As an international network of persons who have experienced a neglected tropical disease, and their family members, friends, and support network, we advocate for the following.
Commit to inclusion of persons who have experienced a neglected tropical disease [people] in all areas of society, to promote human rights, to foster empowerment, and to end discrimination.
Provide capacity building for organizations of people to enhance advocacy skills.
Strengthen the role of people in prevention and control as employees, volunteers or through self care groups to include:
*participating in technical and awareness committees; *assisting health workers in patient tracing; *detecting symptoms in a culturally sensitive manner, especially in remote areas; *supporting newly diagnosed patients and family members throughout treatment and rehabilitation; *supporting health workers with patients who are non-compliant; *administering medication in communities where there are no health units; and *preventing disability.
Improve diagnosis, treatment and rehabilitation of people including:
*address continued use of “elimination” language, especially at the national level, which has resulted in a loss of resources in detection and treatment; *ensure provision of the highest quality of care available, including access to: medication; medical facilities; skin smears, biopsies and immunological diagnostics for diagnosis; and health technology advances such as the PCR for Hansen's disease; *ascertain that informed consent is obtained to include that the taking of medication for prophylaxis or treatment of disease is understood; *provide holistic approach to treatment that includes counseling; *lobby at all levels of government for specialized training of primary health workers on diagnosis of neglected tropical diseases; and *link with resources for employment or training when needed.
Prevent disease-related disabilities to include:
*prevent disabilities through early detection; and *ensure assistive technology devices including custom footwear are available and accessible.
Include neglected tropical diseases in the discussion of other issues with shared challenges.
Promote educational opportunities and support programs for people to become self-reliant, to promote greater social inclusion and to foster self-esteem.
Support the education of children who live in Hansen’s disease communities.
Expand social science research to update understanding of impact of a neglected tropical disease on individuals’ lives through:
*create an effective communication link between academics and people to allow individuals to express themselves in their own way without intimidating academic language; *partner with people in social science research; *update the understanding of stigma and discrimination through researching individuals’ situation who live in their homes during treatment, rather than segregated communities; *assess social and economic situation of people living in the community by conducting national surveys; and *use research results to create programming to ensure success in community after treatment.
Encourage and financially support individuals in presenting their expertise at international, national and local meetings
Continue to repeal discriminatory legislation.
Reduce digital divide to expand participation
Increase awareness and advocacy through discussions in churches, mosques, and schools and with traditional healers.
Ensure that individuals diagnosed before a cure, especially those living in segregated communities are able to live their remaining days in dignity.
Promote recognition and respect of people’s extraordinary courage from the past until today, and through this understanding affect positive change.