Activists push for Pakistan to recognise and support people with albinism

Pakistan keeps no data on people with albinism, leaving needs unmet in schools, healthcare, and jobs.

Originally published on Global Voices

For Adeel Nasir, 24, who has albinism and lives in Kot Radha Kishan, a town in Kasur district, Punjab Province of Pakistan, school meant constant adjustment to challenges that many people around him did not understand.

Because of low vision, he struggled to read what was written on classroom whiteboards. Some teachers seated him closer to the board, improved the lighting, and gave him written notes. But one classroom incident remained painful.

Adeel once asked a teacher what qualifications a fighter pilot needs. He expected encouragement about his ambition. Instead, he received a response focused on his eyesight.

“First of all, you should be able to see clearly with your eyes,” Adeel recalled the teacher saying.

His classmates laughed. Years later, he says people still notice his condition before they recognise his abilities.

“My abilities, my degrees, and my skills were ignored because of my weak eyesight and physical appearance,” he said during an in-person interview with Global Voices.

Adeel’s experience reflects a concern that Malooka-Anne Miti-Drummond, the UN Independent Expert on the enjoyment of human rights by persons with albinism, raised during her June 2026 visit to Pakistan. She said policies, programmes, and data systems overlook people with albinism.

Albinism is a rare, non-contagious, genetically inherited condition caused by reduced or absent production of melanin, the pigment responsible for colour in the skin, hair, and eyes. Reduced melanin can result in visual impairment and increased vulnerability to ultraviolet (UV) radiation because melanin provides natural protection against sun damage. People with albinism are born with the condition; it is not contagious and does not affect their intellectual ability.

Pakistan has no separate national estimate of how many people with albinism live in the country. The UN notes that country-level data on albinism is scarce worldwide, and many countries collect no official statistics on it. Available estimates put prevalence at roughly one in 17,000 to 20,000 people in many European and North American populations, and higher in some African communities. The UN has called for better data collection to understand the challenges people with albinism face.

The absence of a national estimate does not mean that people with albinism are absent in Pakistan. Researchers have documented albinism among Pakistani families despite the missing estimate. A study of 94 previously unreported Pakistani families with non-syndromic oculocutaneous albinism found disease-causing variants mainly in the TYR and OCA2 genes, two of the major genetic causes of albinism worldwide. Genetic studies of affected families cannot establish how many people with albinism live in the country.

For Adeel, the lack of recognition shapes how institutions treat his needs. After a long effort, he obtained a disability certificate, but as he explained, “The disability certificate we received is also issued on the basis of our weak eyesight, not because of albinism itself.”

“There is no place in any office or government institution where a separate form or category under the name of ‘albino’ exists where we can register ourselves,” Adeel added.

When a community is missing from data

The difficulty of documenting albinism ties to a broader gap in disability data. Many national systems measure disability through functional difficulties and do not record each medical condition separately. Pakistan’s 2023 Population and Housing Census asked about difficulty seeing, hearing, walking, communicating, remembering, and caring for oneself rather than individual conditions.

A Pakistan Bureau of Statistics representative, who spoke to Global Voices on condition of anonymity, said the bureau keeps no separate official data on people with albinism. The person said collecting information on rare conditions requires well-designed questionnaires, and Pakistan would have to choose the best method before adding albinism to future data collection.

Asim Zafar, a disability rights advocate, emphasised that data is essential during an interview with Global Voices via WhatsApp:

“Data is very important for any country because planning is done on the basis of data, and budget allocation is done on the basis of planning.”

Miti-Drummond identified that missing data limits access to healthcare, education, and social protection: “When communities are not visible, their needs are not visible.”

Education, healthcare and everyday barriers

Sundus Arif, 39, was born and raised in Lahore, Pakistan. She has albinism and low vision, and she said in an online interview with Global Voices that her biggest challenge has often been getting others to understand her needs.

Her schools had no structured accommodations, so she had to explain her condition and advocate for adjustments herself. As a student, she needed simple measures: a seat in the shade during outdoor assemblies, larger-print material, and extra time to copy notes from the board. She said:

“There are neither clear guidelines nor effective arrangements in educational institutions of Pakistan to accommodate students with albinism.”

Adeel said small adjustments helped him stay in school, but he received no extra time in examinations despite his visual difficulties.

Miti-Drummond said bullying and a lack of support erode the confidence of children with albinism and hurt their education: “If a child is bullied, they are more likely to drop out of school.”

People with albinism also face specific healthcare needs for their skin and vision. Because melanin protects against UV radiation, they are more vulnerable to sun damage and need sun protection and regular medical care. Access to dermatological and eye care is a concern for people with albinism worldwide.

Sundus, also a parent of a child with albinism, said children need sunscreen and sunglasses to protect their skin and eyes from sunlight.

Miti-Drummond explained family income decides whether households can afford that protection:

“If you have to choose between sunscreen and buying food, and you are already struggling to buy food, this is something that becomes inaccessible.”

The World Health Organization (WHO) says early eye care, sun protection, and access to health information can reduce many of the complications linked to albinism. It recognises sunscreen as an important preventive measure because reduced melanin raises vulnerability to UV damage.

Qualified but excluded

Education does not remove social barriers for many people with albinism. Adeel said finding work was one of his biggest challenges after he finished his studies. He believes employers focused on his eyesight and appearance instead of his qualifications.

Miti-Drummond also pointed to employment discrimination worldwide: “You may be very well qualified, but actually getting employment, there was still stigma and discrimination.”

During the interview, Sundus said women with albinism face discrimination beyond disability-related barriers. Social expectations about appearance, marriage, and femininity add pressure. In her experience, people judged her appearance before they noticed her education, professional abilities, or personality. Women with albinism often have to challenge misconceptions about both their condition and their role in society.

Climate change adds another risk

Rising temperatures and frequent heatwaves in Pakistan add to the risk of sun exposure for people with albinism. Pakistan is among the countries most affected by climate change, and national climate assessments document rising temperatures, extreme heat events, and growing climate-related risks.

A study in the BMJ Global Health journal reported that climate change may increase vulnerability among people with albinism by intensifying exposure-related risks and creating barriers to preventive healthcare in low-resource settings.

For Adeel, heat and sunlight shape daily life. Sensitivity to sunlight makes it hard for him to move around outdoors, and he described problems with his skin and eyesight.

Lesson for Pakistan

Several countries have built specific frameworks for people with albinism. Miti-Drummond told Global Voices that efforts in Malawi, Cameroon, Tanzania, Mozambique, Uganda, Angola, and Panama improved awareness, healthcare access, education and protection from discrimination. For Pakistan, the first step is better information and inclusive planning.

Zafar said laws and policies fall short without implementation:

“Policies are available, laws have been made, but there is a lack of implementation.”

For Adeel, recognition means people with albinism should not have to fight individually for basic support.

Albinism is present across Pakistan, and existing systems do not recognise the needs of the people who live with it. Better data would make them visible. Inclusion also takes accessible healthcare, inclusive education, climate-sensitive planning and a voice for people with albinism in decisions that affect their lives. Miti-Drummond put the principle in four words: “Nothing for us without us.”

For Pakistan’s people with albinism, being counted is the first step, but being heard and included is the ultimate goal.