公益財団法人笹川記念保健協力財団
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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

REPORT: Tigers and Goats

Retreat explores challenges to sustaining the activities of people’s organizations.

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Manek: There are people who rely on us.

People’s organizations from five countries gathered in New Delhi at the end of January for a three-day retreat on sustainable people-centered partnership in leprosy. Organized by Sasakawa Memorial Health Foundation and chaired by Dr. Arturo C. Cunanan, chief of the Culion Sanitarium and General Hospital in the Philippines, the meeting touched on fundamental issues affecting the ability of NGOs and social movements to carry out their mission.

Taking part were the Association of People Affected by Leprosy (APAL), India; the Coalition of Leprosy Advocates of the Philippines (CLAP); HANDA Rehabilitation and Welfare Association, China; the Movement for the Reintegration of People Affected by Hansen’s Disease (MORHAN), Brazil; and Perhimpunan Mandiri Kusta (PerMaTa), Indonesia.

The gathering was a follow-up to an earlier retreat held in 2015 outside Tokyo that focused on sustaining leprosy services through the wider participation of people affected by leprosy and the involvement of new actors.

Here are 13 talking points from the Delhi retreat:

1. Sustainability is for a reason

The mission of people’s organizations requires long-term effort and commitment. From fighting discrimination, promoting social and economic empowerment, and raising awareness to counseling patients and their families, there is much to be done and people’s organizations can fill the gaps that governments can’t or don’t cover. “There are people who rely on us. As long as there are issues to be addressed, we have to continue to exist,” said PerMaTa’s Paulus Manek. But not forever: “MORHAN was born to die,” said Artur Custodio. “When we succeed in our mission, we are no longer necessary.”

2. Partnerships are important

They allow organizations to cover more ground, have a bigger impact, share resources, learn from each other and encourage each other. But partnerships come with responsibilities, too—including being transparent and accountable, reliable and efficient.

3. Reliance on external funding

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Putting heads together to plot a sustainable future

All the organizations are operating with limited resources and are reliant on external funding. There is a critical need to address the issue of sustainability and diversify their partnership base and sources of funding and income in the event that key donors withdraw support. “We have been given a wake-up call,” said APAL’s G. Venugopal.

4. Waning interest in leprosy

Funding for Hansen’s disease programs is decreasing. Governments have only limited interest in and provide limited support for projects for and by persons affected by leprosy. The perception that leprosy has been “eliminated” has had a negative impact. “Leprosy is not a sexy issue at local government level,” said PerMaTa’s Paulus Manek. Yet new cases continue to occur, stigma continues to exist, and people are still developing lifelong disability as a result of leprosy.

We cannot agree with everything the government says and call it partnership.

5. Relationship with government

In the discussions on partnership, one of the most contentious areas was on what form the relationship with government should take. In China, government approval is very important, said HANDA’s Michael Chen. In order to establish and maintain a reputation for integrity, HANDA is assiduous in complying with regulatory requirements to show that it can be relied upon. This is especially necessary in the Chinese context, where NGOs have “weak capacity, a low public profile and suffer from a lack of public trust,” he said.

But for a social movement such as MORHAN, it is not possible to fulfill its role if it is in lockstep with the government at all times, “The government does not allow our autonomy,” said Faustino Pinto—or, as APAL’s Venugopal put it more colorfully, “Partnership with the government is the partnership of a tiger and a goat.”

“Partnership is important,” said Pinto, “but sometimes we don’t always follow the same goal as the government, as many times the rights of the people are disrespected. We cannot agree with everything the government says and call it partnership.”

6. Leprosy’s negative image

Organizations reported a reluctance among companies and other potential sponsors to associate themselves with the disease because of its negative image. In Brazil, there is a “beauty culture,” said Pinto. “Companies don’t want to be linked to a disease such as Hansen’s disease.” MORHAN also noted that a crowd-funding campaign it had launched was doing poorly compared to another campaign running concurrently for animal welfare.

7. Sustainability requires a strategy

Organizations agreed that sustainability needs to be part of planning and that they need to be thinking about it now. “CLAP will die a natural death unless a strategy for sustainability is realized,” said Francisco Onde. Yet many of the organizations lack such a strategy and have limited or no capacity to develop one.

8. Capacity-building doesn’t come cheap

To develop a sustainability strategy requires investment. Are donors willing to invest in sustainability? Donors—and that includes government in particular—need to be persuaded of the importance and contributions of people’s organizations.

9. Advocacy is a hard sell

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APAL’s Venugopal: Let us create a link between us

“Donors typically want to see their donations go directly to improving people’s lives, but we cannot always say that our work has had a direct impact on our stakeholders,” said APAL’s Vagavathali Narsappa. “A lot of what APAL does is advocacy work, and the results we are achieving are invisible. We can’t say directly that pension increases are down to us. It is difficult to raise money for advocacy.”

10. Use outside experts as needed

Organizations of and for people affected by leprosy should not be afraid to turn to outside experts in order to fulfil their mission, including using experts to develop strategies for sustainability and fund-raising. Transformation poses challenges, however, such as how to retain one’s identify as an organization of and for the primary stakeholders while at the same becoming more professional.

11. Fund-raising requires funds

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Acknowledging common goals and objectives

Fund-raising requires expertise, materials and a strategy, which all cost money. In addition, an organization may need to be audited before it can qualify for funds or be part of an income-generating project, and this can be a costly expenditure when resources are limited. Organizations will need to consider whether the pay-off justifies the investment.

12. Social enterprise is not for everyone.

Not every people’s organization has the capacity or capability to engage in social enterprise, nor is social enterprise alone a sustainability strategy. Having established its credentials, HANDA is paid by the government to enhance capacity of local NGOs, but believes that such social enterprise can only ever form part of its sustainability strategy.

13. A network of people’s organizations

There was agreement that the organizations represented were operating in different social, political, legal and cultural environments, but that they had shared goals and objectives in promoting the health and well being of people affected by leprosy, fighting discrimination and fostering dignity and social inclusion. They also found there was much they could learn from each other, as the discussions had shown. “Let us create a link between us, a network,” APAL urged. “There should be a formal network.”

QUOTE

“A sustainable organization needs to be strong institutionally, financially and morally.”
– Dr. Arturo C. Cunanan