Sickle cell monitoring committee: Aisha Edward Maduagwu writes Hon Emeka Aforka
I am driven by the continued suffering and deaths of persons living with sickle cell disease among whom are children, to cry out to your office and the entire Anambra State House of Assembly, about the marginalization, discrimination, and fraud being perpetuated by some aides to the ministry of health against us persons living with sickle cell disorder and the association that represents our collective wills and desires.
The Sickle Cell Law which provides for an improvement on our economic and medical survival is now means to personal aggrandizement for some unscrupulous individuals who continue exploit our medical challenges for profits. We fought tirelessly for the law to be passed and accented, but the treatments we have received so far are shocking.
The technical adviser to the commissioner for health on sickle cell, Mrs Amaka Arinze Okoh, has been like a sour grape in our mouths ever since we started dealing with her in the absence of the commissioner. She ceases any opportunity to vilify me, the national coordinator of the association, including making bogus financial demands from me.
The governor earlier responded to a proposal written by the association and approved the sum of 1.5 m naira for the training exercise of about 300 church catechists on modern trends in combating sickle cell disease, to take place during the commemoration of this year’s world sickle cell day. Amaka Okoh demanded 10% of the money from the association as funds set aside to grease the palms of assembly members for speedy and hitch free budget approvals for the ministry of health. When I refused to the deal of 10%, Amaka Arinze Okoh did everything possible to frustrate the association from getting any attention from the ministry henceforth, including conniving with like minds to nominate members for the sickle cell monitoring committee without the legitimate representation of the association as contained in section 10 subsection 4 of the Sickle Cell Disease ( Eradication and Control) Law, 2019.
Even when the ministry did not honour the invitation to attend the commissioning of the Sickle Cell Home Agulu, Amaka Arinze Okoh still called the me to write another financial proposal to the governor when funds from an earlier proposal has not been released to us. The technical adviser on sickle cell has perfected shady plans in using other people’s legitimate financial proposals to siphon money from government coffers. She always ask about the 10% which she claimed to be to the knowledge of the commissioner and directors in the ministry of health, at the detriment of healthcare services to the poor.
It appears that the commissioner for health is handicapped about the excesses of this aide since every petition and alarm we have raised fell on deaf ears. For the commissioner to inaugurate the sickle cell monitoring committee that was handpicked by Amaka Arinze Okoh and her Colleague Jennifer Orajekwe who is a political scientist, in total disregard to the provisions of the Sickle Cell Law, is sending danger signals that all is not well within the ministry of health.
The sickle cell monitoring committee was inaugurated without any formal invitation to the office of the national coordinator of people living with sickle cell disorder who championed the sickle cell law as testified by the health commissioner Dr. Vincent Okpala in a video that has since gone viral in the media space. Rather the duo of Amaka Arinze Oko and Jennifer Orajekwe recruited one Chinwe Nnagbo who read economics and not also living with sickle cell disease but runs her NGO (Chiemma foundation), to become a prominent member of the sickle cell “intelligentsia,” as the commissioner called them in the video. No section of the sickle cell law has provisions accommodating NGO’s. But the said Chinwe and another imposter by name Ifunanya Nwanadile an acclaimed education political scientist who fraudulently borrowed our uniform to as APLSCD member which is absolutely false and she also ran a private NGO’s ( Faithmicheal Smile Foundation) pleading that we should accommodate her NGO, not exactly sure is she is living with SCD otherwise they can submit themselves to genotype test for proofs, both were featured prominently in the said intelligentsia committee.
We wonder what this is, if not a well knitted ploy to embezzle sickle cell funds and sabotage the sole objective and purpose of sickle cell law.
The relationship existing between the association and the commissioner for women and children affairs was severed after Amaka Arinze Oko played her Ozubulu connection because she and Mezue are from same
town thereby denying sickle cell home every welfare support from the women and Children Affairs Ministry ever since sickle cell home was commissioned till date.
This mindless politics has continued to endanger the lives of children living with sickle cell disease who are wanting only respite from those appointed to ensure their survival.
The association hopefully appeal for your intervention in the following.
- Prevailing on the commissioner for health to allow a representative of popular choice to be nominated into the sickle cell monitoring committee, this is very important and dear to us because our fate would be decided by the committee.
- To see that our rights should not be denied us by the ministry of health, we have been a neglected segment of the society and that must change.
- Pressure for the immediate reimbursement of funds borrowed by the association to organize the sickle cell training exercise.
Anambra State should be greater than anyone, we can not allow ourselves to trudge on the path of wastage and financial improprieties.
Your Sincerely.
Aisha Edward Maduagwu.
National Coordinator
07014152622
CC. Speaker,
ANSHA.
CC. Clerk.
CC. Chairman,
Health Committee
ANSHA.
