Daniel Otera
The Albinism Association of Nigeria (AAN) marked the 2025 International Albinism Awareness Day (IAAD) with a resounding call for inclusion, urgent healthcare reform, and protection of the rights and dignity of persons with albinism (PWAs). Held in Abuja on Friday, the event drew stakeholders from government institutions, civil society, and the disability rights movement under the theme: “Demanding Our Rights: Protect Our Skin, Preserve Our Lives.”
Speaking during the event, National President of the AAN, Dr Mrs Bisi Bamishe, underscored the growing health emergency within the albinism community, particularly skin cancer, which remains a leading cause of death among persons with albinism in Nigeria.
“Many of our members are dying daily because they cannot afford treatment for skin cancer. We appeal for urgent integration of skin screening and treatment into the National Health Insurance Scheme (NHIS),” Dr Bamishe said.
According to the International Agency for Research on Cancer (IARC), Nigeria recorded over 1,300 new cases of skin cancer in 2024, with persons with albinism accounting for a disproportionately high percentage due to extreme UV vulnerability. The Albinism Association of Nigeria estimates that at least 2 in 5 PWAs will develop skin cancer before age 40 without preventive care like sunscreen and regular screenings.
Dr Bamishe praised the Disability Rights Fund (DRF) for funding life-changing initiatives in inclusive education, healthcare access, climate resilience, and policy advocacy across the country. These projects, she said, have helped place albinism inclusion on the national development agenda.
The AAN President celebrated the growth of the association’s reach, with 26 active state chapters and more expected. She highlighted new affiliations with umbrella disability bodies such as JONAPWD and NCPWD, as well as improved national recognition and a dedicated office space now in its second year of sustained operation.
“Through strategic partnerships, we are laying the groundwork for long-term social integration,” Dr Bamishe noted.
Yet, she acknowledged persistent structural disadvantages, particularly for students with albinism who face academic setbacks due to visual impairments. She called for full implementation of the National Albinism Policy on Education and timely provision of learning aids.
“Our children are being left behind, not because they lack intelligence, but because they lack support,” she said. A 2023 survey by the National Commission for Persons with Disabilities (NCPWD) found that over 70% of students with albinism in public schools lack access to assistive devices like magnifiers or large-print books, leading to poor academic performance and high dropout rates.
In a document obtained by The Journal, Chaplain Favourite C. Chukwu, an executive member of AAN in Ebonyi State, decried the growing exploitation of persons with albinism on social media. He described it as a form of digital abuse, where PWAs are targeted in skits, memes, and prank videos that perpetuate stereotypes and ridicule.
“This is not entertainment. It is emotional and psychological abuse,” Chukwu wrote.
He called on lawmakers, religious leaders, and social media companies to act swiftly against such practices, while advocating for legislative reform to classify these acts as hate speech or exploitation under disability protection laws.
In a chat with The Journal, Dr Bamishe expatiated the 2025 IAAD theme, saying it reflects the stark reality that skin cancer is not just a health issue but a matter of life and death for her community.
“When the state fails to protect us from preventable death, it is violating our right to life,” she said. “We need the Nigerian government to add sunscreen to the national essential drug list and ensure it’s accessible. We urge the World Health Organization to do the same.”
The AAN is also advocating for disaggregated data on skin cancer prevalence among PWAs to better understand and address the scale of the crisis.
In a statement issued in Abuja, Nigeria’s First Lady, Senator Oluremi Tinubu, pledged support for the albinism community. She described the IAAD 2025 theme as “a powerful call to action” and emphasised the need for sustained advocacy, dignity, and equitable healthcare.
“Persons with albinism deserve not just equal rights, but also safety, access to quality healthcare, and above all, dignity,” she stated.
According to estimates published in peer-reviewed academic journals, over two million Nigerians live with albinism. However, access to healthcare remains alarmingly low. Less than five percent of persons with albinism are enrolled in structured health insurance schemes that cover dermatological services, including skin cancer treatment, as confirmed by advocacy efforts from the Albinism Association of Nigeria (AAN).
Despite skin cancer being the leading cause of death among PWAs, the National Health Insurance Scheme (NHIS) currently lacks a comprehensive framework for their protection. The AAN has repeatedly called for the inclusion of sunscreen, regular skin screening, and cancer care under NHIS coverage. According to a Punch Healthwise report, only one government hospital National Hospital, Abuja provides subsidised radiotherapy for skin cancer under NHIS, leaving most affected individuals without treatment due to cost and distance barriers.
As part of its commemorative coverage, The Journal asked members of the albinism community about their lived experiences. Several individuals recounted challenges ranging from lack of affordable healthcare and exclusion in schools to discrimination at work due to visual impairments and societal stigma.
When asked what kind of support would make a difference, a respondent from Nassarawa said: “We need the government to subsidise treatment and provide protective gear. But more importantly, we need respect people need to stop mocking us in public and online.”
Another student from Benue added: “Our biggest challenge is not our condition, but people’s attitude. We’re constantly treated as different as if we don’t belong. That must change.”
Without urgent intervention, over 60 percent of persons with albinism (PWAs) in Nigeria may develop preventable skin complications by 2030, experts warn. The World Health Organization (WHO) is currently reviewing an application to add SPF50+ sunscreen to its Model List of Essential Medicines, citing it as a lifesaving product for vulnerable populations, including PWAs in Sub-Saharan Africa. According to Human Rights Watch, lack of sunscreen access contributes significantly to premature deaths from skin cancer among PWAs, with many in Nigeria not surviving beyond the age of 40 due to prolonged ultraviolet exposure.
“Help us to help ourselves,” Dr Bamishe concluded. “Together, we can overcome these challenges.”
