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| Aisha Edward. Coordinator APLSCD |
1. A group of people I call syndicate converged at ABUJA to run a fund raising in the name of sickle cell, prominent among them is Professor Akiyanju. President Buhari who donated some multiple million naira to the foundation. I sympathize with you and your lovely wife and wish to inform you that the money did not leave the table of the foundation for even your hometown.
2. I was visited by some patients when I had AVN on my waist in the hospital. They registered their displeasure on the way they were being treated. They said they were shocked at the high level of care the military hospital I was in was giving sickle cell patients. I asked them about the Sickle Cell Foundation and they said they had never gotten any assistance from the foundation. I wondered why a foundation that receives worldwide assistance cannot help sickle cell patients. I must use this opportunity to thank the founder of SICKREP, South East, Professor Dr. Ibegbunam who patients are closer to. He said he had done his best which included begging for assistance from people to help the patients when a foundation like Sickle Cell Foundation, Nigeria has no South East presence.
3. On further probe, I discovered that there are some scientists who claim they are part of researches held by Prof Akiyanju. My question is what is the outcome of these researches over the years? What is the foundation doing about drug dependency problem among sickle cell patients. Does it mean that these monies pumped into the foundation is not enough to make a noticeable impact in the lives of sickle cell patients in Nigeria?
4. Before my dear president, Dr. Chidiebere Ikeakor, died, she said that if a sickle cell bill is passed, she would die a happy death. She used her meagre salary to run to and fro ABUJA fighting for a bill to be passed so that sickle cell patients can have an easier life and sickle babies' production stopped. She dreamt that such a bill will see the light of day. Does it mean that the foundation cannot effect the passage of this bill? What justifies the suffix Nigeria attached to their name?
5. It is demeaning and embarrassing when I enter airlines and I see leaflets saying 'donate for sickle cell patients', as if we are helpless people. My dear Professor Akiyanju, why can't you use the publicity for sensitizing people on the dangers of carrier marriages? How has your foundation affected the lives of sickle cell patients or sickle cell?
6. It is a known fact that Sickle cell patients, though frail physically, make up for it through exceptional mental sagacity. How many sickle cell patients has your foundation given scholarship from the billions of dollars being pumped into your foundation?
Prof. Olu Akiyanju
Prof. Olu Akiyanju
7. I want to call the attention of Senator Ben Bruce and borrow his word, 'I just want to make common sense.' My dear senator, I appreciate all your good works but I think it is better to give free airtime on Raypower and Silver bird TV for creating awareness on how to maintain the disorder and stop its proliferation, than to use these media for begging for money for an obviously dubious foundation, Sickle Cell Foundation. Sickle cell patients would also better appreciate it if they are given employment opportunity in your establishment
8. May I also appreciate the MTN Nigeria. I understand that your company donates 1 minute call cost of every call to Sickle Cell foundation via your cooperate social responsibility program. Your good intentions are quite appreciated but know ye that the so called sickle cell foundation, Nigeria does not represent the interest of sickle cell but a front used by greedy and selfish individuals to amass wealth for themselves. Rather, provide employment opportunities for sickle cell patients. We sickle cell patients will appreciate this more and you would have really affected the lives of sickle cell patients.
9. May i also thank the Medical Directors for the effort they have been making on our behalf. I also pray you look into the way sickle cell patient are being treated when they have crisis. I understand that they are being induced to get addicted. May i in the same vein appreciate the anambra state commisioner for health, Dr Joe Akabuike, who did not mind i am not an indigene kept his door open for the Association of People living with sickle cell disorder. I implore other state commissioners for health to take a cue from him. I also call on the Pharmaceutical council of Nigeria to look into subsidizing drugs for sickle cell patients. I am pissed at the idea of telling the public that free drugs are given to patients when it is just folic acid that does not cost up to 100 naira handed out to them. I also request that you look into the opiate drugs we patients are getting addicted to.
10. May I also ask other states of the federation why they are yet to pass sickle cell bills as done by Anambra state. It is high time this is done if we must be sincere with ourselves in this fight against sickle cell anemia. May I thank the Anambra state governor and the wife, Chief Mrs Ebelechukwu Obiano through CAFE, for promising to give job opportunity to sickle cell patients.
11. I appreciate the clergy for their prayers and prophecies and want to appeal to their conscience to desist from taking advantage of sickle cell patients' condition to rip them off; requesting for seed of faith so that their blood group can be changed. I request as a matter of urgency that genotype testing machines be set up in all your marriage counselling rooms and the people informed on the wickedness of carrier marriages.
12. The NDLEA should understand that we should be working together, given the fact that we need you well equipped to support us in our addiction prone medical condition. I also use this opportunity to call on the Federal Government to do what they should by equipping the NDLEA with the necessary human and physical resources so that those addicts among us can find solace for rehabilitation. The federal government should also provide sickle cell patients with NHIS identity cards, bearing in mind that we are not the architect of our condition.
13. To the South Eastern senators, I ask that you partner with the Association of People living with Sickle cell foundation. I understand that you were the highest donors to that fraudulent Sickle cell foundation. I implore you to come home and you can set up your own foundation. What we need is job opportunities and if you can provide us with mobility we shall be grateful.
14. To my dear Prof. Akiyanju, repent for the kingdom of God is here. Amend your ways and stop deceiving the people. You are old and close to your grave. The judgment might start now. Don't push us too far.
15. To the family members of sickle cell patients, it is high time you amended your ways. You can start an association of your own and stop using us to beg for money.
16. To the media, you are our only weapon as we have not the physical strength nor financial strength to fight our cause. We implore that you continue to help us with propagating this message that the world may know the truth about sickle cell.
17 To all sickle cell patients, be courageous and desist from self pity. You have been battling with pain since you were born. Keep your head up and keep up with the combat.
18. To those philanthropic Nigerians who may have been touched by our plight and may wish to help, just as has Chief Sylvester Nwobu Alor, the catholic and the Anglican bishops who are at the forefront of the fight ,you can reach us at Association of People Living with Sickle cell disorder. Road 1, Plot 8, Udoka Housing Estate, Awka. 08033222007, or 08113482317 or 08053222038. Anambra state broadcasting service has decided to carry out a walk in honour of Sickle Cell Anemia. You are enjoined to join us come September 12, 2015.
My time is running out and the only thing I owe my nation is patriotic bitter truth. I don't care if anybody feels offended by my opinion. I have understood that life and death lies in God's hands. You should stop blackmailing us with our weaknesses. If we really want change, the change should involve people living with Sickle Cell Disorder
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