Lever for Change is excited to share an update on the collaboration between the Task Force for Global Health as a 2021 Swift Grants Awardee of the Bold Solutions Network.

Equipping Leaders to Improve the Lives of Persons Affected by NTDs

Neglected Tropical Diseases (NTDs) impact over 1.7 billion people, affecting one in five around the world (WHO). Despite the extensive burden of NTDs worldwide, persons affected by these diseases are often not given the support and care they need. This is even more true for persons affected by stigmatizing NTDs, who often face social exclusion and barriers to care. Stigma can be fought through community education and advocacy for the inclusion of persons affected by NTDs, but some NTD-affected communities lack trained advocates. Our project began with the conviction that people affected by NTDs are the best voices to fight stigma and promote inclusion in their communities.

Some stigmatizing NTDs, such as leprosy, have robust advocacy networks and strategies to confront these challenges. In the leprosy community, national organizations like IDEA Nepal bring together persons affected by leprosy to speak out against stigma, promote inclusion, and fight for the end of structural discrimination against persons affected by the disease in Nepal. Sadly, many other NTDs lack similar organizations to train advocates and community leaders. To help meet this challenge, the Global Partnership for Zero Leprosy (GPZL) worked collaboratively with the NTD Support Center and Focus Area of Compassion and Ethics (FACE) at the Task Force for Global Health to connect tools and strategies from the leprosy community with other NTD communities.

This collaboration, supported by Lever for Change’s Bold Solutions Network, developed an NTD advocacy curriculum that can be used to strengthen the capacity of persons affected by stigmatizing NTDs to advocate for stigma reduction in their rights. This curriculum offers introductory training in advocacy, which can be adapted to local contexts. It exposes trainees to skills and strategies which they can use to develop advocacy plans to address specific community needs. These include communications planning and presenting to advocacy audiences, tools for ​​community organizing, and strategies for undertaking needs assessments and developing advocacy agendas. These skills and strategies are presented in online modules that use storytelling to engage the audience in shared content.

For example, in the ‘Reaching Hearts and Inspiring Action’ module, we learn from Joy, a woman affected by leprosy in Nigeria who develops a communications plan to engage with a religious leader in her community and stop the spread of misinformation about NTDs. All the modules aim to provide information in a digestible and implementable way for a diverse audience of advocates. The modules build on one another to create a cohesive framework for patient advocacy. We believe that this curriculum, made with the help of our friends from IDEA Nepal and other leprosy advocacy organizations, will strengthen the advocacy capacity of persons affected by NTDs, decrease disease-related stigma, and improve the overall well-being of people who experience NTDs.

This is the fourth installment in a series of articles describing the impact of funding through Lever for Change's 2021 Swift Grants. Lever for Change was born of the success of the MacArthur Foundation’s 100&Change challenge and spurred the philanthropic sector to rethink its approach to achieving impact at scale. Founded in 2019 as a nonprofit affiliate of the John D. and Catherine T. MacArthur Foundation, Lever for Change has influenced over $1.7 billion in grants to date and provided support to more than 175 organizations.