Challenges such as delays in receiving protective creams and the lack of accessible screening services, were on June 13 highlighted by people with albinism in Rwanda. The concerns were raised during the International Albinism Awareness Day marked under the theme “Demanding our rights: Protect our skin, preserve our lives”. ALSO READ: Albinism Awareness Day: Tracing progress of people living with albinism in Rwanda Dieudonné Akimaniduhaye, the president of the Organisation for the Integration and Promotion of People with Albinism (OIPPA), said delays in distributing sun-protection creams and the absence of regular skin screenings are exposing people with albinism to life-threatening conditions. “Around three months ago, these creams were distributed through district pharmacies. Now, some of them are supplied via Zipline, but many health centre staff are unaware of this change. We urge the government to inform health facility managers accordingly,” he said. “Every week, I receive at least one call from a member who hasn’t received their cream. Some health centre heads refuse to retrieve the supplies out of concern that Community-Based Health Insurance (Mutuelle de Santé) will not reimburse the costs.” ALSO READ: Shifting perceptions: Celebrating strengths and fostering inclusion for persons with albinism “We lose at least one member each year to skin cancer. There are people who had been receiving treatment and support, but still passed away due to late detection,” he said. Educational barriers Akimaniduhaye also called for improved support for learners with albinism, especially those with low vision. “Students need to be seated at the front of classrooms and provided with exam papers in larger font sizes. Teachers should be trained on how to support learners with albinism, and schoolchildren should be educated about the condition to foster inclusion,” he said. ALSO READ: Persons with albinism decry limited access to sun protective gear He noted that stigma remains a challenge, particularly among families which hide their children with albinism due to societal misconceptions, including beliefs linking the condition to witchcraft. “This prevents children from attending school or participating in income-generating activities, trapping them in poverty. We need dedicated programmes to support their economic empowerment, including access to loans,” he said. Misconceptions and safety risks Akimaniduhaye highlighted a disturbing case from a recent project on sexual and reproductive health. “One of our members narrowly escaped sexual abuse by someone who falsely believed that sleeping with a person with albinism could cure HIV. While we don’t yet have data to quantify the problem, it is a serious concern,” he said. Jacqueline Nyirabasabose, a resident of Musanze District, said their creams are supposed to be accessed through Mutuelle de Santé but often arrive late. “We’re meant to receive them monthly, but it can take up to three months. Without the cream, we try to protect ourselves with clothing, but our skin still gets damaged when exposed to the sun,” she said. “Stigma has reduced compared to the past, though some offensive nicknames persist,” she added. Musician Aubea Mugara said he has experienced discrimination in the entertainment industry. “Sometimes when I win competitions, people claim I won out of sympathy rather than merit. At outdoor performances, organisers often forget to provide shelter from the sun, which puts us at risk,” he said, adding that school textbooks often use small fonts. “Our eyes struggle with small print. Educational materials should be printed in larger fonts for better accessibility.” The cost of protection Divine Nyirahabiyambere, a mother of three boys with albinism from Kinyinya Sector in Gasabo District, said delays in accessing creams remains a challenge. “We rely on Mutuelle de Santé to access the creams, but sometimes they are delayed for two months. In the city, those who can afford it buy them from pharmacies, but one cream costs Rwf15,000 and lasts just three weeks for one child,” she said. “Things are better now than they were a decade ago. When my first son was born 10 years ago, we only received creams during awareness events, not through public health insurance.” Sylvie Nyirabugenimana, a disability-inclusive communication officer at the National Council of Persons with Disabilities (NCPD), acknowledged progress in supporting people with albinism but noted that gaps remain. “We appreciate efforts to supply creams, but some beneficiaries do not report to health facilities, making it difficult for staff to plan properly. We encourage them to report challenges they face, including health centres that may not stock the creams,” she said, emphasising that the most pressing issue is the lack of accessible skin cancer screening. “NCPD is advocating for district hospitals to offer regular skin checks. People with albinism must also be educated about early warning signs and how to care for their skin to avoid late diagnosis.” A national study is underway to determine the actual number of people with albinism in Rwanda, she added. While the 2022 census recorded more than 1,800 people, Akimaniduhaye said new estimates suggest the figure may exceed 5,000.
