Women affected by leprosy speak out about COVID-19 challenges

14 December, 2020 | Global Partnership for Zero Leprosy

Persons affected by leprosy — those with first-hand experience of the disease — are uniquely equipped to help us understand how to address  pandemic-related challenges. Now, with new information from a series of consultative calls, governments and NGOs can learn from persons affected by leprosy who are leading local COVID-19 emergency response efforts.

At the start of the pandemic, the Global Partnership for Zero Leprosy (GPZL) anticipated barriers to health care for persons affected by leprosy worldwide—especially in India, Brazil, and Indonesia, where the numbers of persons affected are highest. In April, GPZL established a COVID-19 emergency response working group to respond to this issue, and looked to the International Association for Integration, Dignity and Economic Advancement (IDEA), Alice Cruz, UN Special Rapporteur for the elimination of discrimination against persons affected by leprosy and their family members, and Mathias Duck, chair of the ILEP Panel of Persons Affected, for support. Together, they formed the Emergency Advocacy for Persons Affected working group, which conducted seven consultative calls with more than 100 individuals from more than 25 organizations and 22 countries. While the first six calls covered different geographical regions, the final call surveyed women affected by leprosy all around the world.

In the resulting consultative calls report, persons affected by leprosy not only share first-hand knowledge of their community’s needs, but also provide recommendations for how NGOs and government leaders can meet these needs. Across regions, consultants identified challenges related to access to health care, fundamental goods, government support, stable livelihoods, and COVID-19 information. They also discussed intersecting vulnerabilities, such as age, gender, race, and health-related stigma. Many women in particular drew attention to the burdens of health protection, education promotion, and family life maintenance, which fall most heavily on women during the pandemic.

We asked six of these women who spoke with us during the consultative calls to share the concerns of the community of persons affected in a video. By learning from these women affected by leprosy, the NTD community can strengthen strategies to reach no discrimination, no stigma, and no disability for persons affected by leprosy and other NTDs worldwide. And by looking to the experts on the ground, including those who have experienced NTDs, NGOs and governments can better fill in the gaps in COVID-19 response.

To learn more about the challenges faced by persons affected during the COVID-19 pandemic, read Working Group Two’s Consultative Calls Report. To learn more about the ways governments are NGOs are responding to the needs of persons affected, view our COVID-19 Fact Sheet and Questionnaire Results, a compilation of all the information we’ve received about the resources available to persons affected around the world.