Climate Change Puts People with Albinism at Grave Risk
Zimbabweans with albinism face life-threatening challenges as climate change intensifies, exacerbating heatwaves and making sunscreen unaffordable
BY FAIRNESS MOYANA | @The_CBNews | editor@thecitizenbulletin.com | FEB 20, 2024
Shorter version
For 10-year-old Grace in Hwange, Zimbabwe, getting to school means a risky 7km walk in the scorching sun. But Grace has albinism, leaving her skin highly sensitive to UV rays. With heat waves intensifying due to climate change, the intense sun is too dangerous for Grace without protection. Unfortunately, her mother can no longer afford the expensive sunscreen Grace needs. As prices continue rising in Zimbabwe, people with albinism are facing a dire situation. “The sun burns my skin painfully,” says Grace. Climate experts warn that conditions will only worsen if inclusive action is not taken. Activists are calling for more support, such as subsidies, to ensure those most vulnerable like Grace can access the sunscreen that is critical for survival in Zimbabwe’s changing climate.
Longer version
Like so many other children her age, Grace loves going to school. In class the ten-year-old sits in the front row, close to the blackboard, enjoys learning her alphabet and coloring before hanging out with her best friend, Sihle, at breaktime.
However, of late she has been forced to skip school because of her condition, which has been worsened by her failure to get sunscreen lotion to protect her from the blistering heat waves that have been battering the earth.
Grace lives in Mabale, Hwange district and has albinism, which means she has lower levels of melanin in her skin and therefore looks much paler than most of her classmates. She has to walk about 7km one way daily to her school.
This genetic condition affects as many as one in 5,000 people in sub-Saharan Africa, leaving people at very high risk of skin cancer. Albinism is a relatively rare, non-contagious, genetically inherited condition that affects people regardless of race, ethnicity or gender. The condition is characterized by a significant deficit in the production of melanin, which results in the partial or complete absence of pigment in any part or all of the skin, hair, and eyes.
Albinism often results in two congenital and permanent health conditions: visual impairment to varying degrees and high vulnerability to skin damage from ultraviolet rays, including skin cancer.
Due to this condition, people living with albinism often face a range of significant human rights violations that span their entire lives, limiting their full enjoyment of rights.
Grace says in addition to the unrelenting heat, she has enough to contend with — the discrimination that includes verbal abuse and bullying at her school after being abandoned by her father, who believed she was cursed or diseased.
The heatwave has been tormenting me more than the boys at school who make fun of me. I cannot move in the sun without wearing a hat or clothes that cover my hands and sometimes my legs. It burns; it’s painful,” she winces in pain at the memory.
To make matters worse for Grace, her mother cannot afford to buy her the much-needed skin care products such as sunscreen, soap and eye drops, which are way too expensive for the ordinary folk.
In Zimbabwe, retailers sell the lotion at high prices that range from US$22 to $35 for a 250-milliliter bottle of sunscreen lotion. This is much too expensive for most persons with albinism, who use a tube that only lasts a few weeks with intensive usage.
Pharmacies blame the import tax on these products for the price tag, and persons with albinism, especially in marginalized communities, have to rely on the benevolence of donors. Even with donations from welfare organizations, the lotions are still not widely accessible for many Zimbabweans living with albinism, who number an estimated 70,000.
Charity organization Noble Hands Zimbabwe Trust, which has been lobbying for government subsidies on skincare products, welcomed the production of sunscreen lotions locally by the University of Zimbabwe, arguing that the drive was motivated by the high prices of importation, which also made prices fluctuate from USD $15 to 22 a tube.
Forget the risks of abandonment children with albinism face, coupled with other barriers such as widespread discrimination that includes verbal abuse, bullying, exclusion from public services, and difficulty finding jobs. There is a new threat in the form of climate change.
The fluctuations between the heat and very cold winters also affect those who have been operated on and affect their mobility. The heat wave that swept across the country lately led to extreme headaches, skin burns among persons with albinism, and increased heart problems. Zimbabwe recorded high temperatures of between 40 and 42 degrees.
Hwange-based disability rights activist Octavia Phiri says studies show that disabled populations are disproportionately affected by climate change at three different stages.
“It is well known that people with disabilities are disproportionately affected by climate-related disasters,” Phiri says.
Maryleen Ncube, a former farm laborer and mother of two children, is battling cancerous wounds and says her situation was exacerbated by the failure to access skin cream, sun block, eye drops, and soap for sensitive skin, which are essential interventions for persons with albinism.
“The sun is also our biggest enemy since we are born without pigment, which means that if my skin is over exposed to the sun, it’s at risk of getting cancerous wounds, and people with albinism succumb to different types of skin cancer,” Ncube says.
“Climate change is affecting us as people with albinism, and also the most affected are women given the fact that they are historically looked down upon. So having this condition for a woman means facing double stigma, and when it comes to access to employment, it’s another difficult hurdle as the jobs we get are outdoors such as gardening, resulting in exposure to the sun.”
Thomas Sithole (34) says he was forced to quit his job as a gardener after the current heat waves caused him sunburn due to exposure to the sun.
“I have been doing menial jobs such as gardening and general housekeeping but I was forced to quit after suffering serious burns from exposure,” he says. “The changing weather patterns are causing great suffering for us, especially access to sunscreen. There is a need for the central government to reduce the price of sunscreen lotions and even make them free in health facilities,” Sithole pleads.
Experts say inclusive intervention is now more urgent than ever arguing that as the earth warms, ultraviolet (UV) radiation increases, making sun exposure an extremely dangerous hazard for people with albinism, especially in hot tropical climates such as Zimbabwe.
Parents of children with albinism, especially mothers, are also subjected to stigma, isolation, and ostracism. Worldwide, people with albinism encounter multiple and convergent barriers to the full enjoyment of their rights to health, education, and work, as well challenges in accessing social services, particularly health-related social services.
Phiri says when it comes to distributional justice, persons with disabilities also face stigma and discrimination, and climate change is escalating these inequalities, placing disabled populations in even more socially and economically disadvantaged positions. She noted that climate disasters have led to people with albinism losing their livelihoods, working longer hours in the sun to cope with food shortages, with some forced to migrate to find climates more suited to their condition.
In her report to the United Nations General Assembly in 2023, the Independent Expert on albinism, Muluka-Anne Miti-Drummond acknowledged that the situation was so dire such that she had been campaigning tirelessly for sunscreen to be made freely available to persons with albinism.
