Global impact of climate change on persons with albinism: A human rights issue

Introduction

Multiple planetary challenges face humanity, including the COVID-19 pandemic, climate change, and biodiversity loss, which intimately affect the health of people and the planet [1]. Climate change is considered the greatest health threat of the 21st century [1,2,3,4]. People living with disability, poverty, and unemployment are further structurally and disproportionately impacted by the projected devastating effects of climate change [5]. Such vulnerable populations include Persons with Albinism (PWA) whose health and well-being are impacted by the rising temperatures and increasing concentrations of greenhouse gases in the atmosphere [6]. The focus of our paper is to describe the urgency for addressing the health challenges for PWA impacted by the climate change crisis as a global human rights issue. We speak based on our 5-year transdisciplinary research-advocacy-policy partnership addressing albinism and human rights (see www.motheringandalbinism.com).

Albinism

Albinism is a rare, genetic, non-contagious group of conditions resulting in the reduction or lack of melanin pigmentation [7]. The condition affects people worldwide, regardless of gender or ethnicity [8]. While many types exist, people with Oculocutaneous Albinism Type 2 (OCA2), the most prevalent in the Africa regions, have limited or no melanin in their hair skin and eyes, causing them to have a lighter skin complexion and hair [9]. The prevalence of albinism considerably varies around the world. The United States has one of the lowest prevalence rates with one in 18,000 to 20,000 individuals [9]. However, the condition is most common in sub-Saharan Africa: Namibia has a prevalence rate of 1:1,755 while Botswana is about 1:1,307 and South Africa is 1:3,900 of the population [8]. The incidence among the Cuna Indigenous People in Panama and Colombia is 1 in 70 to 1 in 125 people [8]. About one in 20 persons generally carry the albinism gene [8]. With the incidence of PWA higher in certain geographical places in the world, like sub-Saharan Africa, the impact of climate change for PWA will make them increasingly at risk for skin cancer.

Health implications for persons with albinism

For PWA, the lack of melanin results in various degrees of visual impairment due to the combined effect of nystagmus, iris hypopigmentation and translucency, reduced visual acuity, and photophobia [10]. Consequently, PWA often require eyeglasses, typically with tinted or dark lenses, as well as access to various adaptive devices such as monocular and magnifiers to improve their vision, reduce visual activity, and light sensitivity. In addition, the skin is vulnerable to damage due to Ultraviolet (UV) radiation from the sun and so they do not tan and can easily be sunburned. They may develop blisters, solar elastosis, actinic keratosis, and are at a constant risk of developing skin cancer due to UV sun exposure [11]. It is recommended that PWA use sunscreen of at least a Sun Protection Factor (SPF) of 50 and wear long-sleeved clothes and hats [10]. PWA are reported to have a lower life expectancy due to skin cancer (with many of PWA reportedly dying before 40 years), lack of proper medical attention, and limited income opportunities including needing to work long hours outdoors while exposed to the sun [12,13,14].

Climate change, human rights and disabilities

Under international human rights laws, PWA have the same human rights as every other individual, including the right to life, liberty, and security under the United Nations’ Universal Declaration of Human Rights (UDHR) [15]. Article 25(1) of the Declaration grounds access to health care, stating that “everyone has the right to a standard of living adequate for the health and well-being for [themselves] and [their] families, including food, clothing, housing and medical care and necessary social services” (p.7).

Due to their visual impairment and sun sensitivity and the lack of accommodation and support for these conditions, in addition to the social and cultural (attitudinal) barriers, PWA are often persons with a disability [12], and thus are protected under the Convention on the Rights of Persons with Disabilities (CRPD) and the Protocol to the African Charter on Human and Peoples’ Rights on the Rights of Persons with Disabilities. Their disability, however, is not often recognized [16] which hinders PWA, including their families, from accessing disability services, government aides and relevant social security initiatives. Consequently, PWA, like many constituencies of persons with disabilities, are further marginalized and poorly resourced, which highlights the differential consequences of climate change [17]. With the human rights model enshrined in the UDHR and the CRPD among other regional instruments, PWA must be seen as subjects of rights and are therefore entitled to non-discrimination and inclusion in all aspects of society [12,18].

Climate change has been shown to have both a direct and indirect impact on a wide range of human rights, including the rights of persons with disabilities, which would include PWA [19]. In emergency situations, for example, persons with disabilities are often amongst the most unfavorably affected in relation to accessing emergency support, as well as, sustaining disproportionately higher rates of mortality and morbidity. The ongoing climate and environmental changes will present major challenges for people with disabilities in the context of the Sustainable Development Goal (SDGs), specifically SDG 13 which is to combat climate change and its impact [2]. People with disabilities, however, have gained little attention from service providers and policy makers to the impact of climate change. Their needs have been overlooked in the climate adaptation and mitigation efforts [17,18]. Moreover, sub-groups of people with disabilities are disproportionately affected by climate change, especially those who are poor, women, or Black, Indigenous, People of Colour [2,5] and PWA. Therefore, there is an urgent need to address the impacts of climate change for people with disabilities from an intersectionality lens.

The Human Rights Council (July 14, 2021) has adopted a resolution on human rights and climate change encouraging ongoing discussions among States and relevant stakeholders on the possibility of developing a new Special Procedure that will explicitly address the impact of climate change on the full and effective enjoyment of human rights [20]. They also stated that starting in 2023 there should be more discussion about different specific themes on the adverse impacts of climate change on human rights. This must include collaboration with healthcare providers, government, and civil society to bring to focus those who are most vulnerable, including PWA, for equitable treatment and access to services [18].

Impact of climate change on persons with albinism – a global concern

The current United Nations Independent Expert on the enjoyment of human rights by persons with albinism, Muluka Anne Miti-Drummond, has emphasized the issue of climate change and environmental changes as one of her priorities for the mandate [21]. Recently, several media stories reported the many challenges PWA face, specifically skin damage, relating to climate change [22,23]. For example, with the ongoing exposure to higher temperatures a PWA stated that working outside in an informal trading job in Africa resulted in him developing skin cancer, which prevented him from continuing to work in this field [24].

Over several years, greenhouse gases that occur naturally in the atmosphere alongside the generation of greenhouse gas emissions by humans has led to increased warming of the planet. This human-induced climate change has led to greater temperature fluctuations and unpredictable and extreme weather events globally that ultimately impact the health and well-being of the world's population [1]. For example, more recently in the United Kingdom, an extreme heat warning wasissued because of a high temperature surge, unheard of in the past [25]. With the average temperature of the world estimated to increase by as much as 2 °C annually, even PWA living in the Northern Hemisphere will be increasingly affected. PWA living in the Southern Hemisphere will also experience even higher temperatures, which will make them even more affected by these temperature extremes. Furthermore, the planet is facing negative consequences from human-made deforestations and degradations [26]. Many trees and other plant species, sustaining lives and livelihoods, are threatened to be extinct which decreases not only the resources for food and oxygen, but also shade from the sun, which is vital for PWA when outdoors.

Issues of access to sunscreen and protective eyewear and clothing

In addition to extreme geographical fluctuations in the global temperatures, PWA in many areas of the world lack access to health information about their condition, sunscreen, sunglasses, and sun protective clothing [14]. In a scoping review about albinism, Reimer-Kirkham et al. [27] found that PWA are at a higher risk of being subjected to human rights violations, health, and social inequities in accessing services to treat their health concerns. Many healthcare providers have insufficient knowledge about albinism or hold misconceptions that results in discriminatory practices [12]. For example, some believe that having a child with albinism brings bad luck or a curse to the family or community [14]. In addition, some healthcare providers also expressed shock or fear when a mother gives birth to a baby with albinism [28]. Although PWA can gain access to free sunscreen from public hospitals and clinics in countries like South Africa, consistency of availability remains a concern, especially in rural areas [29]. The limited availability of ophthalmologists and dermatologists also impacts their ability to obtain treatment and education on vision and skin care. In some of these outlying areas, the necessary health services are provided by Civil Society Organizations – which, while helpful is not a long-term sustainable strategy particularly as the climate change crisis continues. As the planet's temperature rises, it is increasingly important that PWA have access to health services to prevent skin damage and protect them from the stigma of skin disfigurement and ultimately, skin cancer.

Conclusion

During the past five years, we have worked closely with an international partnership (Tanzania, South Africa, Ghana, Nigeria, Kenya, United Kingdom, and Canada) to prioritize the research agenda on albinism, spiritual, and cultural beliefs and practices, and human rights. This partnership is transdisciplinary (nursing, medicine, psychology, philosophy, sociology, political studies, religious studies, history, and legal studies) and intersectoral (academics, medical personnel, civil society actors, and government representatives) which enriched our mutual ability to prioritize concerns for the health and wellbeing of PWA. This work permits us to explore contextual solutions for addressing the complexity of climate change. The higher incidence of albinism in the African context amplifies the vulnerability of PWA to the effects of climate change and highlights the need for further studies. With our current research-advocacy-policy partnership, we recommend the inclusion and engagement of PWA in the development of strategies to mitigate the health impact of climate change. Framing climate change as a human rights issue for PWA as a constituency of persons with disabilities, and through transdisciplinary partnership could raise awareness and prompt action so PWA are not put at increased risk of being left further behind as the attention paid to the impact of climate change increases [2].

Author agreement

All authors have made substantial contributions to all of the following: (1) the conception and design of the study, or acquisition of data, or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, (3) final approval of the version to be submitted.

The manuscript is based on a program of research on albinism, co-led by Reimer-Kirkham, Astle, and Ero, with Project Coordinator Buyco.

Declaration of Competing Interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.