In the heart of southern western Uganda’s Kasese District, a 12-year-old who we shall call Chrisha (not real name) greets me with a warm smile. Despite challenges she faces like hot temperatures, inaccessibility of sunscreens, her pink-reddish lips curve upwards as she welcomes me into their home.

Chrisha is with Albinism, which is a rare genetic, non-contagious group of conditions resulting in the reduction or lack of melanin pigmentation. The condition affects people worldwide, regardless of gender or ethnicity.

People like Chrisha, who have Oculocutaneous Albinism Type 2 (OCA2), the most prevalent in Africa region, have limited or no melanin in their hair skin or eyes, causing them to have a lighter skin complexion and hair.

Chrisha dreams of becoming a policewoman, inspired by her sense of duty and justice. Yet, her childhood has been marked by struggles that most people can’t even imagine, struggles that have been amplified by climate change and compounded by government policies that make it harder for her to protect herself from the sun's harmful rays.

The young girl I am interviewing narrates a series of daily challenges she encounters. Whenever it is sunny;, she sometimes cannot even come out of the house due to hot weather.

Chrisha has never known the protective embrace of sunscreen. Her mother, like many others in their community, simply couldn’t afford it. With Uganda's government imposing taxes on imported goods, including sunscreen, access to this vital product has become even more difficult.

The imported goods are charged a value added tax (VAT) of 18% and a 15%, which is not reclaimable. Combined, these taxes effectively charge a 33% tax on all foreign goods and services where sunscreen lies.

As a result, Chrisha is exposed to the harsh realities of a changing climate without any protection, enduring the searing heat and the skin conditions that come with it.

“We are now facing a big challenge of climate change due to our own doing; this may affect the entire world and may vary from one country another”

But the big question here is, “How Do children with Albinism survive the hot weather in Rural areas midst government imposition of taxes on imported goods?”

"High temperatures make my skin itch terribly," Chrisha explains. "When I try to scratch, it turns into scabies, which later become wounds. Sometimes it gets so bad that I have to miss school."

To escape the unbearable heat, Chrisha often finds herself sneaking away to a nearby river a few kilometers from her school to cool off.

"I know it's wrong to leave school, and I risk punishment from the teachers, but I have no choice when my body can't handle the heat," she says, her voice filled with a mixture of defiance and resignation.

Chrisha's struggles don't end with her skin. The intense sunlight also affects her eyesight, making it difficult for her to see what a teacher writes on the chalkboard.

"I always have to check my friend's work to avoid making mistakes because I can't see clearly during the afternoon," she adds. The afternoon sun often leaves me unable to concentrate, forcing me to miss classes and fall behind in my studies.

The emotional toll of living with albinism is equally profound.

Chrisha has faced discrimination and isolation from her peers, who often avoid sitting with her or even interacting with her.

"Some kids think I am a ghost; that I disappear at night, or that I bring bad luck," she says, her voice tinged with sadness. "It’s hard to make friends when people are afraid of you."

Despite these challenges, Chrisha has found solace in football, a sport she loves. She plays for the football club in her village, though even this passion is hampered by her condition.

"When the sun is too bright, I can't see the ball clearly, and I end up missing matches during sunny seasons," she laments.

Sixteen-year-old Rebecca (not her real name), who chose this name in admiration of the former Speaker of Uganda's Parliament, shares a similar experience. Like many girls in her community,

Rebecca’s parents, like Chrisha’s, could not afford sunscreen. Instead, they used local lotions, which did little to protect her from the sun's harsh rays. As a result, Rebecca has endured a life of constant discomfort, with her skin developing scabies that turn into painful wounds.

Rebecca says access to sunscreens was difficult before joining Lyakirema Initiative of Persons with Albinism (LIPA), nongovernmental organization in Kasese district that give them free sunscreen now since her parents were not aware about them and couldn’t afford the price as cheapest lotion goes up to 80,000 Ugandan shillings equivalent to USD 21.47, which is expensive and lotion goes for a month that means every year a parent could spent USD 257.64 equivalent to UG901,740.

However, the Africa Albinism Network indicates that one bottle of sunscreen costs $20-$50.

This can take up 10% to 50% of a person with albinism’s monthly income in Africa and this is why sunscreen is advocated. The World Health Organization (WHO) puts it on a list of essential medicines so that it can be accessible or affordable for many people with Disability in Africa.

The social stigma associated with albinism has been a constant companion for Rebecca.

"People in the village point at me and gossip whenever I walk to school," she says. "They tell their children not to play with me, so I spend most of my time indoors."

Rebecca’s challenges are not just social but also physical. "During high temperatures, I stay inside the classroom all day, avoiding the sun as much as possible.

Even during lunch, I ask a friend to get food for me because I can’t stand the sunlight," she explains.

Like Chrisha, Rebecca’s eyesight is severely affected by the sun, making it difficult for her to participate in activities she loves, like netball and drama. Rebecca, on the other hand, harbors aspirations of becoming a Member of Parliament to advocate for the rights of people with albinism.

She points out that the government's decision to impose taxes on sunscreen has made it nearly impossible for her family to afford the product, which is vital in protecting her skin from UV radiation.

"Sunscreen and eye care should be provided free of charge in hospitals, just like other essential medicines," Rebecca says with determination.

She refers to Uganda’s Persons with Disabilities (PWDs) Act of 2006, which guarantees the right to education, health services, and social protection for persons with disabilities, including children with albinism.

However, the gap between policy and practice remains wide.

Both Chrisha and Rebecca have approached their teachers for help, but little has changed.

Jolly Mbumbu, a teacher who has educated several children with albinism, acknowledges the challenges but lacks the knowledge or resources to provide the necessary accommodations.

"The education system mandates accessible and quality education for all children, including those with special needs. Yet, in practice, we are not equipped to support children with albinism," Mbumbu admits.

The consequences of this systemic failure are dire. Children like Chrisha and Rebecca are left to navigate their education and daily lives with little support, all while the effects of climate change worsen.

Rising temperatures, prolonged sunny seasons, and stronger UV radiation put these children at an even higher risk of developing skin cancer.

Rebecca’s dream of advocating for children with albinism and other disabilities stems from these personal struggles.

Doctors/ Experts Perspective

Dr. Johnson Bwenge Bwambale, an ophthalmologist at Bwera referral hospital, explains that albinism is a genetic condition that affects the production of melanin, the pigment responsible for skin, hair, and eye color. He clarifies that in people with albinism, the melanocytes the cells responsible for producing melanin do not function properly. This leads to lighter skin and hair than is typical for their ethnicity, as well as a range of associated health issues. For children with albinism, one of the most common health concerns is related to vision. Dr. Bwambale notes that, due to the lack of melanin, these children often have difficulty controlling the amount of light entering their eyes. "Melanin is supposed to be present in the eyelashes and within the pupil to regulate light intake, but in children with albinism, this regulation is impaired," he says. As a result, they frequently experience light sensitivity and vision problems. Another major health issue for children with albinism is related to their skin. "Because their skin lacks melanin, they are highly sensitive to sunlight and prone to sunburn," Dr. Bwambale explains.

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The hot, dry season in Africa, characterized by extreme temperatures, can cause severe discomfort and increase the risk of sun damage for these children.

"They tend to fare better in cooler, rainy seasons, but during the dry season, their skin reacts more severely to the sun's rays, leading to frequent complications," he adds.

To mitigate these effects, Dr. Bwambale emphasizes the importance of preventive measures. "We can't prevent albinism, but we can reduce the effects it has on their health.

One of our key recommendations is to limit exposure to direct sunlight by staying indoors or wearing protective clothing." He also advises the use of sunglasses to help control light entering the eyes and recommends sunscreens to protect their sensitive skin.

However, he acknowledges that financial barriers often prevent families from accessing these essential protective measures.

Beyond physical health, Dr. Bwambale highlights the psychological challenges faced by children with albinism. "These children often face severe stigma in their communities.

They are called names like 'children of ghosts' or 'bad luck,' and this social rejection can have a deep psychological impact," Dr Bwambale says.

The alienation they experience due to their skin color and the myths surrounding albinism can lead to issues like low self-esteem and reluctance to attend school or participate in community activities.

Dr. Bwambale calls for greater mental health support for these children, emphasizing the need for rehabilitation programs to help them cope with the psychological toll of discrimination.

He also urges the Ministry of Health to prioritize their healthcare needs by classifying essential protective items like sunscreen and eye care products as part of Uganda's essential drug list.

"These children need more than just physical care; they need mental support and inclusion to live dignified lives," Dr. Bwambale says.

Community Perspective on Children with Albinism

Ikwera Alfred Kule, a community leader, says people have different perspectives on children with albinism and children are looked at misfortune in communities and if a woman has given birth to albino child, culturally they could look at child and mother as people of bad luck.

He added that people with albinism are related to spirits of Mt Rwenzori and if one gives birth to an albino child, it looks like a spirit child.

“It is believed that if one dreams of marrying a white person, culturally they believe that the person has slept with the mountain spirits of Rwenzori,” Kule says.

The Deputy Minister for Information, Mobilization and Kingdom Spokesperson of the Obusinga Bwa Rwenzururu, Barbara Kabanyoro, says the community has a lot of misconceptions that albino children are conceived through sleeping with a white spirit, which is not right

“I recall a case where a man ran away from home after a woman gave birth to albino child, and the woman was tasked to tell the father of the baby,” Kabanyoro says.

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However, Rev. Fr Kambale Balinandi,condemned the act calling it permittivity of highest order, adding that people needs to be educated and sensitized about children with Albino and how are like other children in community to combat that miss conceptions , community have about them.

He says that its only that their skin luck melanin and that is why their skin is different from others but they are human beings like others and poses same blood

Meanwhile, Rev. Fr. Balinandi believes that climate change affects them a lot as high temperatures rise and their bodies are affected, change the color and are found at risk of acquiring skin cancer.

Kabanyoro, the Kingdom Deputy spokesperson, mentioned that Kasese district being on the equator line, weather patterns change and experience high temperatures in the sunny season and very cold weather during the rainy season.

However, she mentioned that as leaders, they are embarking on advocacy for mindset change among the people in the community and leaders at grass root on changing people’s thinking towards children with albinism.

She added that people have to be sensitized about children with albinism and be treated like other children, not to discriminate against them.

“Teachers have to be sensitize on how to treat these children, giving them safe environment as it mandated in the law, protecting them from harm and their wellbeing, Kabanyoro says

Ikwera is also profound that climate change, especially high temperatures affect children with albinism and their wellbeing in schools is much affected during hot seasons , where he mentioned that some even miss school during hot seasons.

Meanwhile, the community has embarked on tree planting to mitigate climate change impact in the community as well as children with albinism benefits.

“There are some misperceptions people believe in towards people with albinism and which are to be condemned , like when you sleep with an albino you get riches and heal HIV/AIDS and their body parts for rituals,” Kule says.

He condemned the minister for health remarks neglecting the health issue of albinism of skin cancer considering it as a small issue yet they have the right to health like other people.

The Minister for Health, Hon. Dr.Jane Ruth Aceng, revealed that as a government, they can’t concentrate on skin cancer issues suffered by persons with albinism and leave out fundamental issues like malaria which kills many people every day in Uganda.

“The country needs to do things step by step, handle the emergencies and we get down with other fundamentals and right now the most serious emergency in the health sector is malaria,” Hon. Ruth says

Ikwera, like Bahuka, argued that every death counts and matters in the country, condemning a minister that persons with albinism have rights to health like any other people and it's unfair for the Honorable minister to neglect such health issues.

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However, they recommended that the country has to waive off taxes from the sun screen and be given them freely like any other essential drugs at health facilities in the county and the problem could be solved.

The kingdom spokesperson Kabanyoro added her voice to those of the other leaders, calling on the government of Uganda to waive off taxes on the sunscreen lotions and consider them as essential drugs in health facilities.

Civil Society Organisation Advocacy

Civil society organizations like Lyakirema Initiative of Persons with Albinism (LIPA) and the Albinism Umbrella (AU) are trying to fill the gap by providing sunscreen to vulnerable children.

Emmanuel Bahuka, the Executive Director of LIPA, highlights the severity of the issue.

"In Kasese District alone, persons with albinism are 100 times more likely to develop skin cancer due to increased exposure to UV radiation from rising temperatures. Many don’t live beyond 55," he warns.

A 2023 survey by LIPA found that Kasese has 247 persons with albinism, 81 of whom are school-going children. SOURCE: LIPA Baseline assessment report 2023

The obstacles faced by children with albinism extend beyond healthcare. Superstitious beliefs in some communities have led to discrimination, isolation, and even violence against these children.

Rebecca recalls being pointed at and shunned by her peers. "People call me bad luck, and some parents tell their children not to play with me," she says. Such social exclusion compounds the physical challenges they face due to climate change and inadequate medical care.

LIPA and Albinism Umbrella, together with other advocacy groups, are pushing for greater awareness, education, and inclusion for children with albinism.

Bahuka emphasizes the need for action: "As climate change intensifies, we must educate children with albinism on how to demand their rights. Authorities, especially the government, need to prioritize their inclusion in all sectors, especially health and education." He says

In the fight to protect children with albinism in Uganda, civil society organizations like Albinism Umbrella have taken center stage in advocating for their rights and well-being.

Mrs. Olive Namutebi, the Executive Director of Albinism Umbrella, shares the organization's mission and their tireless work in supporting these vulnerable children.

Albinism Umbrella’s Mission and Vision With a vision of "A society in which persons with Albinism are dignified and realize their full potential," Albinism Umbrella has dedicated itself to promoting and protecting the rights of persons with albinism (PWA) in Uganda through research, partnerships, and advocacy.

The organization's mission reflects its commitment to improving the overall well-being of children with albinism, ensuring that their rights to education, health, and social inclusion are upheld.

Despite these efforts, significant challenges remain. As Namutebi notes, stigma and neglect continue to plague children with albinism.

"Many children with albinism are abandoned at birth, left to be raised by grandparents or other relatives while their parents reject them," she explains.

The impact of this abandonment is profound, with many children missing out on education. According to research conducted by Albinism Umbrella between 2018 and 2021, 50% of school-age learners with albinism were out of school due to poverty, bullying, and name-calling.

Namutebi also draws attention to the compounded effect of climate change on the well-being of children with albinism.

"Climate change has a direct impact on persons with albinism, as sun exposure leads to skin cancer. The extreme weather conditions in Uganda have made it even more difficult for these children to walk long distances to school or gather firewood, all under the scorching sun," she explains.

This not only limits their participation in daily activities but also increases their health risks.

Advocacy and Awareness In their efforts to advocate for the rights of children with albinism, Albinism Umbrella engages in advocacy at multiple levels such as community, national, and global.

At the community level, parents and caregivers are educated on how to care for their children with albinism.

On the national front, the organization collaborates with Uganda’s Ministry of Education to ensure that learners with albinism receive appropriate accommodations, such as protective gear and large print exams from the Uganda National Examinations Board (UNEB).

Their advocacy extends to the health sector, where they partner with institutions like Mengo Hospital, National general referral and Ruharo Mission Hospital to provide sunscreens and eye care services.

Namutebi points out that their advocacy efforts have already led to the recategorization of sunscreens from cosmetics to assistive technology, bringing them closer to being included on Uganda's essential drug list.

Community and Government Engagement Albinism Umbrella works closely with local communities and government bodies, leveraging government structures to identify and support children with albinism.

The organization has a memorandum of understanding (MOU) with Uganda's Ministry of Health and Ministry of Gender, Labour, and Social Development, as well as partnerships with other government agencies such as the Equal Opportunities Commission (EOC).

While Uganda has policies to support children with albinism, Namutebi emphasizes the need for more effective implementation.

She calls for more awareness among stakeholders especially schools and healthcare providers about the unique needs of children with albinism. "We have enough policies to support children with albinism, but we need their implementation. Stakeholders need to provide reasonable accommodations," she urges.

As the effects of climate change intensify and the challenges faced by children with albinism become more pronounced, the work of organizations like Albinism Umbrella is more critical than ever.

Namutebi’s call for action echoes the pleas of children like Chrisha and Rebecca, who continue to navigate a world where their rights to education, health, and safety are compromised by both systemic failures and environmental threats.

The effects of climate change are far-reaching and particularly dangerous for vulnerable populations.

A UN report by the Independent Expert on Albinism, Muluka Anne Miti-Drummond, reveals that people with albinism in Africa are 1000 times more likely to develop skin cancer, with many dying before the age of 40. The report also highlights how climate disasters disproportionately affect people with disabilities, who are four times more likely to die in such events.

As Uganda grapples with the impacts of climate change, children with albinism like Chrisha and Rebecca are bearing the brunt.

"I want to change the policy that makes sunscreen inaccessible by removing the heavy taxes on it," she emphasizes passionately. "For people with albinism, sunscreen is a necessity, not a luxury. The government must lift these taxes and ensure that eye care and skin protection are provided for free, as mandated by the Persons with Disabilities (PWDs) Act." Rebecca emphasized.

A story by Innocent Kiiza

THIS STORY WAS PRODUCED WITH THE SUPPORT OF MEDIA MONITORING AFRICA AS A PART OF THE ISU ELIHLE AWARDS.

ENDS

NB , NAMES OF THE CHILDREN ARE NOT THEIR REAL NAMES