By Nasra Bishumba
L-R: Francine Mutoniwase, Frank Ibyikora, and Fabiola Ndihokubwayo, three siblings living with albinism during a recent TV interview. The Government has implemented subsidies on sunscreen body lotions and creams for albinism skin, effectively easing their costs. / Photo: Courtesy
Two years since President Paul Kagame urged concerned institutions to improve access to sunscreen body lotions and creams to afford people living with albinism normal lives, the products have arrived in the country and their distribution will begin soon.
Albinism is a condition that comes about as a result of lack of pigmentation (melanin) in the hair, skin and eyes, causing vulnerability to the sun and bright light.
Kagame made the call in 2018 during a ’Meet the President’ session at Intare Conference Arena in Kigali, where he was meeting over 2,000 young professionals from across the country and the Diaspora.
At the time, the Representative of the Organisation for Integration and Promotion of People with Albinism (OIPPA) in Rwanda, Dieudonné Akimaniduhaye, told the President that protective sunscreen body lotions and creams were not only rare on the local market, they were also expensive, depriving those who need them an opportunity to live normal lives.
“All sunscreen lotions and creams that are imported are highly taxed and that makes them very expensive. We wish that these lotions and creams are made affordable for us living with albinism so that we are all able to pay for them using Mutuelle de Santé,” he said.
Emmanuel Ndayisaba, the Executive Secretary of the National Council of People with Disabilities (NCPD), talks to the media on Monday, November 30./ Photo: Sam Ngendahimana.
President Kagame immediately agreed and tasked officials in charge to follow-up on the issue and resolve it as soon as possible.
“I completely agree with you. There’s no reason why we should even discuss the matter any further. People living with albinism should be facilitated and the issue should be dealt with as soon as possible.” he said.
United Nations data indicates that in some countries, the majority of persons with albinism aged between 30 and 40 years die from skin cancer while others end up visually impaired.
However, with access to regular health checks, sunscreen, sunglasses and sun-protective clothing, the challenges can be avoided.
In local supermarkets, skin protecting products come in different categories and prices. In affordable pharmacies, prices range between Rwf8,000 and Rwf10,000 for adults and Rwf6,000 for children, prices that most people living with albinism cannot afford.
Emmanuel Ndayisaba, the Executive Secretary of the National Council of People with Disabilities (NCPD), told journalists at a press conference to kick-start the ‘Human Rights Week’ activities that the products required by people living with albinism had arrived in the country and were being distributed in all health centres across the nation.
“They were purchasing the products at about Rwf10,500 in pharmacies but the government ordered for them through the Food and Drug Authority and they will be distributed to all the health centres where they will cost as little as even Rwf2,000 for those with Mutuelle Health Insurance,” he said.
Ndayisaba said that a meeting had been held on November 12 to discuss how the distribution would be done and how best to ensure that the subsidised products are sold to the right beneficiaries.
“These products can be used by people with regular skin too, so every sector and district has come up with a list of the people living with albinism so that these products are sold to the people who actually really need them,” he said.
The prevalence of albinism varies across the world. According to the World Health Organization, estimates vary from 1 in 5,000 to 1 in 15,000 people in Sub-Saharan Africa.
In Europe and North America, 1 in 20,000 people have the condition, according to the NGO ‘Under the Same Sun’.
However, data on the prevalence of albinism by country remains scarce.
Source New Times.