As climate change worsens, people with albinism, particularly women, face heightened health risks from increased UV radiation, compounded by deep-rooted stigma and discrimination that impacts their access to proper healthcare and education.
In Africa, over 90 percent of individuals with albinism—a genetic condition characterized by a lack of melanin, the natural pigment that gives color to our skin, hair and eyes—die before they reach the age of 40. The lack of melanin causes individuals with albinism to struggle with vision and increased vulnerability in the face of sun exposure. The condition also makes them particularly susceptible to ultraviolet radiation and fatal skin cancer that follows from too much exposure.
Albinism can impact individuals of any race, ethnicity and gender, but throughout Africa, people with the condition have faced significant discrimination and violence. From being refused treatment for skin cancer to being targeted for cruelty, people with albinism face recurrent dangers and are in dire need of protection.
The O’Neill Institute for National and Global Health Law at Georgetown University released “The Forgotten Ones: The Impact of Climate Change on the Health and Well-being of Persons with Albinism” last month, a report produced in partnership with civil society organizations in Zimbabwe. The authors interviewed 73 people in Zimbabwe, including adults with albinism and the caregivers and guardians of children with albinism.
Ms. spoke with Sarah Bosha, the report’s first author, who serves as the director of legal research and human rights for the Center of Global Health Politics and Policy at the O’Neill Institute. Bosha talked about the discrimination and stigma faced by persons with albinism, the challenges posed by climate change, and the historic legal and policy victories seen in the past few years to increase protections for those with albinism.
This interview has been edited for clarity and length.
Morgan Carmen: I would love to start with the big picture. The report talks about the stigma and discrimination faced by individuals with albinism, specifically in Zimbabwe, and how climate change exacerbates the human rights violations they experience. Can you talk about that discrimination and that stigma in health and education?
Sarah Bosha: Because albinism is a condition that results in a lack of melanin in the skin, hair and the eyes, persons with albinism are particularly stark in their presentation in populations that are of darker complexions. What that has meant for countries like Zimbabwe, and even other African countries, is these harmful myths that have really withstood the test of time and contributed significantly to the ostracization of people with albinism within society.
Bosha: What that also means is, because they are othered, and they’re so different in their appearance, not enough accommodations are made for them. For example, within classrooms, due to their problems with vision, they need to sit closer to the blackboard or certain color chalk needs to be used so that they’re able to see the words on the blackboard. Or they need books with large font so that they can follow along. Or they need visual aids … so that they’re able to see and keep up with their classwork. But because of this ‘othering,’ this belief that they are less than human, or that they don’t die, they simply disappear, there have not been enough accommodations within the education sector.
Within the health sector, this discrimination or othering of persons with albinism, seeing them as less than human, has led to discriminatory treatment by healthcare workers. A lot of the persons with albinism we spoke with talked about presenting at healthcare centers and being turned away by nurses who told them, “We don’t know how to treat your kind.” For women who gave birth to children with albinism, they were not receiving enough information from nurses about the condition, which is genetic, or about how to care for the skin of their children, and sometimes even being ridiculed by nurses, or having their infant ridiculed by nurses because of the stark appearance of the skin.
Because of this ‘othering,’ this belief that they are less than human, or that they don’t die, they simply disappear, there have not been enough accommodations within the education sector.
Sarah Bosha
Carmen: The report talks extensively about how women with albinism are particularly vulnerable to these human rights violations. Can you talk a little bit about how that manifests?
Bosha: When women with albinism are in healthcare settings, they are usually treated in a discriminatory manner. There are myths that circulate: that if you get close to a person with albinism, or if you are too friendly with a person with albinism, you yourself might give birth to a child with albinism. I think some of those myths have ended up seeping into the healthcare system, where there’s a perception that [if] you don’t want to be affected by the condition of albinism, you exercise caution.
For the women that give birth to children with albinism, we’ve heard many heartbreaking stories of not only the nurses themselves gathering around and staring at the baby, but also situations where, even when family members came to visit and to see the child for the first time, because there was no proper explanation of the condition of albinism—albinism can occur when two people without albinism carry that gene, and there’s a 25 percent chance that a child with albinism can be born to two parents with the gene, but who themselves do not have albinism.
Without that explanation, women are often blamed for giving birth to children with albinism. They’re accused of witchcraft or they’re accused of prostitution—[as if albinism] is a sign of their wrongdoing—and often, many of them are abandoned and become single mothers.
In a country where there is increasing rising temperatures and some of the harshest manifestations of climate change, it’s increasingly important for healthcare workers to be trained not to discriminate so that healthcare services are inclusive.
Sarah Bosha
Carmen: And how does climate change magnify these violations of the right to health, education and work?
Bosha: The increased UV radiation [affects] the skin of persons with albinism, leading to excessive sun damage, which also compounds over time, leading to a higher incidence of skin cancer. Reports place morbidity and mortality rates from skin cancer for persons with albinism in Africa at about 98 percent, and many persons with albinism unfortunately do not live beyond the age of 40 due to skin cancer.
When we were talking to individuals with albinism, many of them mentioned that when they had pre-cancerous wounds and they presented at hospitals, they were given antiseptic ointment, or they were given painkillers, or in worst-case scenarios, they were simply put in a bed and abandoned and never saw a doctor. … These sorts of situations make it more difficult for them to withstand the impacts of climate change, like increased UV radiation, like longer summers.
In a country where there is increasing rising temperatures and some of the harshest manifestations of climate change, it’s increasingly important for healthcare workers to be trained not to discriminate so that healthcare services are inclusive—to be trained to understand how to respond to a patient who presents with skin damage from the sun, or who presents with pre-cancerous wounds, because what then happens is these attitudes, this discrimination, this being turned away, has led to many of the persons with albinism not seeking treatment on time and eventually developing advanced skin cancer and dying.
Carmen: On Feb. 5, 2025, the African Court of Human and People’s Rights ruled that the government of Tanzania violated the right to education and health of people with albinism. Since you worked on the case in an amici role, can you speak a little about the case and the impact of the decision?
Bosha: The initial brief that was filed was focused on mutilations and killings [of persons with albinism] that were happening in Tanzania, and there was a mention also, of course, of violations of the right to health. And myself and the co-amici … felt it critical and important to highlight the issue of skin cancer and other challenges that persons with albinism face, particularly in the African context, because of climate change and its harsh impacts.
The decision was historic, the first of its kind, in that it was a ruling within the African context on the situation of persons with albinism.
Also, even more exciting about this ruling was the declaration by the court that sunscreen lotion is not a luxury, but that it is really the difference between life and death for persons with albinism.
Another thing that we found critical from this particular ruling was the finding by the court that access to mental health services, because of the high rate of stigma and discrimination that persons with albinism face, is something that should be considered as part of primary health care. To hear a court anywhere in the world really talk about mental health as part of primary health care is innovative and groundbreaking in itself, and we are hoping that activists for persons with albinism and activists for individuals at high risk of skin cancer can rely on this particular decision to push policy change.
Carmen: Where does this particular fight fit within the larger disability justice movement in Zimbabwe, Tanzania and other countries?
Bosha: I think this larger fight is really a global fight and continental fight against the dominance of ableism.
If you really think about it, all of society’s structures and systems have never been designed with persons with disabilities in mind. I think this kind of work, this advocacy, these court cases, remind governments that they do need to make accommodations, that inclusiveness is a part of their responsibility, but more broadly, that human rights are truly human rights for all and must be tailored so all can enjoy them at the same level.
There’s no point in having healthcare systems and education systems that only cater to persons without disabilities and exclude everybody else to their detriment. It’s time for individuals to recognize that there are so many limitations placed on persons with disabilities, which limits their reaching their full potential, and that must change and must shift as a matter of urgency.
Carmen: As you’ve written in Ms., 2025 marks a decade since the United Nations established an independent expert on the rights of persons with albinism. What makes you hopeful about the next decade based on what we’ve seen in the past 10 years?
Bosha: For me, just the emergence of a really strong movement of persons with albinism, led by organizations such as the Africa Albinism Network that are making inroads. Their advocacy has led to the creation of tools that governments can easily use, policy tools they’ve created.
They were part of supporting the Africa Union National Action Plan that governments can implement to address albinism within their own communities.
They were instrumental in working together with Amnesty International to get the leaders of the Southern African Development Community, a grouping of about 11 African countries, to make a declaration on the protection of persons with albinism that not only included the role of government in preventing attacks, but also spoke about health issues and education issues. So, I think there’s much more visibility and recognition. And I really do think that the creation of this mandate was necessary and needed to bring visibility to a community that I believe is among the most vulnerable of the vulnerable. …
It’s encouraging to see that even before the report came out, the government of Zimbabwe has recognized sunscreen lotion as an assistive device, which I think is critical and is a policy push that we certainly celebrate.
I think the longer journey, really, is talking about stigma and discrimination and encouraging governments to put in place comprehensive campaigns that really address stigma and discrimination against persons with albinism. …
I also think it’s important to provide information to persons with albinism and train healthcare workers. This really needs a massive system shift, and my hope is that in the next phase of the work that we do, we might have the opportunity to work with officials and activists to discuss how the curriculum and training for healthcare workers, primary healthcare workers might change so that they recognize albinism [and] the impact of discrimination on the quality of care.
Carmen: Before we end, is there anything else that you think people should know about this report, the case, and the push for the rights of people with albinism?
Bosha: As people read the report, they must read it as a product of the very voices of persons with albinism. Two of the authors on that report are actually themselves people with albinism, strong activists in the space.
When people are thinking of inclusion and who should be at the table, we must not forget persons with disabilities, and we must recognize the diversity within the group of persons with disabilities—that each and every one of the people, whether they have albinism, whether they have issues with mobility, all of those different types of disabilities must be catered to and represented if we are to have a comprehensive, inclusive and effective climate change approach.
Bosha noted that there is a global campaign to add sunscreen to the World Health Organization’s Essential Medicines List. If you would like to add your name to the petition, circulated by the Africa Albinism Network, you may do so here.
