{"id":8260,"date":"2025-06-12T16:16:45","date_gmt":"2025-06-12T16:16:45","guid":{"rendered":"https:\/\/beyondsuncare.org\/dia-albinismo-entrevista-onu-derechos\/"},"modified":"2025-07-28T08:20:42","modified_gmt":"2025-07-28T08:20:42","slug":"albinism-rights-interview-un","status":"publish","type":"post","link":"https:\/\/beyondsuncare.org\/en\/albinism-rights-interview-un\/","title":{"rendered":"“Recognize, Protect, Transform” : The Fight for the Rights of People with Albinism"},"content":{"rendered":"

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At the heart of the global fight for the human rights of people with albinism stands a firm, empathetic, and committed voice: that of Muluka-Anne Miti-Drummond<\/b><\/span>, UN Special Rapporteur on the enjoyment of human rights by persons with albinism<\/a>. A human rights lawyer, activist, and key figure in the UN Special Procedures, Muluka has dedicated her professional life to combating discrimination and bringing visibility to a historically overlooked population.<\/p>\n

From her position, she outlines the urgent challenges and solutions needed to ensure a dignified, healthy, and safe life for millions of people born with albinism\u2014especially in regions where myths and stigma still kill.<\/p>\n

On the occasion of June 13<\/b><\/span><\/a>, International Albinism Awareness Day, we share this interview offering a frank, informed, and deeply human perspective on the challenges and progress in protecting people with albinism around the world.<\/p>\n

What inspired you to start working in this field, and what has sustained your commitment over time?<\/b><\/h3>\n

I have always firmly believed that all people deserve to be treated with dignity and respect. The cases of violence, stigmatization, and discrimination against people with albinism contradict this principle and show how ignorance, myth, and superstition can lead to egregious human rights violations. Being part of the albinism movement, witnessing the resilience, strength, and courage of so many individuals\u2014alongside the tangible impact of sustained advocacy and the potential for positive change\u2014has strengthened my commitment over time.<\/p>\n

What is your view on the proposal to include sunscreen in the WHO List of Essential Medicines? What impact would this have on skin cancer prevention for people with albinism?<\/b><\/h3>\n
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Sunscreen is not a cosmetic product for people with albinism: it is a medical necessity that saves lives<\/b><\/span>.<\/p>\n<\/blockquote>\n

Its inclusion in the WHO Essential Medicines List is long overdue, especially given the growing awareness of UV radiation risks and climate change. In many low- and middle-income countries, the cost of sunscreen can represent a third or even half of a person\u2019s basic income. This economic burden is particularly harsh for those facing systemic barriers to education and employment. Recognizing sunscreen as an essential medicine would not only acknowledge its clinical importance, but also enable free public distribution, especially in rural areas. While the impact won\u2019t be immediate, it\u2019s a key step toward reducing skin cancer among people with albinism and saving lives.<\/p>\n

What progress has been made in collecting and disaggregating data on skin cancer in people with albinism? Is this information being used to shape public policies?<\/b><\/h3>\n

Unfortunately, much more data is still needed on the incidence of skin cancer in people with albinism. Research and data collected by civil society organizations confirm what has long been known: this population is disproportionately affected by this preventable disease. However, governments still do not prioritize the disaggregation of health data to reflect their experiences. Health centers are well positioned to collect and report this vital information. Without such data, effective interventions cannot be designed. The lack of action in this area implies an acceptance of poorer health outcomes for people with albinism\u2014and that must change.<\/p>\n

According to the report \u201cThe Forgotten Ones,\u201d people with albinism face specific challenges in climate disaster contexts and are excluded from sustainability policies. What are the most urgent challenges, and what measures should be taken?<\/b><\/h3>\n

Climate change directly increases the risk of skin cancer in people with albinism, yet they are excluded from climate-related policies and discussions. In disaster contexts, their specific needs are rarely considered. They may struggle to access early warning systems, and temporary shelters are often inadequate or unsafe. Additionally, dangerous beliefs persist that make them targets of ritual violence.<\/p>\n

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It is urgent that <\/span>climate resilience policies incorporate specific measures<\/b> for this population.<\/span><\/p>\n<\/blockquote>\n

In recent years, several African countries have adopted national action plans to protect people with albinism. From your experience, are these plans producing concrete improvements, or is there still a gap between policy design and implementation?<\/b><\/h3>\n

These plans have brought positive results: increased budget allocations, recognition of people with albinism as persons with disabilities, access to benefits, reasonable accommodations in schools, awareness campaigns, and improvements in judicial responses. But challenges remain. Access to sunscreen and medical care is still limited in rural areas, funding is decreasing, and some professionals continue to believe in harmful myths.<\/p>\n

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Changing mindsets requires long-term strategies. The real impact of awareness will be seen in the years to come.<\/p>\n<\/blockquote>\n

In the current context of reduced international funding, how might initiatives for the rights of people with albinism be affected?<\/b><\/h3>\n

Organizations supporting people with albinism are facing a decline in funding. This affects key programs such as the free distribution of sunscreen, access to cancer treatment, and awareness campaigns. However, this moment may be an opportunity to innovate: seek new funding sources, link the cause to global issues such as climate justice, public health, or sustainable development. With creativity and strategy, the movement can continue to move forward, even in a challenging landscape.<\/p>\n

In a world that so often chooses to look the other way, <\/span>Muluka\u2019s voice reminds us that people with albinism do not need pity\u2014they need justice, health, safety, and respect.<\/b><\/p>\n

The resilience of the albinism rights movement is stronger than ever. Together, we can build a world where everyone can live without fear, with dignity, and full inclusion.<\/p><\/blockquote>\n

This June 13, International Albinism Awareness Day, <\/b>don\u2019t stay on the sidelines. Be part of the change.<\/p>\n

Donate and make a difference<\/b><\/p>\n

Each donation helps:<\/p>\n