Q&A: Important to Treat Anyone Suffering from Leprosy as an Equal Individual

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Alice Cruz is the United Nations Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, says divorce on the grounds of leprosy, allowed by laws or not, is a prevailing reality. Credit: U.N. Photo / Jean-Marc Ferré

MANILA, Mar 5 2019 (IPS) – Discrimination against women who are affected by leprosy or Hansen’s Disease is a harsh reality, says Alice Cruz is the United Nations Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members.

“Divorce on the grounds of leprosy, allowed by laws or not, is a prevailing reality. In settings where women are not economically independent, it can lead to the feminisation of poverty, throwing too many women affected by leprosy into begging or even prostituting,” says Cruz, who was speaking via audio link at Regional Assembly of Organisations of People Affected by Leprosy in Asia that was held in Manila, Philippines. The Sasakawa Memorial  Health Foundation/the Nippon Foundation (TNF) which supports leprosy projects across the world sponsored the meeting.

A professor at the Law School of University Andina Simon Boliver in Ecuador, Cruz has extensive knowledge of the social stigma and discrimination faced by the people who are affected by leprosy which also amount to the violation of their human rights.

In an interview to IPS, Cruz speaks of the layers and levels of stigma that men, women and children of leprosy-affected people face and how the U.N. has been trying to end it. Finally, she lists the simple ways that every ordinary person can contribute to end the stigma that people living with leprosy face and how to help them become integral to society. Excerpts of the interview follow:

Inter Press Service (IPS): What is the link between human rights violation and the leprosy-affected people? 

Alice Cruz (AC): Throughout history leprosy has become much more than a disease: it became a label, mainly used to exclude. Leprosy came to embody what was socially prescribed as shameful and disrupting. It became a symbol, a powerful metaphor, for everything that should be kept apart, whether it was attributed to punishment for sinful conduct, unregulated behaviour, past offences and socially constructed ideas of racial inferiority, among others harmful myths and stereotypes, which led to massive human rights violations of persons affected by leprosy, but also their family members.

IPS: Can you describe some of the ways the rights of leprosy affected people are violated?

AC: Women, men and children affected by leprosy were, and continue to be in many contexts, denied not only their dignity, but also an acknowledgement of their humanity. It is not a coincidence that it is commonly said that persons affected by leprosy experience a civil death.

They have been consistently subjected to: stigmatising language; segregation; separation from their families and within the household; separation from their children; denial of care; denial of the means of subsistence; denial of a place to live; denial of education; denial of the right to own property; impediments to marry; impediments to have children; restrictions on their freedom of movement; denial of their right to participate in community, public and political life; physical and psychological abuse and violence; compulsory internment; forced sterilisation; institutionalised silencing and invisibility.
There are still more than 50 countries in the world with discriminatory laws against persons affected by leprosy in force.

IPS: What is the UN doing to prevent and end these violations?

AC: In 2010, the General Assembly, in a landmark move, adopted resolution 65/215 and took note of the principles and guidelines on the elimination of discrimination against persons affected by leprosy and their family members. In so doing, it established leprosy as a human rights issue and stressed that persons affected by leprosy and their family members should be treated as individuals with dignity and entitled to all human rights and fundamental freedoms under customary international law, the relevant conventions and national constitutions and laws. In June 2017, the Council adopted resolution 35/9, establishing the mandate of the Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members. It called on States and all relevant stakeholders to cooperate with the Special Rapporteur in the discharge of the mandate. I assumed this role on Nov. 1, 2017.

IPS: How far have we come in achieving the 2020 target leprosy eradication?

AC: I am afraid we are very far from such a scenario. By the one hand, eradication of leprosy is not on the horizon given the lack of a vaccine. By the other hand, official reports of around 150 countries to the [World Health Organisation] WHO in 2016 registered more than new 210 000 cases of leprosy, with high incidence among children, which means ongoing transmission.

IPS: How can every ordinary person contribute to eradication of leprosy and ending stigma towards leprosy affected people? 

AC: Acknowledging that persons affected by leprosy are the same as everyone else and fighting harmful stereotypes in daily life. Remembering that anyone, including you and me, can come to suffer from any disease or disability and that diversity and dignity in diversity is what makes us humans.


New Regional Secretariat to Advance Leprosy Advocacy in Asia

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Culion Sanitarium and General Hospital Medical Director Dr. Arturo Cunanan urged delegates to the Regional Assembly of Organisations of People Affected by Leprosy in Asia to “put our partnership beyond these walls” and act on the strategies discussed at the three-day conference. Credit: Ben Kritz/IPS

MANILA, Mar 5 2019 (IPS) – Organisations of people affected by leprosy in Asia have agreed to form a regional-level secretariat to support national advocacies and represent their collective agenda at a world conference to be held later this year.

This was the most significant development to emerge from the Regional Assembly of Organisations of People Affected by Leprosy in Asia held in Manila from Mar. 3 to 5. The Coalition of Leprosy Advocates of the Philippines (CLAP) was selected by the delegates to serve as the first regional secretariat.

Sasakawa Memorial Health Foundation (SMHF) Executive Director Dr. Takahiro Nanri requested that the first major initiative of the secretariat be the formulation by June of a “road map” encompassing the Assembly’s consensus agenda, which would then be used by the SMHF and it’s parent body the Nippon Foundation (TNF) to help develop the programme for the world leprosy conference to be held in September.

SMHF and TNF convened the regional assembly in partnership with CLAP and the Culion Sanitarium and General Hospital (CSGH).

From theory to practise

CSGH chief Dr. Arturo C. Cunanan told the delegates assembled for the final day of the conference that, “putting our partnerships beyond these walls, putting it into action, is the big challenge” faced by the national organisations, who represented the Philippines, Indonesia, Nepal, China, and Kiribati.

Cunanan, who is considered the Philippines’ foremost leprosy expert, was particularly upbeat about the conference’s focus on improving communications to stakeholders.

“One of the most valuable things to come out of this conference is the learning about social marketing, and what interventions we can use,” Cunanan stressed to the attendees.

Another key takeaway from the conference, Cunanan said, was the recognition of economic opportunity as a vital component of social inclusion strategies for people affected by leprosy.

“I think an important thing that has emerged here is the idea that poverty is really the root of stigmatisation and prejudice,” Cunanan told IPS. “When people have financial resources, the discrimination goes away. Obviously, providing economic opportunity should be a priority for the various national organisations.”

Cunanan pointed out that priority complemented the focus on organisational sustainability, which was an emergent theme at the conference. “It is very similar to the same thinking that organisations need to find income-generating programmes to be sustainable,” Cunanan said. Reiterating the point he made to the assembly, he added that the goal for the organisations should be to put “theory into practise” and develop practical actions from what they learned.

Representatives of participating organisations discussed various national and regional objectives for leprosy advocacy in Asia. A significant outcome of the conference was the formation of a regional secretariat to coordinate and represent the Asian agenda at an upcoming world leprosy congress. Credit: Ben Kritz/IPS

Clear consensus

Starting with an overall theme of “improving social inclusion,” the Regional Assembly of Organisations of People Affected by Leprosy in Asia at the outset identified four areas for discussion: Preserving the history of leprosy and its treatment; defending human rights and eliminating the stigma associated with leprosy; improving the delivery of public health services; and sustainability of the organisations.

The consensus among the participating organisations was that sustainability was indeed a critical priority, and perhaps the most significant challenge faced by leprosy advocacies at the national level.

Another key national-level agenda item agreed by the conference attendees was the need to improve networking with their respective governments, as well as other key organisations. In line with this, developing strategies to improve organisations’ public image, branding, and their marketing efforts was also acknowledged as an important objective for national organisations. During the conference, the importance of understanding and developing effective social marketing was stressed, both through the use of social media and more conventional practises.

The development of a regional secretariat was considered the most important objective at a collective level. The conference participants echoed the sentiments of CSGH’s Cunanan that the shared ideas developed over the three days of talks should not be allowed to “dissolve” when the organisations return to their home countries.

Conference attendees also agreed that creating a “sustainable development strategy” on a regional basis should be prioritised going forward, taking into account the need to strengthen national organisations as well as the regional group. Just what that strategy would entail, however, is still subject to discussion among the various groups. 

Capacity building, improving the organisational and managerial capabilities of national organisations, also emerged as a regional agenda. During the conference, capacity building was expressed as a significant concern for many organisations, since many of their members lack relevant work experience or education. A regional strategy could help pool talent resources among the Asian organisations, at least until some of their own people could gain more experience.

The development of a regional framework and individual national agendas made the first Regional Assembly of Organisations of People Affected by Leprosy in Asia a success, conference facilitator Joseph “Boyet” Ongkiko told IPS.

“What excites me is to see the coming together of different groups, and their coming away with unity of heart and purpose,” Ongkiko said. “With leprosy, there is a commonality in the stories, but what we saw and heard are people moving from victims to victors.”

Nanri told IPS that much still needs to be done.

“There’s a big difference between elimination and eradication. As of today, most countries have eliminated leprosy, but it has not been eradicated yet as new cases continue to appear. To eradicate, what we need is one last big push – or re-activate public attention to leprosy,” he said, adding that until now the information around leprosy has not been well presented.

“If we can better package it, forge better partnership with media and if we can get greater political commitment, we can make that reactivation of people’s attention can happen.”

*Additional reporting by Stella Paul in Manila 


Q&A: Leprosy-affected People Live Not at the Bottom, but Outside the Social Pyramid

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Takahiro Nanri (left – black jacket), Executive Director of Sasakawa Memorial Health Foundation, joins hands with a leprosy survivor (right). Credit: Stella Paul/IPS

MANILA, Mar 5 2019 (IPS) – Takahiro Nanri is the Executive Director of Sasakawa Memorial Health Foundation which has been supporting the global fight against leprosy for almost five decades. Since 2014, Nanri has been leading the foundation’s leprosy projects across the world and has deep insights into the challenges faced by the people affected by leprosy as well as the organisations that work with them.

He also shares the dream of Yohei Sasakawa – the chairman of Nippon Foundation – to see a leprosy-free world and believes that despite several challenges and roadblocks, this dream is indeed possible to realise.

In an exclusive interview with IPS, Nanri talks about the idea behind the regional assembly of leprosy-affected people in Asia that was held in Manila.

He also tells how people who are affected by leprosy  are treated as social outcasts and why they must be integrated with the rest of the society. Finally, Nanri shares his views on how and why leprosy-affected people’s organisations should become sustainable.  Excerpts of the interview follow:

Takahiro Nanri is the Executive Director of the Sasakawa Memorial Health Foundation which has been supporting the global fight against leprosy for five decades. Credit: Stella Paul/IPS

Inter Press Service (IPS): Is there a reason behind Mr Sasakawa’s personal interest in leprosy? Why has the foundation continued even when it is not a big global threat anymore?

Takahiro Nanri (TN): As far as I know it was in the 1960s [when the Sasakawa family] visited leprosariums in some countries like Korea, South Korea, Nepal and at that time there was no Multidrug Therapy ( MDT) and the situation in the sanatoriums was very severe. So they had decided to fight against leprosy and launched the leprosy elimination programme and even established the Sasakawa Memorial Health Foundation.

I am very proud of the fact that this foundation has continued to work on the same issue for 50 years because, although compared to other diseases, this may have decreased, but there is still no end to leprosy.

IPS: How long have you been working on leprosy and what has been your biggest observation?

TN: I have been working on leprosy since 2014. But I have been working on poverty issues for the past 25 years. People affected by leprosy are really poor. So, working for leprosy is in a way working on poverty too.
Several years ago, there was the concept of the bottom of the pyramid; and we talked of the people living at the bottom of the pyramid and how to uplift them. We talked of using microfinance, social business approach etc. But I have realised that the people living with leprosy are actually living outside of the pyramid. That is why I feel integration is very, very important.

IPS: How did you come up with the idea of the Regional Assembly of Organisations of Leprosy- Affected People in Asia?

TN: Last September, we had a small meeting. We invited and had a discussion with some of the people’s organisations from India, Indonesia, Brazil and Ethiopia on what could be done. This September, there will be the World Congress on Leprosy where there will be academics, experts, governments. The congress is a crucial event but often organisations of the affected people are left behind. So, we came up with the idea of organising a pre-congress event where the affected people’s organisations so that it can also be a way for preparing themselves for the congress.

IPS: Why is sustainability still such a big issue for organisations of leprosy–affected people?

TN: Sustainability is not only an issue of leprosy affected people, but also for all the NGOs of the world. I don’t really have an answer here. It depends on each organisation, each leader. Every NGO, every organisation has to find its own way and its own strategy to sustain itself. Should they approach foundations, survive on external grants, seek membership fees, donations , do social business—it’s up to them. As foundations we can provide financial grant, but not forever. What we can do, however, is think together on what could be the next step.

IPS: There are many hidden cases in the world of leprosy. Can you share an example of a good action by a government that tried to act on this.

TN: In India, the government made a very brave decision. In 2016 they started a campaign to identify the endemic leprosy cases all over the country. And since then, every year, they do case detection camps. It has brought in the open many new cases that were previously hidden. It also resulted in an increase in the number of leprosy cases in the country, but after that it started to decrease as the cases were treated . So, this is an example I feel other governments can also follow.

IPS: How are you feeling now that the assembly has concluded?

TN: My expectation is very simple: this venue is for the people affected by leprosy. They should be able to discuss whatever they want to and decide whatever they want to decide.
Here, we saw is they are trying to be more pro-active, opening up,coming up with some issues, some ideas on how they can strengthen their partnership, soI am happy.