Capacity Building the Key to Fighting Leprosy

When it comes to sustainability of non-profits working in the field of leprosy, Sasakawa Memorial Health Foundation Executive Director Dr. Takahiro Nanri said that while the foundation was prepared to support organisations, a financial investment would inevitably be limited. Credit: Nalisha Adams/IPS

By Ben Kritz
MANILA, Mar 3 2019 (IPS)

Strengthening the participation of persons affected by leprosy, or SPP, has proven to be an effective strategy in reaching out to often isolated sufferers in local communities throughout Asia. A significant challenge to civil society organisations, however, is finding enough management talent to maintain and expand the programmes.

Capacity building, providing organisational and management training to SPP participants doing the heavy lifting for leprosy advocacy groups in their work in individual countries, was highlighted as a significant priority by the participants at the Regional Assembly of Organisations of People Affected by Leprosy in Asia in Manila on Mar. 3.

Starting from scratch

The challenge is made even more difficult because many programme volunteers come from marginalised communities, or have had their own education interrupted by complications or social ostracism associated with leprosy.

Amar Bahadur Timalsina, president of International Association for the Integration, Dignity and Economic Advancement (IDEA), Nepal, told IPS that capacity-building is likely the biggest problem facing his organisation. “Many of the people working with us are completely uneducated, and some are even illiterate,” Timalsina said. Many of Nepal’s leprosy patients are found in poor communities, and face significant discrimination.

“Right now, we are focusing on building the capacity of our board members and programme managers,” Timalsina said. “Fortunately, we are able to work with the Leprosy Mission Nepal, who are able to provide us with expertise in business management, finance, and social programme management.”

The discrimination that prevents leprosy sufferers from accessing education and seeking out medical and social assistance in Nepal is perhaps a bit stronger than in some other countries, as it is still part of the law in one respect. In his presentation to conference delegates, Timalsina highlighted IDEA Nepal’s efforts to amend a constitutional prohibition of marriage between leprosy sufferers and unaffected persons, and to include information on leprosy in the country’s health education curriculum.

Differing approaches

While the capacity-building challenge is a common priority, organisations in different countries have adopted different approaches to addressing it. For example, the focus of PerMaTa Indonesia, which means Gem in Bahasa, places heavy emphasis on emotional and social support for persons affected by leprosy. The organisation also directs much of its attention to youth. PerMaTa’s Yuliati explained that the social focus helped leprosy patients gain acceptance, which is particularly important for young people to have continued access to education. Over the long term, it will help the skills capacity of the organisation; in the short term, however, PerMaTa must still rely on some degree of outside expertise.

China’s Handa faces a similar challenge, but has actually been able to quantify its need for expertise. The organisation, which has about 3,500 members across 14 provinces and serves nearly 9,500 beneficiaries, has structured its board so that one-third of its members are private-sector professionals, Handa representative Qi Xiuli told the conference delegates. With this arrangement, overall policy objectives are generated by persons affected by leprosy who make up two-thirds of the board, while the professional board members take charge of practical implementation of the organisation’s initiatives.

Capacity tied to financial sustainability

Beyond the day-to-day goal of carrying out programmes and managing organisations in an efficient way, capacity-building is key to helping the various organisations secure financial sustainability.

In a group discussion, Dr. Arturo Cunanan, Director of the Philippines’ Culion Sanitarium and General Hospital and the country’s foremost leprosy advocate, pointed out the need for organisations to secure a substantial initial investment in order to be able to work on sustainability. Cunanan suggested that this might be one way organisations could address their capacity gaps.

“That initial investment may be in the form of a financial investment, but it could also be a technical or capacity investment,” Cunanan told the conference delegates.

Sasakawa Memorial Health Foundation Executive Director Dr. Takahiro Nanri pointed out, however, that a financial investment would inevitably be limited. “You can start off with grants from government or non-government sources, you can gather some financial resources in the form of membership fees, but these are limited,” Nanri said. “In order to be truly sustainable, the organisation has to create an income-generating programme,” and for that, the organisation would need sufficient expertise.

Having that capacity, however, would make achieving sustainability much easier, boosting the organisation’s credibility to potential donors. “We know you probably couldn’t generate real income to sustain your organisation for quite some time,” Nanri told the delegates. “But we [Sasakawa Foundation] could justify supporting you for, say, three years, if we could see that you were able to develop a business plan that would be viable in that amount of time.” Expertise in business and management is needed to be able to develop such plans.

Fortunately, most organisations seem to be successfully balancing the goals of becoming self-reliant and accessing enough expert help in planning and carrying out financial and operational strategies. In the group discussions, however, all the conference participants agreed that greater public awareness of their work would greatly benefit their respective organisations’ goals.

Leprosy Detection With a Personal Touch

Coalition of Leprosy Associations of the Philippines (CLAP) community outreach organisers Jennifer Quimno (left) and Michelle Ann Oreo (right). Credit: Ben Kritz/IPS

By Ben Kritz
MANILA, Mar 3 2019 (IPS)

Jennifer Quimno could put anyone at ease. So when she travels across the Philippines as part of peer to peer programme that helps identify new leprosy cases, people generally allow her to examine them.

“We met a young boy, about 16 years of age, who had symptoms of leprosy, and we needed to examine and send pictures of his skin rashes to the doctors for diagnosis,” Quimno told IPS. Quimno, herself a former leprosy patient, was able to put the teenager at ease. “One of his rashes was on his buttocks. He was a little embarrassed to show it at first, but when I asked him nicely, he let us take a look.”

That unique sensitivity toward persons affected by leprosy is a valuable resource in identifying new cases and encouraging patients to seek treatment, Frank Onde, the president of the Coalition of Leprosy Advocates of the Philippines (CLAP) explained.

“Strengthening the participation of persons affected by leprosy is the most effective way to reduce the burden on government health departments,” explained Onde, one of the keynote speakers at the Regional Assembly of Organisations of People Affected by Leprosy in Asia. The assembly is being held in Manila, Philippines, Mar. 3 to 5.

Helping their own

Under the programme organised by CLAP, former patients are trained in community outreach and help to identify potential cases for diagnosis and treatment. Using people who have personal experience with the disease helps to reduce the reluctance of leprosy sufferers to seek treatment, Onde said. Not only can the outreach workers relate on a personal level with others affected by leprosy, also known as Hansen Disease, their own experience also helps healthcare personnel make accurate diagnoses, he added.

Launched in the cities of Manila and Cebu in November 2018, the programme, ‘Strengthening Participation of People Affected by Leprosy in Leprosy Service’, known as SPP, is currently working among known affected communities. It pursues the twin objectives of gathering demographic information to update the Philippine Department of Health database and identifying relapse or new leprosy cases.

Quimno, who is a field health officer with the regional Department of Health office in Cebu, said that personal experience helps to build trust. “We know what they are experiencing,” she explained. “We can also tell them exactly what the consequences of not seeking timely treatment will be.”

Coalition of Leprosy Associations of the Philippines (CLAP) president Frank Onde (left), and CLAP volunteers Mark Anthony Esparas (centre) and Ariel Lazarte (right). Credit: Ben Kritz/IPS

Grassroots connections

While CLAP’s activities are officially supported at the national government level—the coalition is represented on the Department of Health’s National Leprosy Advisory Board—it is at the smallest level of government where the initiatives of the coalition’s individual organisations are substantially embraced.

“We coordinate with local government units at the municipal and barangay [village] level, including the mayor’s office and the city or municipal health official’s office,” Quimno explained. “Since our individual member groups are the ones doing most of the work right in their own communities, they are really embraced by their local officials.”

Mark Anthony “Macoy” Esparas, a CLAP outreach volunteer in Manila, agreed. “We do receive a lot of help from the local governments,” he told IPS. “What we do is helping them as well.”

CLAP advisor Joseph “Boyet” Ongkiko highlighted the success of one CLAP member group in Cotabato, Mindanao, southern Philippines, which formed a cooperative of motorcycle taxi drivers to provide livelihoods for people affected by leprosy. “At first, the community was reluctant to patronise the drivers,” Ongkiko told the conference attendees. “Now, they have been accepted so well, that the cooperative even has non-Hansenite members.”

Other livelihood activities pursued by the member groups of CLAP—the coalition represents a total of 19 local organisations across the Philippines—include production and marketing of various household products, clothing, and small-scale farming.

Financial sustainability challenge

While CLAP’s initiatives are steadily gaining traction among people affected by leprosy and local communities alike, the organisation is concerned about its prospects for sustainability.

“That is our biggest challenge right now,” Onde said. “At the moment, our financial support is really only coming from the Sasakawa [Memorial Health] Foundation, and we would like to better secure our future.”

Financial sustainability is a common worry for leprosy advocacy groups throughout the region, but in the Philippines, Onde explained, CLAP and other organisations face a unique challenge. In 2013, a large-scale conspiracy dubbed the “Pork Barrel” scam and involving the misappropriation of billions in legislators’ development funds was exposed. Funds intended for local projects were diverted to fabricated non-government organisations and then pocketed by the scam perpetrators, including a number of lawmakers.

“Since the Pork Barrel scam, it has become difficult for a lot of civil society groups, not only us, to attract donors,” Onde said. “So one of our important tasks is to try to share information about what we’re doing to convince potential financial supporters that we are a legitimate, sustainable organisation.”

One advantage for CLAP is its close connection to the government’s own leprosy control efforts. “We have a consultative role in the government’s National Leprosy Control Programme and the Leprosy Roadmap 2016-2022,” Onde said. “That does help give us some credibility, and of course, we strive to do good work to match that.”

First Asian Leprosy Assembly Calls for Greater Social Inclusion for the Affected

Amar Bahadur Timalsina, president of IDEA, Nepal, a group founded by people with leprosy for people with leprosy, is in agreement that there needs to be greater inclusion for those affected by the disease. Timalsina was affected by disease, also known as Hansen’s disease, as a child. Credit: Stella Paul/IPS

By Stella Paul
MANILA, Mar 3 2019 (IPS)

Growing up in Kathmandu, Nepal, Amar Bahadur Timalsina wasn’t allowed to attend school as a young boy because he was affected by leprosy. But decades later, after treatment and being able to re-integrate into his community, the boy who was once denied an education is now inspiringly the principal of a school of 400 students.

“I suffered from leprosy when I was 12 years old. At that time I was forced to leave my village and my community,” Timalsina told IPS.

But after that Leprosy Mission Nepal supported me with a recommendation letter, he was subsequently able to attend an orphanage “where I got an opportunity to continue my studies.”

“At my school there are 400 students and 30 staff. Now if I go to my village, there is no discrimination, no stigma and everyone welcomes me like any other person,” he said.

Timalsina, who is president from the International Association for the Integration, Dignity and Economic Advancement (IDEA), Nepal, a group founded by people with leprosy to support others with the disease, is in agreement that there needs to be greater inclusion for those affected by it.

Participants at the Regional Assembly of Organisations of People Affected by Leprosy in Asia kicked off today, Mar. 3 in Manila, Philippines, made a vocal appeal to adopt and embrace greater social inclusion and build a stigma-free society for those affected by leprosy

The three-day regional event, which is the first of its kind to be held, was organised by the Philippine government-run Culion Sanitarium and General Hospital (CSGH), the Coalition of Leprosy Advocate of the Philippines, and the Sasakawa Memorial Health Foundation (SMHF). The foundation has been actively supporting the fight to eradicate leprosy worldwide since 1975.

Participants at the Regional Assembly of Organisations of People Affected by Leprosy in Asia kicked off today, Mar. 3 in Manila, Philippines, made a vocal appeal to adopt and embrace greater social inclusion and build a stigma-free society for those affected by leprosy. Credit: Stella Paul/IPS

“The biggest challenge before us today is stigma,” said Dr. Maria Francia Laxamana, Assistant Secretary in the Philippines Department of of Health and one of the key speakers at the conference.

According to Laxamana, only one in every four in the Philippines seek out medical treatment for the disease and social stigma is one of the main reasons why they hide their condition. So, for the Philippines to achieve the global target of reducing leprosy cases by 2020, it would be crucial to have policies that could look at the disease in the local context and can provide solutions that are locally applicable.

For example, we should not be looking at leprosy just as a disease, but take a holistic approach and provide the affected people with a package of support that includes not only drugs, but also education, vocational skill trainings and employment. Such a package will not only help improve their quality of life, but also pave the way for greater social inclusion, resulting in removal of social stigma, she said.

“Integration is very important and we as a foundation, hope, we can contribute to the integration [of people affected by leprosy] with the society,” said Dr. Takahiro Nanri, Executive Director of SMHF and the second key speaker of the day. Reiterating the dedicated and continuous support of the foundation to eradication of leprosy, Nanri informed that SMHF has been organising regional assemblies across the world, including Africa, Latin America and the current one in Asia, to facilitate greater engagement and participation of all experts and leaders working on the disease.

Alice Cruz, United Nations Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, pointed out that social exclusion and stigma was having a devastating effect particularly on the children of those affected by Hansen’s disease. Addressing the assembly virtually, Cruz emphasised the need for sensitisation of school teachers because in many countries children with leprosy were expelled from schools by  the teachers themselves.

“Teachers in endemic ares should be trained on leprosy ad the schools should be one of the first places to raise awareness on leprosy’s signs and symptoms, but also on the human dignity and rights of the persons affected,” she said.

Dr Arturo Cunanan, chief of CSGH, said that while those working in the field always talk about the social stigma and discrimination that people with leprosy face, the question is how to measure this. “Usually, government will not address issues of human rights, not unless they know about the issue of burden.”

There are representatives from six nations in the region attending  the assembly: Philippines, Japan, Indonesia, China, Nepal and Kiribati. While some are working with the government at the policy level, others are working directly with the affected communities and are expected to  share their respective experiences and impacts to find a common, collective way to fight leprosy more effectively in the future.

Q& A: We Need a Holistic Approach to Eradicate Leprosy

Dr Maria Francia Laxamana, the Assistant Secretary in the Philippines Ministry of Health, eels strongly about the social exclusion and stigma experienced by the leprosy patients and is eager to make a notable change in the way the society perceives leprosy and those who live with it. Credit: Stella Paul/IPS

By Stella Paul
MANILA, Mar 3 2019 (IPS)

Dr. Maria Francia Laxamana is the Assistant Secretary in the Philippines ministry of health. With nearly two decades of  work both as a senior government official and also as an expert in several non-government organisations, Laxamana has deep insight into the issue of leprosy in this Southeast Asian nation and the challenges faced by those who are affected by the disease.

She feels strongly about the social exclusion and stigma experienced by the leprosy patients and is eager to make a notable change in the way the society perceives leprosy and those who live with it.

On the sidelines of the ongoing  Regional Assembly of Organisations of People Affected by Leprosy in Asia in Manila, Laxamana tells IPS how a new, holistic approach is needed to eradicate leprosy  and  improve the quality of life for all leprosy patients. She also informs how small measures like helping the children of leprosy-affected families can help remove societal stigma and  pave ways for social inclusion.

Inter Press Service (IPS): How and at what point is it decided to separate a family from the community?

Dr Maria Francia Laxamana (MFL): Previously, it was the government that decided. If a child tested positive, it would be separated from the mother. That used to be very harsh.  But now, its not like that anymore. Now if a baby shows the symptoms, the baby is tested and if the results are positive, then the baby is treated along with the mother and the father, but it stays with the parents. The treatment now is family based.

IPS: Typically, how who are the leprosy patients in the Philippines?

MFL: Actually, generally those who are afflicted by leprosy are poor people. The main reasons are that  (lack of) nutrition, lack of awareness, remote location of their areas and lack of access to the services.

IPS: Have you met anyone whose condition matches this? How did it change you?

MFL: Yes. In the Autonomous Region of Muslim Mindanao, I met a woman – a mother of a 2 year old boy. She already had visible physical symptoms and her hands were already deformed. I asked her, have you been receiving the treatment? She said, ‘No, I don’t go to the health center anymore because the staff there say I can infect them’.  So I told her, you have to be tested before anyone can say you are infective. But in my mind, I thought, so this is what is the progress we have had: we have done advocacy, awareness generation  – everything and yet the staff here are not willing to go near the patients.

That’s when I learnt that there had not been any amendment or reviews of the previous policies. I also asked myself, why is the budget for leprosy so low? And I came to think that there maybe also lapses in our government, maybe leprosy is not  a priority for  our government. Maybe they think that there isn’t a Hansen’s disease here in the Philippines anymore.

IPS: You had left the government job to work with the non governmental organisations, such as USAID, EU, Save the Children, among others. But you returned in 2016. How are you working differently this time?

MFL: When I was offered the position of the Assistant Secretary–which is a part of the Executive Committee (a high level decision-making group), I thought that I could now make actual impact by discussing an issue with my fellow committee members and making constructive recommendations for deciding on a new policy. For example, while working for the non-government organisations, I discovered that we are making policies without any inclusion of inputs from local level, from the communities. And that is something I can now raise this issue to the national government.

IPS: What changes do you expect to see in next five years?

MFL: I have been talking to the sanatoriums in the Philippines. They have many in-house lepers who are not active anymore, they are just living in the sanatoriums compounds. What we did was turning some parts of the sanatoriums into general hospitals. We can have fund the hospitals with facilities and equipments, so that outside patients can go in for treatment and the in-house patients can continue to get treated, but the outsiders will know that they are not active anymore. This will augment financial resources.

So, right now I am telling the sanatoriums that let us develop the standards based on the facilities , equipment and the human resources that they need. Once we have this standard, we can propose to the government for a specific, yearly budget  allocation for the leprosy programme.

IPS: You are very vocal about social inclusion of the affected people and their families. How can this be achieved ?

MFL: A great way to do this is to take a holistic approach by providing the affected people opportunities to education, employments, training etc. For example, in Culion, I met a leprosy affected family whose daughter wanted to go to college and become a nurse. So I said, maybe we can ask the governor of the state to provide her a scholarship. Now, if such a child is brought to a college and given the opportunity to study, she can interact with a hundred others there and inform them about her family, their life. People around her can understand that she is not infective – this way a new level of engagement can begin.

Q&A: Caught Up in the Opportunities of Climate Change and Less So With Adaptation

Ronald Jackson, Executive Director of the Caribbean Disaster Emergency Management Agency (CDEMA), told IPS in an interview that the ambitions around establishing strong early warning systems in the Caribbean date back to the early 2000s. Credit: Desmond Brown/IPS

By Desmond Brown
BRIGDETOWN, Mar 3 2019 (IPS)

Caribbean countries have been signalling their willingness to dedicate time and resources to implement and sustain effective multi-hazard early warning systems.

Most countries located in the hurricane belt face being impacted during the yearly Atlantic Hurricane Season. But all Caribbean countries face another challengeclimate change

Ronald Jackson, Executive Director of the Caribbean Disaster Emergency Management Agency (CDEMA), told IPS in an interview that the ambitions around establishing strong early warning systems in the Caribbean date back to the early 2000s.

But he said, “it still remains incipient, despite the fact that there has been some level of investment in the area over time.”

“I think Jamaica would have been the farthest advanced way back in the 90s with the Rio Cobre warning system which included a community warning infrastructure as well as telemetre gauges linked to the met offices and to the National Disaster Management Office,” he said

Jackson believes countries “have gotten more caught up . . . in the opportunities of climate change . . . and less so with advancing what is considered to be adaptation.”

The CDEMA head said his unit has been working with its partners to look at framing a common vision, recognising the need for a more comprehensive investment in establishing people-centred early warning systems at national level.

“We have so far delivered a solutions package for four of our members—Antigua & Barbuda, Dominican Republic, Saint Lucia and St. Vincent and the Grenadineslooking at their gaps and using that to define the priority areas for investment to establish these early warning systems.”

Excerpts of the interview follow:

Inter Press Service (IPS): What is the state of early warning systems in the Caribbean?

Ronald Jackson (RJ): We are trying to implement interventions around an integrated early warning systems agenda in all our 18 states by 2024, which is the sort of end cycle of this particular strategy. We’ve broken that up into bite size amounts from the point of view of how we are going to try to attract investments at a specific juncture over the life of that strategy, but by 2024 certainly to address the needs of the 18 [Caribbean Community] CARICOM member states as it relates to integrated people-centred early warning systems.

In Guyana for example, they don’t have hurricanes, but they do have flood issues which would require them looking at a flood warning system that is linked to tropical cyclonic events. A country not faced with challenges related to significant flood events may also want to look at their tsunami warning systems. So, we are targeting having a full system in each of our states by 2024.

IPS: What, if anything, would you like to see countries do differently?

RJ: We have gotten more caught up I would think in the opportunities of climate change, which is really the energy aspect of it, and less so with advancing what is considered to be adaptation. There is more of a heavier occupation on the opportunities of climate, which is good.

The opportunities are in the area of renewable energy and how best we can capitalise on that and I think it is a necessary process that we must embark on and embark on fully because of the benefits to be derived.

You can reduce the cost of energy, allowing you to release additional resources into areas of resilience building—one of which is early warning. But the area which is categorised as adaptation in climate change, which is where you will see people use the language more around risk reduction and prevention, is an area that has not gotten the same level of focus as the climate mitigation aspect which is where you look at clean energy, reductions of emissions and so on. That for us is where the greatest threat is. The human security element of climate change is where we should be focusing heavily because we’re talking about people being displaced. You’re talking about floods, you’re talking about the loss of livelihoods. That’s where the greatest threat for Caribbean Small Island Developing States (SIDS), and in fact any developing island nation, lies. They have to face the challenge of having limited land masses and resources and having that constantly being impacted by the changing climatic conditions—sea level rise, saline intrusion, water scarcity, flood conditions and other environmental and health related issues—all aligned to climate change.

IPS: Given the challenges Caribbean countries have been facing, could it be that there still exist some misconception regarding adaptation?

RJ: As it relates to adaptation, we seem to think a lot of the interventions required are new. They are not new, we’ve been grappling with those things that are packaged under the theme of adaptation for some time. These are largely programme areas at national level which if you look at the analysis they have never, in my mind, in the last 20 years or decade or so received very strong budget allocations. That’s what the analysis is showing us. There could be a lot of questions or reasoning around that. It could be how countries determine what are the main priorities of the day given the limited resources and the fiscally strangling environment in which they are operating.

IPS: Which takes us to the issue of funding. As is the case with almost everything else, procuring funds is an issue. What has been the experience of countries getting funds for sustaining Multi-Hazard Early Warning Systems?

RJ: There is programme support from international sources. The challenge there is that it’s been ad-hoc—either financing one element or two elements of the four elements of people-centred early warning. Part of it is also sustainability because there are different elements that exist. The problem also is, can you maintain the infrastructure? Can you replace the parts in a timely manner? So, there is also a sort of maintenance issue that is linked to budget allocation.

*Interview edited for clarity.

A Leprosy-free Philippines by 2020?

By Stella Paul
MANILA, Mar 3 2019 (IPS)

Dr Maria Francia Laxamana, assistant secretary of health in the Department of Health, Philippines outlines her recommendations for a leprosy country by 2020.

She spoke to IPS the first ever Regional Assembly of Organisations of People Affected by Leprosy in Asia.

The three-day regional event was organised by the Philippine government-run Culion Sanitarium and General Hospital (CSGH), the Coalition of Leprosy Advocate of the Philippines, and the Sasakawa Memorial Health Foundation (SMHF). The foundation has been actively supporting the fight to eradicate leprosy worldwide since 1975.

According to Laxamana, only one in every four in the Philippines seek out medical treatment for the disease and social stigma is one of the main reasons why they hide their condition.

For the Philippines to achieve the global target of reducing leprosy cases by 2020, it would be crucial to have policies that could look at the disease in the local context and can provide solutions that are locally applicable.