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.”