The Shade Tree Project seeks to empower people with albinism (PWA) through a comprehensive three-pronged approach of improved health, economics, and education to increase life expectancy and quality of life.
PWA in Mozambique, which represent about 1 in 3,000 people, compared to 1 in 10,000 worldwide, are chronically under served and often face prejudice and violence. PWA have a lower life expectancy, 30 years old, than the general population, with an estimated 85% dying before the age of 40, mostly due to preventable skin cancer, and yet sunscreen is widely unavailable. Albinism is widely misunderstood and PWA face ostracization which prevents many from completing school, getting jobs, or participating in the community; and there has been a recent up-tick in violence fueled by the international trade of PWA body parts. The Mozambican wrote an Action Plan to Respond to the Problems and Protection of People with Albinism in 2015 but has yet to provide a budget or even inform the governing agencies of this report or its initiatives. We will enable PWA to access essential health information and health care, provide them with tools and programs to protect themselves from discrimination, violence, and cancer, enable PWA to become advocates and community leaders.
Albinism is widely misunderstood and ignored throughout the world. Few Mozambicans with albinism even understand what is albinism and how they can protect their health and their rights. People are dying at astronomical rates of easily preventable cancers and are being marginalized and face violence because of prejudice. Reducing prejudice through education can foster acceptance of PWA and increase their inclusion in government programs. While many government agencies, people in the community and PWA recognize the problems faced by PWA, there has been no movements and little to no resources dedicated to help resolve these issues. We work to provide the tools to build a strong sustainable movement that can create long-term institutional and social change. It is not uncommon to see young children suffering and dying of skin cancer or being kept in hiding because of fear of prejudice and violence.
The initial seed grant from TPP was important to our work in many ways. It allowed us to move our project from an idea into a functioning programs. The grant has allowed us to demonstrate that the issues faced by PWA in Mozambique can be globally recognized. The grant allowed us to develop a more comprehensive program and to expand our education programs beyond that for PWA and their families. The seed money provided us with the essential resources to train PWA activists and to launch our school programs which provides tools for teachers to help PWA become more successful in school and hold forums with students to help reduce prejudice through education.
The TPP impact grant will allow The Shade Tree Project to expand our work into into districts and to reach the more vulnerable and isolated populations while expanding and improving our outreach to health workers to ensure that PWA receive adequate and quality care. We have found that many health workers do not understand albinism and many times help perpetuate the mysticism and taboos surrounding the genetic condition while leaving cancers and ocular problems untreated. This money will allow us to write a Guide for Health Workers which can be presented and distributed at health posts, clinics and hospital throughout the province.