if this replicated globally?

Land tenure is important to halt degradation because people naturally provide better protection to land they own. But it is not enough. A farmer faced with competitors using chemical fertilisers and pesticides is not going to move to organic farming just because that is better for the soil.

Most farmers cannot afford to do that. They need help, as was seen in India when the state of Sikkim pledged to do only organic farming. Sikkim is a relatively small state – replicating that kind of help on a global or even national scale may need far more money than is available for the purpose, as Orr pointed out.

Land tenure is also an area where women face discrimination in a big way. Data journalism site IndiaSpend reported that 73.2% of the country’s rural women workers are farmers, but have only 12.8% of India’s land holdings.

Migration: the hot potato

Farmers being forced to migrate because their farms can no longer support them due to land degradation and climate change is the hottest potato of them all. Developed countries are united in opposing this major “push” factor in migration, insisting that people migrate only due to “pull” factors such as better economic opportunities. Developing countries, especially those from the Sahel belt stretching from the western to the eastern coast of Africa, point to numerous instances where farmers are forced off land gone barren, and insist on this issue being discussed by UNCCD.

Former UNCCD chief Monique Barbut has said almost all Africans trying to move to Europe are doing so due to land degradation and drought. Without putting it in words that strong, current UNCCD chief Ibrahim Thiaw has backed the inclusion of migration in the conference agenda.

As host government and conference president, India may have to use all its diplomatic skills if this knot is to be untied during this summit – an especially tricky manoeuvre because India has consistently refused to accept that immigrants from Bangladesh are entering this country because their farms can no longer support them.

And it is not just migration across countries. At a meeting organised on the sidelines of the summit by local government organisation ICLEI, mayor after mayor got up to say farmers are coming into their cities in increasing numbers due to land degradation and climate change, but they have no budget to provide any housing, water, electricity, roads or any form of livelihood to these millions of immigrants.

Still, developed country delegations insist UNCCD is not the right forum to discuss migration. What all 196 governments and the European Union agree upon in the next day or two remains to be seen.

Human efforts

Prakash Javadekar, India’s Minister of Environment, Forests and Climate Change and the conference president, had said at the opening, “If human actions have created the problems of climate change, land degradation and biodiversity loss, it is the strong intent, technology and intellect that will make (the) difference. It is human efforts that will undo the damage and improve the habitats. We meet here now to ensure that this happens.” This foreshadowed what the Prime Minister said today.

He pointed out that 122 countries, among them Brazil, China, India, Nigeria, Russia and South Africa, which are among the largest and most populous nations on earth, “have agreed to make the Sustainable Development Goal of achieving land degradation neutrality a national target.”

Thiaw drew attention to the warnings sounded by recent scientific assessments and the growing public alarm at the frequency of weather-related disasters such as drought, forest fires, flash floods and soil loss. He urged delegates to be mindful of the opportunities for change that are opening up, and take action. The response of governments from developed countries will decide how useful the current summit will be.

The world is in trouble otherwise. The current pace of land transformation is putting a million species at risk of extinction. One in four hectares of this converted land is no longer usable due to unsustainable land management practices. These trends have put the well-being of 3.2 billion people around the world at risk. In tandem with climate change, this may force up to 700 million people to migrate by 2050.

This story was first published on thethirdpole.net and can be found here.

 

Awareness Should be the Priority in Public Health Efforts against Leprosy

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Dexter, a 25-year-old fisherman from Pohnpei in the Federated States of Micronesia, received treatment for Hansen’s disease, also known as leprosy, for over a year. He has been cured of the disease. Credit: Stella Paul/IPS

MANILA, Sep 9 2019 (IPS) – Increasing awareness of the continuing existence of Hansen’s Disease (leprosy) is critical to sustaining effective public health efforts against the disease, eliminating the social stigma associated with it, and halting its transmission.

That was the consensus reached by participants at the Global Forum of People’s Organisations on Hansen’s Disease in Manila on Sept. 9, following a lecture by Dr. Arturo Cunanan, the Chief Medical Officer of the Culion Sanitarium and General Hospital in the Philippines.The forum was organised by Japan’s Sasakawa Health Foundation (SHF) and The Nippon Foundation. 

Cunanan noted that for several years, the number of new cases has plateaued at about 200,000 per year, a troubling statistic that he attributed in part to a lack of awareness among public health bodies as well as people affected by the disease.

The social stigma attached to leprosy is a barrier to early detection of the disease, which is the key to slowing its rate of transmission. Cunanan said that the average length of time between the onset of the disease and the beginning of treatment is about two years.

This happens because on the one hand, patients are unaware of medical help available to them, unwilling, or otherwise unable to seek treatment due to stigma; and on the other, a lack of expertise and resources on the part of public health departments due to a misunderstanding of the persistence of the disease.

Not a priority

“Many public health and government officials confuse elimination and eradication,” Cunanan told the forum participants. “They think that leprosy being eliminated as a public health problem means it has been eradicated, so they are surprised when they learn it still exists.”

What this has resulted in is a decline in the material and human resources available for combatting leprosy. “Leprosy will never be a priority” for government health programmes, Cunanan said. “There are more pressing problems, bigger emergencies.”

The Philippines is a good example. The disease is considered a minor problem, and the number of new cases each year is relatively low – there were 2,108 new cases in 2017, out of a national population of about 107 million – but has been relatively consistent year after year, “between 2,000 and about 3,000”.

Because of the mistaken belief that leprosy has either disappeared entirely or has become rare, medical expertise and programmes have disappeared from public health institutions. That in turn has degraded the supervision and monitoring needed to identify new cases and prevent the transmission of the disease, Cunanan explained.

Lucy Massao, a member of the Tanzania Leprosy Association (TLA), noted that the stigma and lack of understanding of leprosy among the public in her country was also reflected in the shortcomings of the public health framework.

“We at TLA really spend a lot of time trying to educate people, including the officials,” she said. “Many patients, the health officials refer to us, because they cannot offer much support except for the medications. But they are improving, through working with us.”

Role of people’s organisations

Public health authorities elsewhere are also gradually recognising the value of the organisations of people who have been affected by leprosy. “You are the best experts,” Cunanan told the forum participants, “Because you have first-hand experience.”

Organisation members can assist in early detection and outreach, Cunanan explained, and help public health authorities improve their services to leprosy patients.

In the Philippines, collaboration with people’s organisations such as Coalition of Leprosy Advocates of the Philippines has actually been included in official policy. Philippine Assistant Secretary of Health Dr. Maria Laxamana, who delivered the keynote address on the forum’s first day, noted that “intensified collaborative efforts among [government] agencies and with private partners” is a key objective of the government’s National Leprosy Control Programme.

Dr. V.R. Pemmaraju of the World Health Organisation’s (WHO) Global Leprosy Programme said that there has been a marked growth in talent and inclusiveness among people’s organisations, which is increasing their effectiveness in supporting and extending public health efforts towards leprosy.

“What we’re seeing, and you can see it at this forum, is that the groups are more global, include more women, and are more educated about the disease and the support needed,” Pemmaraju told IPS.

“This has been very good from the point of view of the WHO, because of the added social aspect of the Global Leprosy Partnership,” he explained. Where people’s organisations still need to develop is in working effectively with governments.

“They [the organisations] have the experience and knowledge about leprosy, but what I’ve seen is that most need more skills in negotiating and engaging with government officials,” Pemmaraju said. “There is still some gap in inclusion of people’s organisations in forming public health policy [related to leprosy], and developing those skills would help to reduce that.”

Pemmaraju is upbeat about the prospects of people’s organisations gaining a bigger voice in public health policy towards leprosy.

“In each of these meetings, I see the groups growing globally and gaining more influence,” Pemmaraju said. “With the engagement of the people’s organisations, we [the WHO] are optimistic that we can achieve our goal of ‘zero leprosy.’”

 

The Business of Social Enterprise

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Human Rights

Ariel Lazarte of the Coalition of Leprosy Advocates of the Philippines (CLAP) shows off the dried fish production run by patients of a transient house operated by HD (Hope & Dignity) Philippines. Courtesy: Ariel Lazarte

MANILA, Sep 8 2019 (IPS) – Organisations supporting people affected by Hansen’s disease (leprosy) have social rather than capitalist aims, but they need to take a business-minded approach to their work if they wish to be sustainable, experts at a global conference in Manila, Philippines said.


In workshops conducted at the Global Forum of People’s Organisations on Hansen’s Disease in Manila on Saturday and Sunday, Sept. 7 and 8, representatives of organisations from Asia, Africa, and Latin America agreed that sustainability is the biggest challenge they face.

Every organisation faces some uncertainty over the continuity of donor or government financial support, so reducing or eliminating reliance on external funding is considered a critical priority.

Japan’s The Nippon Foundation (TNF) and Sasakawa Health Foundation (SHF), which sponsored the global forum and provided capacity support to the participating organisations, have long taken the view that sustainability should be the ultimate goal.

At a regional conference of people’s organisations held here in March, SHF Executive Director Dr. Takahiro Nanri stressed that his foundation’s goal was to see its beneficiaries become self-supporting. “In order to be truly sustainable, the organisation needs to develop an income-generating programme,” Nanri said at the time.

Dr. Marie Lisa Dacanay president of the Institute for Social Entrepreneurship in Asia (ISEA) outlined the fundamentals of effective social enterprises, which were derived from research conducted by ISEA in India, Indonesia, Bangladesh and the Philippines. Credit: Ben Kritz/IPS

Fundamentals of social enterprises

On Sunday Sept. 8, Dr. Marie Lisa Dacanay president of the Institute for Social Entrepreneurship in Asia (ISEA) outlined the fundamentals of effective social enterprises, which were derived from research conducted by the institute in India, Indonesia, Bangladesh and the Philippines.

Social enterprises have three common traits, Dacanay explained:

  • They are driven by a social mission instead of an enterprise mission;
  • Successful social enterprises are wealth-creating organisations that provide some form of marketable products or services; and
  • They follow a distributive enterprise philosophy in that profits are directed towards the social mission rather than being collected as return on investment.

In carrying out its mission, a social enterprise faces a number of external and internal challenges, Dacanay said.

External pressures come in the form of climate or environmental factors – a significant concern of agriculture-based enterprises; unfavourable government policies; harmful industry or market practises; inadequate government support for social programs; and institutional corruption.

Internal challenges include difficulty in accessing needed technology; securing initial financing; organisational and management capacity; production efficiency; and developing practical measures of the enterprise’s social impact.

Based on ISEA’s research, successful social enterprises can be organised following an entrepreneur non-profit model, a social cooperative model, a social business model, or what she described as “social entrepreneurship intervention,” which is a hybrid combining characteristics of all three models.
In determining which form of organisation is most suitable to the social mission, Dacanay told IPS, “I think everything starts with the reality. Every social entrepreneur starts with, ‘what are the needs, and the problem?’”

“The first step is really understanding the stakeholders you want to help,” Dacanay continued, “find out what they are doing already, and look at what gaps there are. That, along with the resources and capabilities available, define a way of moving forward, and then the organisational form will follow.”

Social business is still business

In the Saturday workshop, Earl Parreno, the chairman of the Philippines’ Altertrade Foundation, Inc. (ATFI) conducted a training in business planning basics for the assembled people’s organisations.

Defining a social enterprise as one that pursues a triple bottom line philosophy (financial, social, and environmental results), Parreno explained that the fundamentals of business planning must still be applied, but that organisations that are made up of people who are both the providers and beneficiaries of a social mission are often handicapped by a complete lack of capacity.

“Poverty is not just lack of financial resources,” Parreno told the workshop participants in his presentation, “It’s really incapability, a lack of knowledge.”

Developing the capabilities can be an arduous process, but is achievable. One of ATFI’s areas of focus in the Philippines is among poor farmworkers in Negros Province, a centre for sugar production. Parreno described the success of the social enterprise supported by ATFI in marketing Muscovado sugar – semi-raw sugar that was at one time considered “poor man’s sugar,” but is now a premium-priced staple in organic food stores.

“The business ideation is really critical,” Parreno explained to IPS. “We have a saying here in the Philippines: gaya-gaya puta maya, which means something like ‘copycat.’” A common problem among new social enterprises, Parreno said, is a lack of originality in the revenue-generating product or service they wish to pursue.

“What we stress to our social enterprise partners is that they should not conceive a product or service that’s just better, but one that is truly different and has a ‘solidarity market,’” Parreno said, such as the market of “mindful consumers” for organic Muscovado sugar discovered by the Negros sugar farmers. “That solidarity market is so important. It really gives the people’s organisation a fighting chance.”

According to Parreno, developing a sound business plan, from business ideation through resource mapping, feasibility study, and market analysis answers one of the key concerns expressed by many of the forum participants in the post-workshop discussion: The difficulty in securing initial funding to launch a social enterprise.

“The only difference between this kind of (social) business and a conventional business is where the profits go,” Parreno explained. “The discipline and the steps that need to be taken to develop it are very much the same, and if the result is a good business plan, the investors to get it off the ground will follow.”

A poultry and dried fish production project located in Baras, Rizal Province, east of the Philippine capital, employs about 10 people, all residents of a transient house for leprosy patients. It is a good example of a social enterprise that has proved successful.

Ariel Lazarte, a member of Coalition of Leprosy Advocates of the Philippines (CLAP) who runs the social enterprise, told IPS that sales have been good enough that his out-of-pocket expenses have been fully covered by the revenue, as well as providing much-needed funding for the transient house residents.
The social enterprise, part of HD (Hope and Dignity) Philippines, a non-profit managed by Lazarte, makes about 560 dollars a month.

Half of this is ploughed back into the social enterprise and the remainder is used to pay for the living expenses of the patients, including paying for medicines, transport, food, water, and vitamins.
“The only outside funding we had was for [the pen for the chickens],” Lazarte told IPS, noting that the Tikkun Olam Foundation, which supports Hansen’s disease in the country, provided the funding for this.

“The residents of the house who are capable help to tend the chickens, which are layers, and produce the dried fish. We then sell the eggs and fish in the local market.”

Part of the marketing advantage the poultry project has is that the eggs are organic. “We use organic feed for the chickens,” Lazarte said. “No synthetic feed.”