United States: Wider action needed to improve lives of all persons with albinism and HPS, says UN expert

WASHINGTON D.C. – The UN Independent Expert on the enjoyment of human rights by persons with albinism, Muluka-Anne Miti-Drummond, today urged action to remedy glaring disparities in access to services, including education, health and employment, in the United States mainland and Puerto Rico.

Ending an official visit to the country, Miti-Drummond said in a statement she recognised several positive initiatives by the U.S. but more measures were needed, especially in Puerto Rico, to ensure uniform access to services throughout the country.

“As persons with albinism are recognised as persons with disabilities, their right to non-discrimination based on disability is protected by the American Disability Act (ADA), while in Puerto Rico, Law 109 of 2022 seeks to ensure persons with albinism and Hermansky-Pudlack Syndrome (HPS) have access to necessary providers and specialist doctors, as well as drugs and treatments,” the Independent Expert said.

“However, I am concerned over the differences in access to services across several States in the mainland and in Puerto Rico the situation for those with HPS is even more dire due to the seriousness of the condition and required specialised care.”

Miti-Drummond said that in addition to lack of melanin and visual impairment, persons with HPS have a platelet dysfunction leading to prolonged bleeding, inflammatory bowel disease and pulmonary fibrosis, eventually requiring a double lung transplant. As well as ophthalmologists and dermatologists, they may need to consult hematologists and gastroenterologists. Those with HPS1, which appears to be the most common type in Puerto Rico, will require access to pulmonologists.

“These services are not only out of the financial reach of most persons with albinism who do not have medical insurance that covers this, but there is a shortage of relevant professionals and the waiting list to see them can be as long as six months or more,” the Independent Expert said.

“I am also concerned over the absence of disaggregated data on albinism, not only in relation to health, but also education, employment, immigration, as well as other areas of life, making it challenging for an informed analysis of the situation of persons with albinism.”

Miti-Drummond said authorities have privacy concerns about data collection but urged them to explore and ensure appropriate data protection protocols.

“Without appropriate disaggregated data it is impossible to identify the prevalence of albinism in the country, the distribution of persons with albinism, and ultimately to ensure an appropriate response to the challenges they face, including the allocation of an appropriate budget.”

The Independent Expert will present a detailed report on her visit to the Human Rights Council in March 2025.