The Association of Persons Living with Sickle Cell Disorder, (APLSCD) has appealled to Professor Charles Chukwuma Soludo, Commissioner for Health, Dr Afam Obidike and well meaning Anambrarians to please come to their aid to put an end to the ongoing neglect, abuse and diversion of welfare packages meant for the sickle cells victims.
Their cause was simple “allow us to breathe; provide certain welfare that would enable us live a normal life like other persons living with different disorders”. In order to achieve this, they began the process of enacting a Sickle Cell Law for Anambra State, News Echo reports.
National Coordinator, APLSCD and Director, Sickle Cell Orphanage and Underprivileged Home, Aisha Edward Maduagwu disclosed this in a press briefing with journalists during the weekend at her office in Agulu.
Mrs Maduagwu equally alleged that one Chinwe Nnagbo of Chiemma Homes in Awka, connived with the Anambra State Commissioner of Women Affairs Mrs Ify Obinabo to clone activities of the association.
According to Aisha “In order to achieve their agenda of using Sickle Cell Disorder as a business enterprise hiding under the cover of the state government. These individuals Mrs. Chinwe Nnagbo and Miss Ifunanya Faith Micheal Nwanadile joined the association with the guise of working for their selfish and criminal cause, claiming that their children were living with sickle cell disorder. Unknown to the association they were working towards cloning the Association’s activities and exploiting the association to their advantage”.
“When the association found out their ulterior motives and disbanded them from the association they started a parallel association in cohort with the commissioner for child and Women Affairs, who offered them Government protection to also operate a deceptive home (Chiemma Community Children Home) using Sickle Cell as their initial front, just to hoodwink the unsuspecting government functionaries to patronise their adoption racketting business and looting what naturally should go to persons living with Sickle Cell disorder”.
Mrs. Aisha Edward Maduagwu, the organisation explained that “As part of APLSCD’s drive for its cause, the association paid the commissioner for Women Affairs, Mrs. Ify Obinabo a courtesy visit to intimate her of the activities, challenges and frustrations of the association with the ministry, shortly after she was inaugurated. This visit was very cordial, as she promised to extend warm hands of support and relationship to the association.
However, this would not be the case as the Commissioner has constantly ignored appeals of the Association. This, the association has taken in good faith, and have understood to be possible consequences of not running a home that allows adoption which has been said to be more beneficial and Juicy to the ministry, and as such the association is likely perceived as a liability to the state by the commissioner since SCD persons are considered not adoptable.
Quoting, “the Section 10: sub section 3: of the Sickle Cell Disease (Control and Eradication) Law, 2019 which stipulates persons qualified to be a member of the monitoring team of sickle cell disorder in the state. One of the category of these persons is a member of the Association of Persons Living with Sickle Cell Disorder amongst other members from different medical professions”.
However, Mrs Maduagwu lamented that “the former Commissioner of Health, Mr. Vincent Okpala neglecting all advice from well meaning Anambrarians withdrew members of the APLSCD who were first on the monitoring team and replaced them with individuals who are not in the medical field nor living with sickle cell disorder. This is a clear contravention of the stipulations of the Anambra State Sickle Cell law”.
She disclosed that every June 19, is World sickle cell Day, and APLSCD have always organised events to commemorate this day every year for the past 8 years. For 2023, the event was moved to June 20, 2023 and invitations sent to benefactors and relevant government agencies to that effect.
This year’s event was a special one for the Association as it was organised in partnership with Anambrara State Primary Health Agency. In order to ensure full participation of the state government, an official invitation was extended to the commissioner of Women Affairs. Hon. Mrs Ify Obinabo and this invitation was duly acknowledged.
“Unknown to APLSCD, Mrs. Chinwe Nnagbo And the commissioner for Women Affairs, had another Agenda for this world commemoration. They organised a pararrel event, where they hired persons who claimed to be living with sickle cell disorder, in order to collect welfare materials from the wife of the Governor and top government functionaries”.
It is worthy to note that APLSCD aren’t against anybody or organisation organising events to commemorate the World Sickle Cell Day, as such advocacy is much needed in the cause. However, it is a criminal intent when such organisers hire people and label them as persons living with sickle cell disorder just to hoodwink the public and government into providing support, yet they operate with several conflicting names like Chiemma Empowerment Foundation which has no business or link with sickle cell advocacy.
Donations meant for persons living with sickle cell disorder in Anambra State where diverted by Mrs Chinwe Nnagbo and her cohorts.
If truly, Mrs Chinwe Nnagbo meant well with her program, how many persons living with sickle cell disorder in the state did she reach out to with the donations she received on June 20, 2023 on behalf of them.
Mrs. Chinwe Nnagbo did not stop at this, she started an orphanage home which she claims are for persons living with sickle cell disorder but in reality none of the inmates of the said orphanage home are persons living with sickle cell. A further investigation could reveal that these inmates may be hired and used to gain funds from benefactors.
“It is clear that Mrs Chinwe Nnagbo and her cohorts have business interests and not philanthropic interests for the sickle cell cause they claim to be promoting.
Because of these outright neglect, the Association during the height of COVID 19 lost about 24 lives of both the orphaned and underprivileged members.
It is worthy to note that the Governor Soludo led administration has been supportive to the Association, particularly through the ministry of health, as the Commissioner of health, Dr. Afam Obidike Ensured that members of the Sickle Cell Orphanage and Underprivileged Home Agulu were enrolled into the Anambra State Health insurance scheme.
Meanwhile, The organisation has recorded many successes for her members, from paying their school fees, building a vocational training centre in Agulu, providing them immediate and effective healthcare when they need them (which they need quite often), providing welfare needs for them. In a bid to ensure that their members do not continue to suffer the degradation and neglect they often get from their families.
