Safety Fears Rise for Persons with Albinism in Zambia

By Alain kabinda

For many Zambians living with Albinism, daily life is often shaped by more than the physical realities of a genetic condition.

It is increasingly defined by fear, uncertainty, and a persistent struggle for protection, inclusion, and dignity.

Fresh concerns raised by the Zambian Albinism Alliance have once again brought the issue into sharp national focus, highlighting what advocates describe as deep protection gaps, weak service delivery systems, and troubling allegations of unauthorised activities involving foreign nationals engaging vulnerable communities without recognised institutional oversight.

At the centre of the growing concern is a broader question: despite years of advocacy, policy development, and international commitments, are Zambia’s systems doing enough to protect persons with albinism?

Speaking during a media briefing in Lusaka, Zambia Albinism Alliance (ZAA) Vice President Blessings Mbalashe said many persons with albinism continue to face significant risks despite the existence of policy frameworks meant to safeguard their rights.

He said weak implementation, limited institutional coordination, and inadequate funding continue to leave many vulnerable to discrimination, exclusion, and health risks.

“Progress has been made at policy level, but implementation remains a challenge,” Dr. Mbalashe said.

His remarks reflect concerns long raised by disability rights advocates who argue that while Zambia has demonstrated political recognition of albinism-related issues, practical support often fails to reach those most in need.

Albinism is a genetic condition characterised by reduced or absent melanin, affecting skin, hair, and eye pigmentation.

For those living with it, the condition often brings severe sensitivity to sunlight, visual impairment, and increased risk of skin cancer.

But beyond the medical challenges lies a social reality that many describe as equally difficult.

Across parts of Zambia and the region, myths and harmful stereotypes surrounding albinism persist. For some families, this has translated into stigma, exclusion, and fear.

In rural communities especially, awareness remains uneven, leaving some people with albinism isolated from healthcare, education, and social opportunities.

Dr. Mbalashe pointed to the National Action Plan for the Protection of Persons with Albinism (2026–2030) as a critical tool requiring stronger implementation.

He added that while the framework provides direction, meaningful impact will depend on active collaboration between government institutions, disability organisations, and community stakeholders.

He also acknowledged Zambia’s formal recognition of International Albinism Awareness Day, commemorated every June 13 following sustained advocacy by ZAA and partner organisations.

The observance has helped raise awareness nationally, but advocates say awareness alone is not enough.

Without dedicated funding, outreach systems, and coordinated service delivery, they warn that many commitments risk remaining symbolic.

One of ZAA’s strongest recommendations is the creation of a dedicated government budget line for albinism programmes.

Advocates argue that this would improve access to sunscreen, specialised medical care, vision support services, and community-based outreach. Currently, much of this work is sustained through partnerships and intermittent donor support.

For many families in rural areas, access to sunscreen—essential for preventing skin cancer—is inconsistent or unaffordable.

Medical screenings and dermatological care are often concentrated in urban centres, placing them beyond reach for vulnerable households.

Adding urgency to the situation are allegations raised separately by ZAA Secretary General Dr. Prince Chibwe concerning unauthorised activities reportedly involving two foreign nationals operating within communities across Zambia.

In an urgent report submitted to the Ministry of Community Development and Social Services, the alliance said it had received reports that the individuals were engaging persons with albinism and their families without consultation or coordination with recognised disability structures.

According to the report, the activities allegedly involved interviews focused on living conditions and government support programmes, as well as the collection of photographs, videos, and audio recordings.

D.  Chibwe also said these allegations raise serious safeguarding concerns. Particularly troubling are claims that some families were allegedly encouraged to expose children during documentation processes under claims that evidence was needed to demonstrate poor living conditions. If verified, advocates say such actions would raise significant concerns around dignity, privacy, informed consent, and child protection.

The alliance has called on government to investigate the identity, legal status, and operational mandate of those involved. It has also requested temporary suspension of related activities pending verification.

Beyond investigation, ZAA is calling for immediate safeguarding measures for affected families, including psychosocial support where necessary.

And that socio-economic vulnerability can make some households susceptible to manipulation, particularly when approached by individuals presenting themselves as humanitarian actors.

ZAA says stronger public education is needed to help communities identify legitimate organisations working in disability advocacy. This includes encouraging the reporting of suspicious or unregulated actors.

The Alliance has further reaffirmed its willingness to cooperate with government and law enforcement agencies in any investigation. It is about building systems where persons with albinism are not treated as afterthoughts, but as citizens fully entitled to healthcare, dignity, and participation.

Dr. Mbalashe added that the meaningful progress will require coordinated investment from government, private sector institutions, NGOs, faith-based organisations, and communities.