Humanity grapples with myriad global disasters, but none as insidious and pervasive as climate change. It is the omnipresent spectre, casting a long shadow over the marginalised, the impoverished and the differently abled. Among these, persons with albinism (PWAs) stand perilously on the edge, their lives a precarious balance against the raging elements.
The world is heating up. The relentless accumulation of greenhouse gases, a byproduct of humanity’s insatiable industrial appetite, has ushered in an era of unprecedented global warming. Temperatures soar, weather patterns grow erratic and nature’s fury manifests in extreme weather events.
Across the continent, from Ghana to Madagascar, ongoing deforestation, rising temperatures, and environmental degradation have significantly reduced natural shade, increasing the exposure of persons with albinism to dangerous levels of ultraviolet radiation. According to the United Nations, many persons with albinism are engaged in outdoor labour, largely because they drop out of school early due to bullying and a lack of inclusive support measures. As a result, their heavy reliance on subsistence work under direct sunlight places them at heightened risk, with serious consequences for both their health and socio-economic stability.
Poverty and prejudice heighten genetic risk
Albinism, a rare genetic condition that occurs across all ethnicities and genders typically leads to a reduced or complete absence of melanin in the skin, hair, and eyes, a form known as oculocutaneous albinism, resulting in heightened sensitivity to sun exposure. It robs individuals of melanin, leaving their skin, hair and eyes devoid of natural protection against ultraviolet radiation (UVR). The science behind albinism unveils a tale of genetic betrayal, where the absence of melanin spells doom. Oculocutaneous Albinism Type 2 (OCA2), the most common form in Africa, places PWAs at heightened risk in a region characterised by intense solar radiation and inadequate access to protective healthcare services. In fact, the correlation between UVR and skin cancer is well-established, posing a serious and often fatal threat to PWAs. The UN Independent Expert on albinism notes that PWAs are up to 1000 times more likely to develop skin cancer compared to those without the condition, with many succumbing to the disease by age 30.
Research has shown that inadequate health support significantly contributes to the high mortality rates from skin cancer among PWAs, to which Malawi stands dire testament. Here, skin cancer accounts for 90 per cent of deaths among PWAs, with climate change acting as a ruthless accelerant. Rob Kingsley Banda, an assistant dermatologist, highlights the grim connection between extreme heatwaves and rising cancer rates, a stark reminder of climate change’s deadly reach.
The World Health Organisation (WHO) has yet to classify high-SPF sunscreen as an essential medicine, further complicating the situation. Despite advocacy efforts, high-SPF sunscreen remains off national essential medicines’ lists, a bureaucratic oversight with fatal consequences. In 2024, advocates lobbied on Selection and Use of Essential Medicines to include SPF 50 sunscreen with UVA and UVB protection on the essential medicines list to save PWAs’ health and lives. Although the Committee acknowledged the public health relevance of sunscreen in preventing skin cancer among high-risk groups like PWAs, they ultimately rejected the application, citing the need to define standards for therapeutic sunscreens. PWAs, particularly children, do not have the luxury of time. The UN Independent Expert on albinism emphasised that sunscreen is not a luxury but a lifesaving necessity.
PWAs face a range of human rights challenges that are further intensified by the impacts of climate change. These challenges intersect with discrimination based on colour and disability and undermine fundamental rights, including the right to health, education, employment, and life. A particularly urgent concern is the persistence of harmful practices and beliefs linked to albinism, especially those rooted in witchcraft and superstitions. In several African countries, myths attributing magical properties to the body parts of persons with albinism have led to brutal acts of violence, including mutilation and murder. Climate change exacerbates these risks by deepening poverty and marginalisation, which are key drivers of such harmful practices, leaving them increasingly vulnerable, with Zimbabwe and Tanzania as a case in point.
International framework for legal protection
Under international human rights laws, PWAs are entitled to the full range of human rights, including the rights to life, equality, non-discrimination, health, education, employment, and social protection. These are guaranteed under core treaties such as the ICCPR, ICESCR, CRC, CEDAW, CERD, and CRPD. The CRPD specifically recognises albinism as a disability, affirming rights to accessibility, inclusion, and reasonable accommodation. It also obligates States to ensure protection during climate-related disasters and involve affected persons in decision-making. Additional provisions support data collection, international cooperation, and national implementation for inclusive climate and social policies. However, their reality is starkly different as they are left to navigate a world that often fails to acknowledge their unique challenges. Their disability is often unrecognised, hindering access to disability services and social security initiatives. Consequently, PWAs are further marginalised and poorly resourced, highlighting the unequal impact of climate change. Within the international and regional human rights frameworks, PWAs must be seen as subjects of rights, entitled to non-discrimination and inclusion in all aspects of society.
Sustainable Development Goal (SDG) 13 focuses on combating climate change and its impacts. The ongoing climate and environmental changes pose significant challenges for people with disabilities and those with albinism. PWAs have received little attention from service providers and policymakers regarding the impact of climate change. Their needs are often overlooked in climate adaptation and mitigation efforts. Sub-groups, including those who are poor, women, Black, Indigenous, People of Color, and PWAs, are disproportionately affected by climate change. Thus, there is an urgent need to address the impacts of climate change on people with disabilities from an intersectional perspective.
Education, resources and action needed
The clarion call for action has never been more urgent. As the world wakes up to the devastating impacts of climate change, the plight of PWAs in Africa demands a spotlight. Policymakers must be informed, equipped and ready to implement inclusive mitigation and adaptation measures that recognise the unique vulnerabilities of PWAs. It is a fight against time, a struggle for recognition and a plea for humanity to extend its protective embrace to those most vulnerable.
Although recent attention has highlighted the impact of climate change on PWAs in Africa, particularly through the landmark judgment in the case of Centre for Human Rights and Others v. United Republic of Tanzania (Application No. 019/2018), holding Tanzania accountable for human rights violations against persons with albinism (PWAs), more comprehensive action is needed to address their high mortality rates, access to inclusive health care system.
Comprehensive data collection is essential to ensure the meaningful inclusion of PWAs in climate action efforts. However, existing data on the impact of climate change on persons with disabilities remains limited, and current census and survey tools often fail to specifically identify PWAs. This lack of disaggregated data hinders the development of targeted and effective responses. States are encouraged to enhance data collection methods by incorporating additional questions that capture the specific experiences of PWAs, including their exposure and vulnerability to climate-related risks. A notable example is Kenya’s 2019 census, which included a dedicated question on albinism following the standard disability module.
PWAs are routinely left out of climate action planning and decision-making processes at both national and local levels, mirroring broader patterns of exclusion faced by persons with disabilities. While many are directly experiencing the consequences of environmental changes, their understanding of climate change and potential roles in adaptation and mitigation efforts remains limited due to inadequate access to information. To ensure inclusive and effective climate responses, policymakers must be fully informed of the unique vulnerabilities faced by PWAs and actively involve them in climate-related initiatives. Moreover, leaders in the albinism community need access to forums where climate change is debated, and they should collaborate with disability rights movements and other at-risk groups to highlight their challenges. Integrating their issues into the broader climate change discourse will ensure that PWAs, especially those in rural areas, receive the visibility and support they deserve.
Strengthening access to specialised medical services such as regular skin examinations and cancer treatment is equally important, alongside training healthcare workers to address the unique needs of PWAs. For instance, in Kenya, the National Council for Persons with Disabilities has established a support programme that provides persons with albinism with free high-SPF sunscreen, protective clothing such as long-sleeved shirts, and wide-brimmed hats through public healthcare facilities. This initiative has been decentralised to county-level hospitals to improve accessibility for individuals residing in different regions. Governments in other contexts are encouraged to adopt similar measures, ensuring the availability of affordable or free sun protection products and climate-adaptive resources.
Raising community awareness about the genetic basis of albinism and the critical need for ultraviolet protection is essential to combating stigma and improving health outcomes. Disaster preparedness plans should also be inclusive, ensuring that PWAs have access to safe shelters and tailored support during extreme climate events. The work of the Africa Albinism Network in promoting inclusion and advancing the rights of persons with albinism in the context of climate action is particularly commendable.
Finally, strengthening legal and policy frameworks to protect PWAs from violence, discrimination, and harmful practices is essential. Legal protection must extend to the rights to health, education, life, employment, and equality before the law. Climate policies must be inclusive, grounded in human rights principles, and responsive to their unique vulnerabilities because it is not only a legal obligation, it is a matter of life and death.
This week we are delighted to publish the third posts by Lakshita Kanhiya, the blog’s regional correspondent for Africa. Her previous posts can be read here and here.
The GCHRP Editorial Team
