Mrs Aisha Edward-Maduagwu is the national coordinator, Association of People Living with Sickle Cell Disorder (APLSCD), a pressure group. In this interview with OKECHUKWU ONUEGBU, she reiterates the need for an enabling law to help sickle cell patients.
Who are APLSCD?
It is the Association of People Living Sickle Cell Disorder, the only pressure group in the forefront of total elimination of Sickle Cell anemia in Nigeria. I call it the only pressure group advocating for Sickle Cell Disease (SCD) carriers because it is founded by core sickle cell carriers. The society that produces us out of their marriage mistake is still suppressing and oppressing us. We are discriminated against and trampled upon by even the churches that wedded our parents. That is why we came together as an association to advance our cause. We have reputable clergies as board members with functional branches in Abia, Enugu and Ebonyi states while making inroads into other states. We have 265 registered members and six zonal coordinators in Anambra state. What we do in APLSCD is to provide free medical services to our members and other welfare packages like food, first aid boxes, education scholarship, employment and others. In Anambra state, we have held advocacy and sensitisation campaigns across 21 local government areas of the state. We have published several books on sickle cell, and we have also organised free monthly medical services for our members with the help of our medical consultants. November’s edition was held on 26th by medical professionals from Nnamdi Azikiwe University Teaching Hospital (NAUTH) Nnewi under H3 Africa Foundation, a United State government sponsored project. As a result of our relentless campaign, in 2019, the Anambra state Sickle Cell Disease (Control and Eradication Law) was passed into law by the sixth assembly. On June 19, 2020 Governor Willie Obiano signed it into law, making Anambra the first state in Nigeria to legislate on SCD.
What is Anambra State Sickle Cell Law all about?
The law seeks to eliminate the spread of SCD. It provides among other things that a Sickle Cell Monitoring Committee shall be established to ensure that intending couples undergo screening to ascertain their genetic compatibility before payment of dowry. They are to set up similar committees at the local government areas and further step it down by setting up a taskforce in 179 communities in the state. The taskforce shall ensure compliance of this law. They work with APLSCD, president-generals of town unions and traditional rulers. By this law, if you have not gone for the test and obtained a certificate clarifying your genetic status, you cannot marry even if you got impregnated before the marriage plan. In schools, students and pupils are required to submit their genotype clearance certificate before gaining admission so that you will know your status early enough and how to curtail its spread. There is also a provision for sensitisation and training of church leaders that will assist in carrying out these projects. It also legitimates against discrimination of sickle cell carriers in any form or place and provides for automatic employment of qualified sickle cell members in government and private institutions of their choice. We are also entitled to skills acquisition centres, establishment of blood banks which is of utmost importance to our members who live by daily or periodic blood transfusion. There are so many things in the law that make it possible for sickle cell genes to be wiped off while enabling the already carriers to survive and enjoy their lives like everyone. We don’t need pity. We need freedom to showcase our talents, work or coexist with others.
How operational is the law presently?
Well, it is not yet operational. They haven’t established blood banks. This has led to the loss of nine of our members. We have equally been exploited by different medical institutions because of it. For instance, one of our members was detained in a hospital during the COVID-19 for inability to pay about N500,000.
There was one charged N1.7 million. The Anambra State Health Insurance Agency (ASHIA) cards issued to us are discovered to be fake and unusable to date. We complained and they promised to fix it but nothing has been done. Also, the skills acquisition centres are not yet in place. Some of our members educated up to Masters Degree level in different disciplines are unemployed.
The N1.5 million Governor Obiano released purposely for educating about 200 catechists is yet to reach us. We were rather told to obtain loans while waiting for the fund. We obtained the loans, trained the catechist but yet to be refunded. What we are rather hearing from some political appointees is that the money did not reach us because of their fear that I won’t allow them to take 10%. They callously schemed us out during 21 LGA tours embarked by her Excellency, Mrs Ebelechukwu Obiano. She had included us as part of a team on the tour in order to sensitise people on the new law. We don’t know how some political jobbers removed us without her knowledge.
The sickle cell monitoring committee which is the engine block was inaugurated last week after we wrote a series of letters to the commissioner for health to set up the committee, unfortunately, what the commissioner set up is what I call a kangaroo committee because it was not properly constituted. Members of the committee as specified by the law are a representative of the association of people living with sickle cell, a haematologist, a psychiatrist, a chemical pathologist, a paediatrician, a clergyman, a member of Medical Laboratory of Nigeria, a member of Pharmaceutical Society of Nigeria, a staff of the state ministry of health, a legal practitioner and a representative of Anambra State Association of Town Union (ASATU), but the commissioner did not write to inform us of the date. He did not ask us to nominate a member nor include me who championed the cause till now. He even acknowledged in his speech at the event which has gone viral that I am the architect of sickle cell law in Anambra state.
This is the same ministry or government we have been working with to get this passed and assented to. So, what has gone wrong? No one among the committee members he inaugurated is a sickle cell carrier. Does it not contravene the law? How would people without the genetic condition know what we are passing through? ASPLSCD has many qualified people including those with M. Sc. in Microbiology to function effectively in the committee.
What do you suspect led to exclusion of your members from the committee?
I suspect there is something fishy they are hiding from us. I suspect that some people derive joy when they see us suffering. They don’t want my members to take part in the remuneration meant for members of the committee. But our intention is never to drag the remuneration with them. But what is wrong if our member partakes in it after our six years’ selfless services to get the law in existence? What we want is to be where decisions are taken for our sake. We are even supposed to chair the committee. We are the sufferers. We feel the pain. We are supposed to be allowed to nominate or recommend the members because we know our caregivers. We know the real medical consultants and other experts that can effectively function in the committee.
What action are you taking since this injustice was meted on your members?
We are not relenting. Immediately, we heard a rumour of the commissioner’s plan to inaugurate the committee, I sent him a text message. We wrote a petition to Governor Obiano, his wife and the speaker of the state assembly. We also met with the Catholic Bishop and Anglican Bishop that have been working with us. These prelates have been providing us with chaplains, palliatives, education scholarships, spiritual, physical and other moral supports. We are calling for reversal and reconstitution of the committee so that our members and only qualified experts shall be its members.
What other challenges does your association face and survival mechanism?
We don’t actually have problems with Governor Willie Obiano and his dear wife, Chief Ebelechukwu Obiano. The governor and his wife are supporting us but their political appointees are the problems. The political jobbers are politicising our activities. They have denied us direct access to the governor and his wife. If only the governor or his wife can hear from us directly, all these challenges would fizzle out. They are using the governor’s wife’s name to tell us lies and siphon what is meant for us. Before now, the political jobbers claimed that we are working for the former Governor Peter Obi and Mr Oseloka Obaze (former governorship candidate of PDP). For instance, when we requested for a bus, they lied to us that the governor won’t release it because we will use it to support the opposition. We invited the governor’s wife to the inauguration of our sickle cell home but she did not come. We were told that she wouldn’t come because some of our benefactors who are in the opposition would equally attend.
