Lesotho: Removing barriers to the rights of persons with albinism critical to improving lives, says UN expert

MASERU (19 April 2024) – A UN expert today urged the Lesotho authorities to prioritise removing barriers to the enjoyment of rights by persons with albinism, saying it would vastly improve their lives.

“Concrete measures focused on the specific needs of persons with albinism can have far-reaching impacts including on quality of life and life expectancy,” said Muluka-Anne Miti-Drummond, the Independent Expert on albinism, in a statement at the end of a 10-day visit to the country.

Persons with albinism experience serious barriers including stigma and discrimination due to colour and visual impairment, lack of access to healthcare, including sunscreen and visual aids, as well as lack of access to education and employment which in turn, have led to poverty.

“Many measures to address these barriers are relatively achievable and inexpensive to implement – for instance the provision of sunscreen through the public health system to prevent life-threatening skin cancer, a more affordable option than skin cancer treatment, reasonable accommodation in schools and work-place settings, and having a robust nationwide campaign to educate and raise awareness on the cause of albinism and care for those with albinism,” Miti-Drummond said.

“All these issues intersect and have placed persons with albinism in a continuum of struggles and hardships that has prevented them from enjoying their human rights on an equal basis with others,” the expert said.

Although there were some encouraging testimonies, Miti-Drummond said she heard far more cases involving bullying, microaggressions, othering and emotional trauma.

“I have met people with albinism who are accepted and loved, which has clearly resulted in more successful and fulfilling lives. However, I have also met with others who are segregated within their own homes due to their albinism, mothers who have been abandoned because their children were born with albinism, and young learners who have dropped out of school because of bullying and lack of financial means,” the expert said.

She found that challenges were more acute in rural areas. “In one of the most remote areas of Thaba-Tseka, some people with albinism are not accepted in their communities, have never heard of sunscreen or visited a health care facility,” Miti-Drummond said, describing the case of a young pregnant woman with albinism who had been compelled to walk for two hours through mountainous terrain to get to the nearest hospital to receive maternal care.

“We need to step-up efforts to support, equip and empower persons with albinism. Political will and strong co-ordination among stakeholders is crucial,” the expert said.

“Social protection programmes need to also recognise persons with albinism, who can also be persons with disabilities due to visual impairment and severe susceptibility to skin cancer, when assessing eligibility for financial support and grants,” Miti-Drummond said.

“Including sunscreen in the national Essential Medicines List and subsidising visual aid and devices can go a long way to alleviate hardship for persons with albinism,” she said.

Miti-Drummond added that the lack of attacks in the country should not create a sense of complacency when it comes to addressing the needs of persons with albinism.

She encouraged a multi-sectoral approach to effectively tackle existing challenges and urged all actors, including traditional leaders and community members, to work together.

The expert thanked the Lesotho authorities for initiating the invitation for her visit and for their support and co-operation. She will present her report to the Human Rights Council in March 2025.