COVID-19: Albinism Umbrella (AU) and Organization for the Integration and Promotion of People with Albinism (OIPPA)

“People have a fear, of course, because today in Rwanda people are in lockdown,” adds Nicodeme Hakizimana, Executive Director of OIPPA. “Everyone is staying at home. If it happened, no one can know what has happened.

Another harmful myth – the coronavirus is an attempt to kill white people. According to rumors circulating in Rwanda, “people with albinism, as they are assumed to be white, they will die at the first point,” says Hakizimana. “People with albinism are very afraid because of these rumors and no one has talked about this issue to facilitate people with albinism that what they have heard is wrong news. The government needs to provide the true information about these rumors.”

“There is a fear to report, knowing you are locked in this community with the perpetrators,” says Olive Namutebi, Executive Director of the Albinism Umbrella.

Overall, the most pressing issue facing persons with albinism in these two countries is a lack of access to enough food, basic hygiene supplies to keep themselves safe, and sun screen. “During this time of lockdown, people with albinism are suffering from hunger because most of the families of people with albinism are living in poverty,” says Hakizimana. “Every day we listen to requests from our members to buy for them soap, to help them to buy water so that they should protect themselves against this COVID-19.”

Both Hakizimana and Namutebi say members of their organizations are running out of what Namutebi characterizes as “the most precious jewel” – sun screen. “I keep getting some calls of parents whose creams are, like the sun block, finished. Unfortunately, they have not been able to deliver because they’re not even allowed to drive to their places to buy more,” she says. “I’m telling them to stay indoors and only come out in the morning and in the evening. Because, really, there’s nothing we can do. We’re telling them to wear long sleeves. Some of them have hats, so we tell them, ‘If you really must go out, make sure this person has sunglasses to begin with.’ “

“During this pandemic period, people with albinism don’t have sun lotion. Their skin is today in very dangerous time,” adds Hakizimana. “The government of Rwanda does not distribute sun lotion for people with albinism. When they distribute food, they should distribute sun lotion for people with albinism.”

Hakizimana says that even when the lockdown in his country ends, persons with albinism will continue to feel its effects for months to come because of ongoing stigma and discrimination. For the members of OIPPA, “most of them, they didn’t have a job. It was very difficult for people with albinism to [go] to school.” He anticipates these barriers will be even greater post-COVID-19: “Restoring our normal life will be very difficult.”