Mohamed Kaifala Sesay, Programme Officer, Sierra Leone Albinism Foundation. Photo by Stephen V. Lansana
Q: I ask this of everyone: what myths have you heard in Sierra Leone about albinism?
MKS: There are so many myths and misconceptions. In Sierra Leone, people believe that persons living with albinism do not die. This is just mere fabrication because I know of two colleagues who died after they were diagnosed with skin cancer. They were unable to get the required medication and they ended up losing their lives.
Q: Do you keep a database on persons living with albinism?
Yes, we have a database. According to the census conducted by the Statistics Sierra Leone in 2015, nationwide there were 501 persons living with albinism. The only thing I can say is that six years later, our number is a bit higher now.
Q: How many persons with albinism do you have in your organization?
MKS: As of now we have 300 nationwide. We have our regional networks. As I speak, we have just finished our training on strategic planning held for our membership.
Q: How do you receive help?
MKS: We receive help in different ways. As I speak, we have a two year project sponsored by OSIWA for building a resilient albinism network for development in Sierra Leone. And part of this project, we have held a training session and also done school visitations to educate the school authorities on how to interact with persons that are having this particular condition in terms of getting assistance, because of the uniqueness of our skin, our visual impairment, I think these are all things that need to be taken into consideration in terms of us giving special attention whilst in school.
We are also hoping that we will have support from other donors who will come onboard and help us because we have a number of projects that we want to implement.
Q: How difficult is it to get the cream that protects the skin from sun burn?
MKS: It is very much difficult. The Sun Cream is very expensive and difficult to afford. Three years ago, we implemented the programme “Albinism for Activism Sun Cream Drive.” That project allowed us to collect a lot of cream because there are people in the diaspora that advocate for us. As I speak right now, I will be collecting some of this cream that was sent for us from Norway. Whenever we have the sun cream, we call our membership and share it with them because we learned that many people can’t afford the cream, and going under the sun [unprotected] will damage the skin.
Q: What is the cost of the Sun Cream?
MKS: The least sun cream cost about $20 or $30 which is like 200,000 to 300,000 Leones.
Q: Does every person with albinism need sun cream?
MKS: Yes, every person living with albinism needs the sun cream. If [a person living with albinism] fails to apply the sun cream when they go under the sun, there is a tendency to develop sunburn and sunburn most times develops into skin cancer. We have a case with a lady in Bo city who has been diagnosed with skin cancer after she developed sunburn.
Q: The National Commission for Persons with Disability (NCPD) said they support PWDs with money on a case-by-case basis. He said, any individual or group who sends a proposal at the NCPD will be considered for assistance. Have you tested the process?
MKS: I have never tested the process. But I never had knowledge about that. I usually go to the Commission at least once a month. We have proposals with them at the moment, but I will tell you that we have never benefited from them in terms of them supporting our sun cream drives. The only thing we have been benefitting from is that, when we have colleagues with university requirements, we write the Commission and the Commission will confirm with the University Registrar that those students are PWDs and the fees will be waived off. That is one major benefit when are enjoying from the Commission, but in terms of the sun cream, I have never witnessed that.
Q: Are persons living with albinism afforded free healthcare, as established in the Disability Act?
MKS: We are not benefitting from it. Many times, the laws are there, but they are not fully implemented. Two of our colleagues died at the Connaught hospital two years ago because they did not receive the right medication. I walked to the Commission to see how they can aid them but at the end of the day, they were never given the support they needed. So, both of them died.
This is very much serious, if the laws are there it means they need to be implemented properly. That is why I was very happy when they were reviewing the Persons with Disability Act. They called upon us and we gave vibrant contributions.
Q: What does the government need to do to properly support the people living with albinism?
MKS: The government needs to have a special dermatologist assigned to persons with albinism. I visited Mali two years ago, and they have a hospital specifically dedicated to issues that have to do with skin diseases. Persons with albinism most times suffer from skin diseases. We are calling on the government hospitals to assign a dermatologist to persons living with albinism in one of the big government hospitals. For instance, if the assigned dermatologist is at Connaught, when such issues arise, we will just take the person to Connaught hospital because we know that a specialist is there to help them.
We also call on the government to import the sun cream whenever they are importing essential drugs that have got to do with drugs that can help improving the health conditions of the people. I think sun cream needs to be included as essential drug that the government imports to improving the health sector.
Also, the government needs to closely monitor hospitals in the implementation of the free healthcare provisions as established in the Disability Act. These provisions are not properly implemented.
Q: How have the officials reacted to your calls for support?
MKS: We hope that our voice will be heard one day because the perceptions are changing. We hope that there will be a time when the government will consider and listen to our calls. There are signs that they will someday listen to us. For example, in the past they did not invite us on their programmes, but now the Social Welfare Ministry usually invites us whenever they have a programme dealing with disability. It’s a gradual process. I believe and I am confident that one day the government will provide all what we need so that persons with albinism will live a better life in Sierra Leone.
Q: Are schools properly accommodating persons living with albinism?
MKS: That has been a problem. Most times when we go to schools, we advise teachers and school authorities to make sure that they allow persons with albinism to occupy the front rows because of their eyesight disability.
Also, we always tell the government, especially to the Ministry of Education, to provide assistive devices for persons with disabilities, of which persons with albinism need sunglasses. Three years back, Apex Optic provided free sunglasses for persons living with albinism. But in terms of the government [Ministry of Education] it is high time they considered providing persons living with albinism with assistive devices that will aid their vision in school.
Q: Anything else to add?
MKS: It is high time we embraced inclusion and say no to discrimination because persons living with albinism need to live a better life. Let’s embrace persons with albinism. They are unique, they have a huge potential, let’s stop the discrimination because it can make them not to reach their full goal they want to attain in society.
I am calling on persons living with albinism to always come out of their hiding places. It’s high time they come and show themselves to the world that they can be capable of doing [great] things.
By Stephen V. Lansana
15/03/2021. ISSUE NO: 8020