Facts and Norms Institute Submits Key Research on Albinism Health Rights in Argentina to UN Independent Expert
- Henrique Napoleão Alves
- Apr 23
- 3 min read
BUENOS AIRES, Argentina – April 23, 2025 – The Facts and Norms Institute has submitted a comprehensive report detailing the state of the right to health for persons with albinism in Argentina to the United Nations.
This submission responds to an invitation of written inputs by the UN Independent Expert on the enjoyment of human rights by persons with albinism, Ms. Muluka-Anne Miti-Drummond.
The Institute's report, titled "The Human Right to Health of Persons with Albinism in Argentina: Input to the United Nations Independent Expert on Albinism," addresses a significant research gap concerning the specific human rights situation of persons with albinism in the country.
It provides crucial data and analysis focusing on skin health and skin cancer, recognized as major health concerns due to the high morbidity and mortality rates associated with albinism.
Leveraging its expertise in human rights research and international law, the Institute employed a robust, multi-method approach. The research, conducted by human rights expert Professor Henrique Napoleão Alves and medical doctors Hugo Lana Devita and Olivia Murga, involved:
Original qualitative empirical research, featuring semi-structured interviews with key stakeholders in Argentina.
Extensive legal doctrinal research of Argentina's international commitments and domestic legal framework.
Comprehensive literature and document review.
Analysis of media sources.
The empirical research component was particularly vital, gathering firsthand accounts and expert perspectives. The Institute gratefully acknowledges the invaluable contributions of the interviewees:
— Daniel Esteban Soria, Julio García, Monica Mariel Brassara, Míriam Elizabeth Choulet, and Guillermo Daniel Rodríguez, members of the Fundación Nacional de Albinismo Simplemente Amigos (FUNDASA);
— Patricia Avendaño de Generoso, a mother of two girls with albinism and a defender of the rights of persons with albinism; and
— Dr. Ricardo Daniel Villagra, a physician who is also a person with albinism.
Their insights provided critical context on the lived experiences, systemic barriers, and practical realities faced by persons with albinism when seeking healthcare in Argentina.
Key findings highlighted in the report include:
While Argentina possesses a strong legal framework incorporating international human rights treaties related to health and disability, there is a significant gap between law and practical implementation, with no specific national law for albinism currently enacted.
Persons with albinism face substantial barriers to accessing necessary healthcare, including high costs for essentials like sunscreen and visual aids, geographical disparities in service availability, and a lack of specialized knowledge among many health professionals.
Sunscreen access remains a critical challenge, as it is often classified as cosmetic rather than medicinal, excluded from essential medicines lists and insurance coverage, and prohibitively expensive for many families.
Public awareness and education initiatives specifically targeting albinism are largely absent at the national level, with civil society organizations like FUNDASA playing an essential role in filling this void.
Systemic issues, such as the denial of essential supplies by health insurers, force individuals and families to resort to legal action to secure their rights.
"The powerful testimonies from individuals with albinism, their families, advocates, and medical professionals were crucial in painting an accurate picture of the challenges involved," said Professor Henrique Napoleão Alves. "We hope this research provides valuable evidence to the UN and contributes to positive change."
The Facts and Norms Institute is committed to promoting education, justice, and human rights through rigorous research and other educational initiatives. This submission reflects the Institute's dedication to collaborating with international human rights mechanisms to highlight the situations of vulnerable groups.
The full submission provides detailed analysis and references supporting these findings:
Contact:
Professor Henrique Napoleão Alves
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