For four years now, the sickle cell bill initiated by the founder and president of Association of People Living With Sickle Cell Disorder has been generating a lot of controversy. The Anambra State House of Assembly is yet to pass the bill. O’star Eze spoke with Aisha Edward, the president of APLSCD in an exclusive interview where she discussed the bill and related issues
It also arouses our curiousity why our bill has not been passed. I congratulate people with disability on the success of their bill. I felt really sorry for them when I realized that their bill was not yet passed. I think the assembly members should have been merciful enough to know that it is about time they gave our bill priority. I remember the last time we went for public hearing, I mentioned in my speech that when the government gave us empowerment. I was on a sick bed and I sent my members. Of course, sickle cell is a condition that comes with multifaceted problems and disability of all kinds. So, I sent my members and lo, they were asked three crazy questions; whether they were widows; whether they have HIV; and whether they were born disabled. These members of mine became confused. I do not know if there is any disability that is worse than the one of the blood. It is the worst kind of disability there is. That was how they denied my children that opportunity. Many a times some injustices are meted out and we are reluctant to cry out. People are so mean that they politicize every decent request. We have died in silence for four years. We have been working together with the people with disability until the day The deputy protocol and a media aide to the governor called us Beggars before our Chaplain on official visit. Again SA to Governor fails to attend our activities especially World Sickle Cell Day, Since that time we lost touch with them. I currently have a case of a person living with sickle cell who served in the state owned teaching hospital eight months without any payment or stipends. He was supposed to be retained but he was not so I reached out to one honourable member who raised concern and asked me to call on the SA to the governor on disability which I did. Maybe, there are limitations to what the man can do within his office.
The association has been shouldering the welfare of so many children whose parents died leaving them behind as sickle cell patients. I think our biggest problem is the rich who go ahead to get involved in genotype incompatible marriages feeling that their money can carry them all through. At the end where the money cannot carry them, they start to hide their sickle cell children. A certain State governor has children with sickle cell who even died even in self denial influenced by the parents. Today we are even killed by our own family members due to harsh economy situations in Nigeria today. We celebrate with disability people because it gives me hope that one day ours will see the light of day.
What are some elements in the bill that would better the lot of members of the association?
The present governor made a pronouncement that the state will pass a law that anyone who engages in incompatible marriage will have to face the law. He also said he is going to build us three hospitals in the three Senatorial zones of the state. The hospital bills are so high ranging between N200,000 to N250,000. The least of our bill every crisis episode is 90 thousand naira. Crisis occurs in every sickle cell patient at least four times a year. I suffer my episodes during menstrual or ovulatory period. The last hospital I was admitted to manage my crisis was a missionary hospital and the charges were still on the high side. This is part of what the bill covers; government intervention to ensure subsidized blood bank, drugs and health management services. There is also the issue of empowerment. It is difficult to train up a sickle cell patient due to the hiccups in their health condition which impinges on their frequency to school. One of the things God blessed us with is high intelligence. If we manage to graduate from school, the government does not provide us with jobs. So many of my members are graduates and they do not have jobs. Except for some whose family members are affluent who would engage them in their business. The bill made provision for skill acquisition for those of us who cannot get through with school so they can learn a skill and be self employed. I rented a place two years ago but did not have the money to equip it; a skill acquisition centre where members of the association can learn skills. I have trained quite a good number in other skill acquisition centres; Holy Rosary Convent, Igboukwu and St John Vocational Centre at Neni. But the money and the machine to start with remains a Problem. The bill laid emphasis on sensitization; going to School to educate students on genotype compatibility. To eradicate sickle cell is paramount in our mind and it is all about education and media. Media is another body that is missing out. Professor Stella Okunna made a strong case for the media. Media ought to have a big budget in the bill. Free education is also advocated for in the sickle cell bill. Examination stress and tension usually triggers crisis episodes. Another issue that is addressed is the issue of infidelity in marriage as a result of the fact that a good number of sickle cell patients that are male are infertile because of the complications with the disorder. Because of that their wives cheat on them and treat them like they are powerless. Then Those men that marry sickle cell Patients as their wives treat them like they are doing them a favour. There is this pressure from the home of the sickle cell female patients that they are liabilities. These are the things that trigger drug addiction and depression. The pharmacists that sell drugs to us without prescription are also culprits. The sickle cell patient could also resort to suicide if there is a nervous breakdown. There is also the issue of churches and alternative health practitioners that take advantage of our condition to swindle us. These are the areas that the legal aspect of the bill will handle. Let those who claim they heal through stem cell should produce one of their family members that have been cured that way. Many people that introduce new drugs would use our members as guinea pig to test and market the drugs. That should also Stop.
Some critics would be of the view that your association should align with Joint National Association of Persons Living With Disability. This is given that you have even referred to Sickle Cell Disorder as the worst kind of disability. How to you react to this?
They are very correct. You see, you do not know anything until you come closer. Right now, all our members need to go for psychological rehabilitation because we do not see the world the way others see it. Let the government start from that one. That includes myself because of several disappointment and inconsistency from the government . We have been so traumatized that even when people say this is how something is, we do not understand it that way. Yes, we should liaise with the JONAPWD. I was thinking that the SSA to the governor on disability should have made us one of his Concerns. I am not too good in visiting government offices and the one I did gave me a psychological scar. The SA on disability directed us to the Mr Primus Odili’s Office but on getting there, one Mrs Ngozi Osy Agbata, who was the deputy protocol to the Governor and Emeka Odionu an SA to Governor on Social media came out to call us beggars during campaign period. So, the government should find a way to reach out to us if they really care about us. However, House of Assembly members advised the SA to the Governor on disability to always carry us along with all necessary welfare packages from the government. We had also written to Governor Willie Obiano requesting for a bus that would help in conveying our members who usually suffer from leg ulcer around the state and beyond in the course of carrying out our advocacies and campaigns.
Your association has been around for four years and counting. Can you tell us some key things the association has addressed that have helped to improve the lot of the persons living with disability and generate revenue for the government?
That is empowerment. What I do now is that I train my members and set them up as the donations come from well meaning individuals. My thanks goes to all the churches. They gave us chaplains who are like our fathers, our psychologists and our assistant. They also give us jobs by allowing us sell our books in their schools and parishes. They also introduce us to some key reliable philanthropists who help us without trying to take advantage of us or give us stress. Our chaplain gives us food every festive period. The bishop also gives us food. Recently Ifeanyi Ubah gave us cartons of indomie, besides a car and cash donations. What we have done is to create our own skill acquisition centres and implore for support. I am appealing to all our chaplains to please give us slots in sewing school uniforms for school pupils and students. There are those that barb hair and those that are computer literate. I have written to the governor through several quarters asking that we be given opportunity to educate others so they can stop producing people like us. We have also built a hospital for Sickle Cell patients in Ukpo.
Concerning projects, I dwell more on school fees and hospital bills of sickle cell patients. We pay hospital bills for members whose cases are confirmed cases of neglect. Our major investment is in production of educational books that teach about the condition and its management. We made supply of books to some churches and they swindled us.
Some persons living with Sickle Cell Anemia are of the view that fighting against incompatible marriages is an impediment on marrying for love. What is your take?
Any person undermining the need for the sickle cell disorder to be eradicated through promotion of genotype compatible marriage should have his head examined. There is no amount of wealth that can equate with the pain felt by sickle cell patients. The pain in the bone is like having your flesh sawed off with you being fully awake. It is excruciating and I do not wish it on my worst enemy.