Calls for Reform, Research and Reorganisation in Leprosy Healthcare

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Human Rights

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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Human Rights

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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Human Rights

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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Human Rights

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.


‘Join Me on this Journey’ to Eliminate Leprosy – WHO Ambassador

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Human Rights

YOHEI SASAKAWA, World Health Organization’s (WHO) Goodwill Ambassador for Leprosy Elimination and chairperson of The Nippon Foundation, speaks to IPS correspondent Stella Paul about his decades long campaign to achieve zero leprosy and eliminate stigmatisation of those affected.

MANILA, Sep 10 2019 (IPS) – Octogenarian Yohei Sasakawa has travelled to more than 90 countries across the globe; from areas of conflict, to the jungles of Brazil, shaking hands, hugging and washing the feet of Hansen’s disease-affected people. His message is simple: Stop stigmatisation and eliminate the disease.

Sasakawa, who has spent more than 40 years working towards elimination of Hansen’s disease, is the World Health Organization’s (WHO) Goodwill Ambassador for Leprosy Elimination and chairperson of The Nippon Foundation (TNF). Since 1975, TNF and its sister organisation, the Sasakawa Health Foundation (SHF), have contributed over USD200 million in financial support for the WHO’s Global Leprosy programme. Both foundations support elimination of the disease globally and provide information and awareness about the disease through the Leprosy Today website.

Sasakawa told IPS in an exclusive interview that he does not believe in sitting in “air-conditioned rooms” looking at data and making decisions about the elimination of the disease. “That will not be helpful to people. You must go to the actual site. That is why I travel across the world — even if it’s scorching deserts or the jungles of Brazil or areas that are difficult to reach or even areas that are dangerous.”

Sasakawa, who says that discrimination and stigmatisation against people affected by Hansen’s disease was the original human rights violation, advocated for this to be included in the United Nations human rights agenda.

Yohei Sasakawa, the World Health Organization’s (WHO) Goodwill Ambassador for Leprosy Elimination and chairperson of The Nippon Foundation, has dedicated more than four decades towards eliminating Hansen’s disease and putting an end to the stigmatisation that people affected by the disease face globally. Courtesy: Sasakawa Health Foundation/The Nippon Foundation

In 2010, his efforts bore fruition when the United Nations General Assembly Resolution on elimination of discrimination against persons affected by leprosy and their family members and accompanying principle and guidelines was passed.

“If you look around us, there are multiple issues in front of us. When it comes to leprosy, people discriminating against people started in the age of the Old Testament. So it goes back a long time in our past history. So I think leprosy is the origin of human rights violation because of the fact that it started such a long time ago,” the recipient of the 2019 Order of the Rising Sun and 2018 Gandhi Peace Prize winner told IPS.

He said that 60 percent of the more than 210,000 new global leprosy cases for 2017 originated in India, adding that India’s Prime Minister Narendra Modi had made a strong commitment to make 2030 the year of zero leprosy in the country.

Sasakawa is currently in Manila, Philippines, to attend the TNF/SHF-sponsored Global Forum of People’s Organisations on Hansen’s Disease, which is being held Sept. 7 to 10. He will also deliver a keynote address at the 20th International Leprosy Congress (ILC), which takes place Sept. 11 to 13.

Through his work Sasakawa has met more than 150 national leaders, including presidents and prime ministers, sharing his message and gaining their support and commitment to eliminate leprosy.

However, he stressed, that his efforts alone would not eliminate the disease and called on the youth to “take action in their own countries” and encouraged them to begin discussions for solutions on social media platforms.

“I would definitely ask young people to join me on this journey.”

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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.’”