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Jake Epelle, founder of Albino Foundation
Stakeholders on issues relating to Albinism have refuted the claims of the supposed treatment of about 5,500 members for skin cancer at the National Hospital, Abuja.
Jake Epelle, the founder of Albino Foundation had claimed that his organisation referred no fewer than 5,500 people living with albinism to the hospital for treatment. He also claimed that over N30m was expended.
They also urged the FG to always channel funds meant for Albinism to official organs.
Refuting the claim at a joint Press Conference by stakeholders held in Ado-Ekiti, the founder of Disability Inclusion Centre (DIC), Muyiwa Abegunde said they were embarrassed by the alleged false statistics being bandied in the media.
Abegunde who was supported by Nnene Bassey, the President of Advocacy for Persons with Albinism and cluster head for Persons with Albinism, Akwa Ibom Chapter gave a seven-day ultimatum to Epelle to substantiate his claim or retract the report.
He said, “There is a statement on Sunday, 13th March 2022 that the Chief Executive Officer of the Albino Foundation, Mr Jake Epelle, says his foundation has referred 5,500 persons with Albinism, Skin Cancer to the NHA for treatment of which people says the data given is totally wrong.
“If this is true, we are calling him within seven days to come out with the accurate data, the names of those albinos who have been referred to NHA between 2017 and 2022 and publish their names irrespective of State,” he added.
He charged the FG to direct all funds meant for people living with disabilities to the ‘National Commission for Persons with Disabilities’ rather than granting general funds or grants to Non-Governmental Organisations (NGOs) like the Albino Foundation.
He said it was worrisome that Epelle was making the spurious claim when Albinos were dying in their numbers across the states for lack of attention by the government.
Abegunde also disclosed that about seven of his members have died in Ekiti, including the former a former chairman of Albino Association, Mr Alufa in the last five years.
” It was sad that this spurious claim was coming at a time our members needed assistance from the government as well as spirited Nigerians. We have about 4,500 members in Ekiti . We have lost about seven members. The most annoying aspect of it is that our late former chairman died for lack of help. We wrote to the government but the money was not released until we lost him. The fund was later given to the deceased wife
“Even the free treatment of skin cancer policy of the Federal Government was poorly executed before it was stopped. How can you ask Albinos to come to Abuja without making provision for accommodation and other logistics?” Abegunde lamented.
Also, Nnene Bassey, the President of Advocacy for Persons with Albinism, who also doubles as the cluster head for Persons with Albinism in JONAPWD, Akwa Ibom Chapter, described the claim as selfish while charging the general public to enable people with disabilities effectively and fully participate in political and public life on equal basis.
In her words, “That is not the truth; he is looking for persons with Albinism for his own selfish and self-centred interest. According to the Convention on the right on persons with disabilities, an international human rights treaty of the United Nations, article 29 says that persons with disabilities should effectively and fully participate in political and public life on an equal basis with others, directly or through freely, chosen Representatives. They have the right to vote and be elected.”
In her submission, Onyemaechi Constance, Leader of Persons with Albinism sought accurate statistics on the matter to the public while the health care for skin cancer should cut across the country with equity.
“Data should be made available to the public, names while we also appoint independent bodies to confirm it. Also, the skin cancer treatment shouldn’t be political; it should cut across all Health cares for albinos.” She said. (Daily Independent)