By Jones Anlimah
The Ghana Association of Persons with Albinisim (GAPA), has celebrated this year’s International Albinism Awareness Day with the theme ” 10 Years of Albinism Awareness Day: a Decade of Collective Progress.”
At a ceremony to mark the day at Ho, in the Volta region, a skin specialist Dr. Janet Aryee-boi, urged government to include the provision of sunscreen to person’s living with albinisim under the National Health Insurance Scheme.
This according to her will enhance access and help reduce the high incidence of skin cancer within the albino community, ultimately saving lives.
International Albinism Awareness Day, observed annually on June 13, is celebrated annually to raise awareness, combat discrimination, promote inclusion, highlight health issues, and celebrate the achievements of people with albinism, a genetic condition characterized by a lack of melanin pigment in the skin, hair, and eyes.
The theme for this year’s awareness day “10 years of Albinism Awareness Day: A Decade of Collective Progress.”, emphasized the collective achievements over the past ten years and underscored the importance of ongoing collaboration and support for the albinism community.
This year’s event drew members from The Ghana Association of Persons with Albinism (GAPA), from 4 regions including Greater Accra, Oti, Eastern and Volta regions.
The Albinism Program Coordinator at Engage Now Africa, Mr Kwame Andrews Daklo, was not happy with governments’ lip service on issues concerning persons with albinisim over the years.
He highlighted the progress made over the past decade in improving the lives of individuals with albinism through advocacy, education, and community support.
“You might not see any dignitaries like ministers and deputy ministers here because over the years we have invited them to these events and they only come and go and do nothing. So we have shifted our focus to providing services to persons with disabilities who deserve it more, but we are going to be going to them instead of them coming to just give us a talk” he remarked
He noted that Engage Now Africa has engaged over 300 communities across the country to ensure a changed behavior towards the albino community. “There has been a lot of engagement, especially in the community. We have also reached out to several individuals with disabilities who are suffering from skin cancer. We have also supported several individuals who have acquired sunscreens and also reading lenses. We have supported several individuals who are in school and we continue to do that”, Mrr Daklo added.
The Director of Academic Programme at Ensign Global College, Dr. Stephen Manortey said the college want to be the voice of GAPA to help effect positive change in the lives of person’s living with albinisim. “Ensign Global College is going to work with you to help address your situation. If you want to demystify this condition, get the whole nation and the group to understand that we are just unique individuals, but we deserve every right in life.”, he said.
A dermatologist at the 37 Military Hospital, Dr Janet Aryee-boi, said skin cancer is the major health problem confronting the albino community in Ghana as a result of exposure to the sun.
According to her about 90 percent of persons living with albinisim die of skin cancer. This she said was because access to sunscreen, a protective cream for persons living with albinisim remains a challenge and appealed for assistance.
“So sunscreen is a cream that acts as a filter so if I put it on my face and I expose myself to the Sun the cream stands in between the Sun and me and can prevent up to 90% of the Sun rays and reduce drastically the risk of skin cancer. It’s difficult to get it. You can only get in certain pharmacy and it’s too expensive.” she said.
Dr Aryee-boi added “In normal we are talking about 200-300 cedis. And this is something you’re supposed to apply several times a day forever for the rest of your life. We need to be able to produce it ourselves Or we need it on NHIS so that at least people with albinism and not like everybody who wants to use sunscreen for whatever reasons should get it for free, but people with albinism should be able to get it for free or at a reduced cost.”
As part of activities to mark the day, members underwent a health screening exercise.
