Persons with albinism decry on scarcity and access to sunscreen products which help in protecting their skin against sunlight.
This was raised in an event brought together people with albinism disability in the districts of Burera, Rutsiro and Rubavu organized by Hand in Hand for Development (HHD) as Rwanda joined the rest of the world for an International Albinism Awareness Day celebrated 13th, annually.
The day is marked for human rights of people with albinism worldwide.
Ndererimana Didace, 59, is a resident of Rutsiro District of Western Province living with albinism like his colleagues, too, in Northern Province who spoke to Kigali Up at the event.
The father of seven said he hardly gets the protective cream in question since he also has to feed his large family.
“I managed to get a house on my own. I cannot get it myself despite as a donation” He noted
“We still lack sunscreen lotion which helps us get our skin protected, and clothes against sunlight. It’s not easy based on our capacity, as well.” Said Aboubakar Habumugisha, a S6 student in Masonry, Rubavu District.
Jeanne Musabyimana, Musasa Sector, Rutsiro District has three children living with albinism.
She shares the same issue with her colleagues whose skin, for some, is developing some scars on their necks and arms.
“Sometimes I do not get it [sunscreen lotion] for protecting their skin [her three children].” The mother of three said
Kigali Up learns that in Rutsiro District, for example, only one health center, Nyabirasi Health Center, has been ordering these sunscreen products for people with albinism disability, according to sources.
The district records 74 persons with albinism according to the previous statistics collected in 2021.
According to one of the district Assistant Manager for Rwanda Medical Supply who spoke to Kigali Up preferred to remain anonymous, there are 270 bottles of sun lotion which have been in stock since last.
Each person was supposed to get two bottles, monthly.
He says the health centers have not requested their delivery since persons with disability complain the products are free of charge.
“They have not ordered for delivery, they say persons with albinism won’t show up to buy them. They know it is free of charge.” He said
In 2020, Rwanda Social Security Board (RSSB) informed all health centers through an entitled letter ‘Reimbursement of sunscreen lotion for disabled people’ following Meet the Present held by August 2018 in Gasabo.
“The beneficiaries of sunscreen will access those products only at the nearest health centers where they will be registered to facilitate the supply. The prescription of sunscreen lotion is provided on a monthly basis where the maximum dose is 300 ml per person.” the letter reads in a part
The letter further details that the “co-payment is Rwf 200 for CBHI beneficiaries and 15% for medical scheme beneficiaries (former RAMA).”
The lotion costs Rwf 8,020.8 with no insurance.
Simon Mundele, is a resident of Rubavu district with albinism disability. He says he gets the little he can from Musanze district instead of going to his nearest health center as RSSB recommends.
“It’s rare to get it. There are some health centers which do not accept Mutuelle de Sante. There are some with it [Sunscreen lotion] but are very limited here. It requires me to go outside the district for an NGO that supports us.”
“I sometimes ignore it based on my capacity. I can even spend a month without.” Said the father of six adding that Mutuelle de Sante can be a solution to as many as vulnerable person’s with albinism.
“I ask that we get it by health insurance and responsible organs follow up the issue so that we start getting them very soon.” He added
Isidore Ntawumenya is in charge of people with albinism at Rubavu District. He says sunscreen lotion is still a challenge to most albinos.
“They often face the issue of lack of sunscreen lotion for protection of their skin. We have ordered it and shortly will distribute them at health centers so that they can access it from there.”
Hand in Hand for Development, the local NGO, which takes care of people with albinism claim it still is hard to develop by themselves as many of them come from vulnerable families.
“They are being challenged by lack of means of development on their own. Most people with albinism come from poor families. There is a need for advocacy to get more support and get such challenges addressed.” Said Patient Niyitegeka, the Executive Director of Hand in Hand for Development
According to the NGO’s data, currently there are 37 in Rubavu District, 40 in Rutsiro and 32 in Burera.