UN Expert Calls for Improved Access to Services for Persons with Albinism in U.S. and Puerto Rico

Report Highlights Disparities in Healthcare, Education, and Employment for People with Albinism, Urges Action.

The UN Independent Expert on the enjoyment of human rights by persons with albinism, Muluka-Anne Miti-Drummond, has called for urgent action to address significant disparities in access to services such as healthcare, education, and employment in the United States and Puerto Rico. During her official visit, Miti-Drummond recognized positive steps taken by the U.S. but stressed the need for more consistent measures, particularly in Puerto Rico, where access to care for individuals with Hermansky-Pudlak Syndrome (HPS) remains severely inadequate.

“Persons with albinism are recognized as individuals with disabilities, and their rights to non-discrimination based on disability are protected by the American Disability Act (ADA). In Puerto Rico, Law 109 of 2022 ensures access to specialized doctors, medications, and treatments for individuals with albinism and HPS,” Miti-Drummond stated. However, she raised concerns over the uneven access to these services across U.S. states and the dire situation in Puerto Rico, particularly for those suffering from HPS.

Hermansky-Pudlak Syndrome, commonly affecting people with albinism in Puerto Rico, requires specialized care due to associated conditions such as platelet dysfunction, inflammatory bowel disease, and pulmonary fibrosis, which may necessitate double lung transplants. “In addition to ophthalmologists and dermatologists, patients may need hematologists, gastroenterologists, and pulmonologists, especially for HPS1, the most common form in Puerto Rico,” Miti-Drummond explained. However, the high costs of care and the limited availability of medical professionals leave many individuals without adequate treatment. Waiting times to see specialists can extend to six months or more, and those without insurance are particularly disadvantaged.

Miti-Drummond also expressed concern about the lack of disaggregated data on persons with albinism, which complicates an accurate assessment of their challenges. This absence affects not only health but also impacts sectors like education, employment, and immigration. She urged U.S. authorities to address privacy concerns surrounding data collection and to implement protective protocols that would enable better analysis and resource allocation. "Without disaggregated data, it is impossible to determine the prevalence of albinism and ensure an adequate response, including proper budgetary planning," she noted.

The Independent Expert will present a comprehensive report of her findings to the Human Rights Council in March 2025, calling for targeted efforts to improve the well-being and rights of persons with albinism across the United States and Puerto Rico.