You identify them with their extreme pale skin, white or yellow hair, reddish, violet or brown eyes. They wear protective clothes to protect themselves from ultraviolet rays and high temperatures. The lack of melanin, and skin color pigmentation makes the light rays access their skin easily, this might subsequently damage skin tumors resulting in skin cancer. These are people with albinism (PWA).
Climate change adversity has seen them wear sunglasses and other sun protective clothing including hats above their heads to avoid sun damage to their skin while walking along the streets.
In the realm of development measures on climate change, persons with albinism have overtime been left behind. Be as it may, their cry of dying at a tender age due to developing skin cancer and global effects of climate change cannot otherwise be underestimated.
“Our life span is shortened by lack of Sunscreen Cream Lotion, protective clothing, and After-Sun Lotion. We die at a very tender age because it is rare to find a person with albinism who is over 70 years of age,” this is the revelation of Jerita Mutinda, a person with albinism and the chairperson of Albinism County Network (ACN) in Machakos County.
Her utterance comes amidst speculations and intense debate on the life expectancy of persons with albinism which Mutinda, who doubles up as a board member in Black Albinism Organization, recounted lies ‘between 30-50 years of age’ similar to a 2023 report released by United Nations that a majority of persons with albinism die from skin cancer between 30 and 40 years of age.
She further noted “when you don’t apply sun-screen lotion, you are highly prone to skin cancer. Hardening of the skin due to overexposure to the sun rays makes skin crack hence sunburn.”
This she says might further result in wounds which in turn take a lot of time to heal “when the wound heals, it can have some kind of growth which might eventually lead to skin cancer.”
Mutinda allayed fears of skin cancer as a major challenge and termed it as the ‘number one killer of the people with albinism.’
The intense UV rays have also seen people with albinism use protective clothing, After-Sun lotion and Sunscreen cream; a protective lotion to cushion them from sunburn and absorb or reflect ultraviolet rays which Mutinda terms ‘the greatest enemy after skin cancer.’
UV rays and high temperatures are two main factors of climate change that affect people with albinism especially when they are exposed to them.
Wekesa Meshack Seasender, a person with albinism from Trans Nzoia County recalls discrimination he faced in high school_ we were not allowed to do sciences because teachers believed that generally people with disability can only venture into education and not any other course. Due to our condition, so many people do not believe in our capability. Jobs that are deemed suitable for us include receptionists, customer care, or related jobs.
Wekesa admits ‘the sun is their greatest enemy’ per se, he added that “a person with albinism is highly prolific to skin cancer because of the effect brought about by the light rays, that is why we need to use sunscreen lotion,” which he presumed “is not easily affordable because it is expensive.”
He detailed that affording these lotions has not been easy due to the tough economy. Wekesa says some of his friends alike cannot even afford three meals a day, “what of sunscreen lotion?”
The government is providing us with Sunscreen lotion which is about Ksh. 2500 a bottle, with the prolonged sunlight we are using about two bottles a month which requires us to have Ksh. 5,000 and above. Other than that, there is a lotion coolant that we also use every day in the evening, this goes for Ksh. 1,000 or thereabout, he added.
Wekesa who attended Milimani Primary School before transiting to Friends School Namanjalala secondary school in Trans Nzoia, said teachers and pupils were distancing themselves from him, calling him funny names, and denying him participation in various curriculum activities.
It reached a point where I felt enough was enough, I had to pressure my mother who later transferred me to Mitoto Salvation Army in Kiminini, an integrated school. This school had some colleagues who were visually impaired, and others totally blind. I was the second student with albinism in that school, he narrated.
According to Wekesa, he found the new environment very friendly and was given an equal opportunity to participate in scouting, talent shows, and sports. That is where he discovered his full potential.
A report from the National Cancer Institute of Kenya denoted that cancer is the third leading cause of death after infectious and cardiovascular diseases in Kenya. This has exerted significant strains on the population raising a lot of questions on health systems in the country.
Similarly, a report from the National Cancer Summit launched in February 2023, by NIC board chairman, Githinji Gitahi, captured a total of 6,778 cancer cases reported from 42 health institutions in 21 counties. These numbers include people with albinism.
These aggregate figures represent those who have been going through thick and thin to fight the deadly disease. Skin-related cancer is very expensive to treat in Kenya, and those who feel the pinch are patients from remote areas which Mutinda says often lose hope due to the huge expenses they incur on cancer treatment.
Kenya National Commission on Human Rights appraised data collected during the 2019 Kenya population and housing census which included a specific indication for albinism as a disability domain. The last census revealed a total of 9,729 persons with albinism in Kenya.
Distribution of persons with albinism from the aforementioned counting exercise put Kakamega as the leading county with 568 followed closely by Meru County with 563 then Nairobi County third placed with 525 cases.
Counties such as Isiolo, Makueni, Marsabit, and Lamu recorded less than 30 cases of persons with albinism.
See the data visualization below
In the distribution of PWA by sex in the 47 counties, Kakamega County was the highest recording 314 females with albinism, followed by Meru, Bungoma, and Nairobi County respectively. Male persons with albinism were dominant in Meru, Garissa, Kakamega, and Nairobi.
Lamu, Marsabit, Isiolo, Makueni, Samburu, Elgeyo Marakwet, and Laikipia were on the other hand among the counties that recorded the lowest number of persons with albinism in both genders.
Speaking in June Mutinda noted that “the main challenge is poverty, lack of proper health care and huge expenses on skin cancer treatment. Some give up on the way because for radiotherapy you have to go to Kenyatta Hospital. Getting that transport to go for 25 sessions is not easy, more so when you are from a rural area. This does not just involve transport but you also have to look for somewhere to sleep for you to catch up with those radiation therapy sessions. We have got a lot of challenges.”
While narrating, she called on the establishment of more NGOs to purposefully reach out to persons with albinism (PWA) in remote areas to reduce death rates from skin cancer as a result of climate change. This she said could also see the government take skin cancer-related health services to the grassroots level.
The climate change uncertainty has otherwise seen PWA adjust and overcome associated risks. They have adopted the use of body lotion creams such as sunscreen which “has different factors like SPF 1530 and 1550, it gives a 50 times protection,” as recounted by Mutinda.
To protect ourselves fully, we have to apply sunscreen three times a day irrespective of whether it is sunny or cloudy, though the intensity of application varies depending on the weather of the day. We also use After Sun Lotion which is applied every day in the evening to cool off your body. All these are of great help, she narrated.
Mutinda further noted that ultraviolet rays ‘are all over, even when it is cloudy,’ they still need to protect themselves. She recited that there is a slight difference when it is cloudy since they apply sunscreen once rather than thrice as their daily normal routine.
Apart from the above-mentioned protective measures, if you are keen enough you will observe PWA using protective clothes which are long-sleeved to protect their exposed body organs from direct sun rays. This includes pull-necks for neck cover.
The mode of application, three times a day as already mentioned, is good proof that those languishing in poverty find it difficult to manage the condition. Currently a bottle of Sunscreen and After Sun average goes for about Ksh. 2526 and Ksh. 805 respectively according to price tags from various pharmacies and shops.
The government’s effort to provide these lotions through the National Council for People with Disability has been lauded; however, there has been laxity and inconsistency in supplying them to level VI hospitals countrywide. Mutinda explains that there is at times insufficiency due to a lack of proper budgeting by the Ministry of Health.
“There is still a challenge of budget but when the national council has money budgeted for it, they normally provide it. When there is no money then you have to go back to the supermarket, pharmacists to buy from them. It is very expensive because a bottle currently goes for about 2500.”
There is a need for more NGOs and other government parastatals to collectively come up with measures on how they will provide more sunscreen lotions to PWA as a way of mitigating the effect brought about by intense UV rays.
Such related donations should be channeled to people who are in remote and slum areas that are languishing in poverty and have a challenge in affording them.
According to Mutinda “At least there are different organizations coming up with ideas on how to mitigate effects of climate change on albinism though it is still a challenge but it would be of great help if we could have organizations that would specifically come out to distribute this lotions in the rural or interior areas.”
She however decried the lack of support calling out county governments to have a budget to that effect to cater for PWA stating huge expenses incurred in such health services in urban areas.
“We want to engage different organizations and county governments to have a budget that can cater to people with Albinism in each and every county. A person in far-fetched areas of Machakos uses 500 shillings to go pick one bottle in a level VI hospital and this happens every month using the same amount, it is expensive and so they end up not picking the sun lotion.”
Home-based sensitization and awareness of the protective measures should be a continuous process to enlighten more people with albinism to protect themselves from adverse UV rays, intense heat, high temperatures, and other climate change effects.
More albinism-associated organizations should also be incorporated into the government’s climate change advocacy campaigns, according to Mutinda ‘will go a long way in helping people with albinism,’ something which she said ‘without incorporation, then the life span of a person with albinism will still be diminished.’