Sequel to the just observed World Sickle Cell day on June 19,
2015, The Moral Crusader,Aisha Maureen alongside her pack of Association of
Sickle Cell Patients visited the Anambra State Commissioner for Health, Mr Joe
Akabuike on June 23rd
Following are excerpts of an exclusive
interview with this enigma of a lady as she shares her experiences and some
insights into the Nigerian sickle cell situation.
Tell us about this sickle cell Organization. When was it
started and how has it been running.
The organization is called Association of People Living with
Sickle-cell Anemia. We appealed to the
Honorable Commissioner for Health to be our patron given that he is the eye of
the government.
I have been an
activist on sickle cell related issues, sickle cell challenged people. I’m an
image maker too. Privately, I’m a media consultant. I render my consultancy
service to cooperate entities and individuals. Recently I have been on the fore
front of the fight against the sickle cell scourge. We just observed the world
sickle cell day. Strangely, that day this year was a very unusual day. Unlike
business as usual; People normally go that day to celebrate, bake cakes,
rejoice, raise funds, on behalf of and celebrate those that have died
mysteriously and unjustly, I consider very ill and wicked, happening in this
our very society.
World sickle cell day is a day we mark to remember those of
us living with sickle cell diseases. And try to look for a way to help the
researchers that will help those living with sickle cell challenges. And, of course,
look into their welfare and see how we can ameliorate the outbreak of sickle
cell procreation in the country, and in fact the whole of black Africa. This
particular year’s World Sickle Cell Day in Anambra was marked by the
Association of Sickle Cell People in a special way (we have decided to abstain
ourselves from any nomenclature that might denote NGO. I used to have one but I
don’t like referring to it as an NGO – just organization). This is an
association for those living with sickle
cell. If you are not a sickler, you have no business in that association.
Parents of sickle cell patients should set up their own. Now we want to be very
strict to screen the people that have been penetrating into this association,
so that people will not use the disguise of ‘I am a brother, or a sister’, and
enter and eat us. Someone once gave me the adage that what kills a fish is
inside a fish. So, we are really on an inhouse retreat. We are on the course of
sensitizing ourselves; telling ourselves the home truth which is very strong and
bitter. The biggest challenge we have is
some of us who have decided to relegate themselves to self pity and who decided
that they are going to wait until thy kingdom and those who have decided to
keep punishing their parents; take undue advantage of the fact that they have
the challenge to make their parents pay the die-hard price of becoming their
slave until they die. This is not so good. I have recently received some
complaints of some patients that have threatened to make sure they frustrate
their parents until they die, having given birth to them. Sometimes, you don’t
blame them. Yes, it is true that out of ignorance, some of them make these
mistakes. We forgive them. But, the people that are unforgivable are the
nowadays’ couple that even get married online – facebook marriage, twitter
marriage, whatsapp marriage. I think we need to call on well-meaning Nigerians
and all these online people to help us sensitize that, this relationship they
match-make online, they should as well help us to sensitize on genetics and the
relationship about the group cross-matching and the compatibility of your
genes. If they help us do that, I want to believe that those online marriages
are posing a serious threat too. When somebody has spent a year dating one
online, to think of the money you wasted and the time you spent, you’ll just
want to continue. Please, online marriages and relationships should be
sensitized and talked to about sickle cell challenges. Now these are the people
that are posing a threat to us and bringing us a new form of agony.
And so now, we went on a protest on the 19th. Some
of you might have heard me on NTA, ABS, and of course other media and channels
and links – ostareze.com, premium times. We went on registering our
displeasure. We didn’t eat that day. Some people were even calling us to give
us money, which we refused. We don’t need it. If you must give me money, don’t
give me because you feel pity for me that I have sickle cell, give me because
you want to assist me in one job or the other, or you want to help me to
achieve this. But this idea of, ‘is this NGO, i'll give you money,’ i'll rather
feel insulted. I will not like that. I’m going to reject it, and I will spite
you there out rightly. So, we went on protest, while some impostors were over
there in Abuja collecting money. They collected some huge sums that were kindly
donated by the first lady, Mrs Aisha Buhari and Mrs Osibanjo. The same function
they attended, sickle cell patients were made to pay 10,000 naira to gain
entrance to that venue where they had the world sickle cell day. Can you beat
that? Now, I’d like to call on the president of the nation, ‘if the wife of the
president have that kind of milk of kindness to salvage people like us, you can
imagine the extent people will go to save us, yet some other people will double
their effort to frustrate it.
While we were here in Anambra mourning – we lost about 50
members recently in Anambra state alone. We are not talking about other states.
I want to take a general record of what happened that day, and thank all
well-meaning Nigerians who are now paying heed to the clarion calls and who are
being sensitive to what we are going through. I want to particularly thank
Senator Sam Egwu. When we reached him, he sympathized with us and assured us
that something will be done – Godwilling. That word alone gave me confidence. I
have sent the good news to others. That word alone has made some of us who had
hitherto lost hope to believe again. In fact, yesterday when we went to pay a
familiarization visit to the Honourable Commissioner for Health, Mr Joe
Akabuike, we were about to take photographs, do you know that some of us ran
away saying that they do not want to take photographs again. Reason is that it
could possibly bring them another stage of stigmatization, because they hadn’t
seen the fruit from the government and NGO promises. They rather create more
pains for them. I felt bad but I had to respect their wish and only a few of us
who were willing to take the picture did.
The way the commissioner for health welcomed us is so
encouraging. In fact, I want to urge all south eastern state governors to
borrow a leaf from governor Obiano. He just started the other day but I don’t
know any other governor who can beat him in human related issues resolutions.
All these other governors that have high CVs of 2nd tenure and 4th
tenure have to show for it. Im sure some of them left huge sums of money and
have not paid salaries. I keep asking myself whenever I hear of all those
trumpet blowing of government’s achievements on the media, ‘don’t the media
people see all these quick practices by those in the positions of power or is
it until they leave we start hearing of empty treasury and suchlike?’ honestly
speaking, I want to thank the wife of the president for what she gave to the
sickle cell cause, even though she had given to the fraudulent group. I pray
that because she had taken this bold step, God will see her through and will
ensure that that money she had donated will get to sickle cell challenged
people. I want to promise those NGO people that have collected that money, if
they fail to justify the use of that money, most of us have volunteered to drag
them to court. We are going to seek a court redress without any moment’s
hesitation. We won’t waste time; if for nothing, for the sake of those people
that have died just like that. They should not think that they can just spend
the money. I also want to appeal to Senator Ben Bruce, who is a very good
orator and I have followed his speeches both on the media and online. I get
impressed. But I want to draw his attention to the fact that people use his
platform, Silverbird Group, to beg for fund for sickle cell group, whereas, I
haven’t heard that Silverbird Group have employed any person living with sickle-cell
challenge in their own contribution. I do not like that and I would like them to
look into such broadcasts and stop them. They are stigmatizing us through that
means. They are spiting us on the face. I do not want to see that again. On
seeing that again, I will ensure that we will seek redress in court. All those
begging break some of us down psychologically. After looking at such things,
you find out that this country doesn’t even consider you as anything. They just
see you as a nobody; a beggar. We don’t like that. If this country cannot
assist us, they should hold their peace. But they should not go about saying
they are raising funds to help sickle-cell patients and yet sickle-cell
patients don’t feel the impact of all the billions people give those fraudsters
for them. Even if we are disables, which I am convinced we are not, people
should desist from going about begging for money on our behalf. People should rather
advocate for subsidized medical attention for us. Let all these NGOs channel
their effort to the Chief Medical Directors and hospital management, to beg
them to reduce our consultancy fee and other bills. By my personal opinion, I
think that I should be entitled to cheap National Health Insurance. Hence the
government have not been able to make a law to curb generation of sickle-celled
babied or sanction those who have been blinded by their love that they go ahead
to produce children that are carriers. I think the country should owe me is an
NHIS ID card.
People should pay less attention to NGOs that are so
money-oriented. If you asre campaigning for cancer cause, you must be a cancer
patient to lead the course, let your consultants and doctors support you so
that when you are medically down, they will know how to help you out. Whoever
does not suffer from any disease condition; be it diabetes, cancer or
sickle-cell, should not lead the cause! The more the international donors are
sending money, the worse the case becomes. Look at what happened during the
Ebola scourge. The type of amount chunk into Ebola within the shortest period
marveled me. I began to wonder how far this thing spread. So, I don’t know who
is fooling who in this country. So, I want to draw the attention of the
government. If they have not been sensitive to this issue, they should now
realize it now, because people are being sentenced to suicide. We have a lot of
cases of sickle-cell patients that are heavy drug-addicts. It is not by their
own making but as a result of the drugs administered to us in the hospital.
Just yesterday (23rd June), I was reporting that to the honorable
commissioner for health. I was making a special appeal to him knowing that he
would understand what im saying given his medical orientation. There are
certain drugs they give to us when we are in excruciating pain and those drugs
are dependant. If some of these youth corps members or intern students would
just administer the drug on you regularly so you don’t have pain and disturb
their core duty, you are bound to become an addict. Some will start to steal
and tell lies just to get money to take some of those drugs.
Can you name some of those drug?
They are popular drugs. We have Pentazosyne and Fortwyn. At
some point, those sickle cell patients become addicted to it. However, that
drug is the only life saver of sickle-cell patients.but a situation whereby the
hardship and the harsh economy of the country will relegate the patient to the
worst state, he would have no other choice but to even go and take it
voluntarily. If you are gainfully employed and you know you are going to report
at your place of work, you won’t want to have any business with any drug. But a
situation whereby you don’t have any job, you are considered a liability in the
family and you are not married, have no children, even where you have children,
during the time of child bearing, you have a lot of complications. And even
after that, you may no longer be strong enough to raise those children. At this
point, I call on those who see to the concern of the feminine group to look
into the female sickle-cell patients who are the hardest hit.
Love may be blind at the initial stage for couples who are
AS, but as soon as they give birth to their first sickle cell baby, love will
put on eye drop and start seeing clearly. Depression, frustration sets in and
some of us resort to drug addiction. Do you know that you hardly find any
sickle cell patient that knows about a psychologist? The biggest challenge
sickle cell patients go through is psychological. If you are telling a sickle
cell patient in the secondary school about a psychologist, he will be like,
‘what are you talking about is it not a shame? All those who graduate every
year from our universities majoring in psychology, where are they and what are
they doing? They don’t need to look for jobs. Let them look out for sickle cell
patients and manage them professionally. I’m sure they will be gainfully
employed thereby, because those who are sickle-cell patients want to be cared
for. But, everybody is looking for is government work. We are not being
sincere. What I’m not going to allow is that in this particular generation,
somebody is going to worsen my situation and make my children regret that they
had a mother that suffered such thing. I will not let anybody to that as long
as I am alive. I am going to take on all these fraudulent NGOs one after the
other. Because these people commit murder indirectly. I had three weeks health crisis after
encountering Professor Akiyanju on Silverbird with his style of begging for
money in the name of sickle cell patients. I have not met the man but I made
every effort to get his number online because I wanted to ask him some direct
questions. His people online just told me to calm down that they will find how they can work with
me. They hoarded his number. That made me realize that this man Akiyanju is a
total fraud. It is either the government have not noticed it or that the
government is aware and would not do anything about it. I had a serious
argument with someone who told me that, ‘well, the NGOs keep existing because
when the government wants to do something, they partner with the NGOs.’ What about the recognized association of
those people. What is the essence of this thing called union. TUC – what is it all
about? So, I’m saying that Anambra state government should take a bold step to
make our visit to the commissioner for health a fruitful one indeed.
Can we talk about the visit?
Yes, we went on a courtesy visit to the Anambra State
Honourable Commissioner for Health,Joe Akabuike, yesterday, June 23, 2015. We
looked at the aftermaths of the World Sickle Cell day and we registered our
displeasure. We told him about our challenges. We spoke about people who really
need some urgent medical assistance. We emphasized on the need for the state to
have a sickle cell centre, if really we are being sincere to ourselves. He
acknowledged the fact that, yes, our visit is quite timely. That the state had
hitherto concentrated attention on other ill healths and therefore our visit
was quite timely. That he was glad that we were able to gather ourselves
together to come. That in those days, doctors used to go out to look for them,
but now, we have decided to wake up to reality to come. He expressed his joy .
he is a medical doctor – a gynaecolost and was therefore not a novice to what
we were talking about. We equally brought to his attention the case of drug
addiction amongst us. We raised concern over some pharmacists who should assist
us though they make a lot of money from them but they should check the abuse. We
also appealed that the NGOs that have been using us, rubbishing us be stopped. We also pointed out how the
medical doctors can help us too. We challenged him too; that south-west seemed
to be thriving in the NGO racketing of sickle cell, taking advantage of the
fact that we don’t have even a centre. People feel that they use them to now
make money. Some people go to the hospitals, collect our blood samples and go
about making a noise about researching on it, racking in money, yet no
result. And so, the honourable
commissioner welcomed us, thanked us and assured us that this government had
never relented in human related issues. I saw with him that indeed the
government was up and doing giving the maximum attention some other health
issues are being attended to. Who knows the magic Mr Akabuike have been
performing in his office. He assured us that he will do everything possible to
reach the government and work out the
modalities that is going to visit our problem. And assured us that gone are
those days people will die of sickle cell and they will say you are an abiku or ogbanje. He cited cases of his colleagues -professors in medicine
living with sickle-cell challenges and who died in their seventies. He informed
us that, our condition notwithstanding, we shall still live for as long as God
wants us to. He assured us that this government will not waste any time to
ensure that we have a sense of belonging and appreciate the fact that we are
part of the society. He at the same time adviced that the entire society to
please, in the memory of their lost ones, to check their genotypes. And he
called on all the sickle cell patients to come out. Those of us that are hiding
should know that the commissioner is interested to have our roll-call, no
matter how bad your condition is. If something is not done, you can hold him
responsible. He said he needs this roll
call so that none of us is left out. I therefore call on Ndi Anambra to avail
themselves of this golden opportunity. It has never happened. It might have
happened in other places as racketeering and money making affair but this particulalr
sincere approach has never happened before. Nevertheless, I’m sure that Ebonyi
state people are going to do the same. I want to urge our people not to allow
themselves to be relegated to the background or suppressed. No! I don’t want us
to be leaving responsibilities to others as that has been the architect of our
problem, ‘O, I can’t do this, let me send my mother, let me send my father.’ It
is not done. I equally want to sound a note of warning to anybody who is living
with sickle-cell challenges, if you know you are a drug-addict, you need
assistance because this government will not be able to give any job if you are
still on drug. So, come out en masse and identify with your problem and resolve
it once and for all. Those of us in hiding, come out and make a change. I am
proud that today, history is re-writing itself and there is change. I want to
inform those who are planning to sabotage the plans the government have for
us, that they will have us to contend
with – either alive or dead. They should jettison that plan of trying to put in
some names of people who are not sickle cell patients. Some people have even
approached me secretly to add their names as sicklers because they need job. It
is to tell you the level of corruption in this country. By this act, I got
convince that those NGOs in lagos are truly engaged in sharp practices. So, if
you know that you want to fraudulently enter the association as a sickler when
you are not, I am sorry for you because we will make sure we fish you out and use
you set an example.
Lastly, those of you who did not have the opportunity to go
to school because of the stigmatization, I want to announce to you now that
there is a new hope. The office of the wife of the governor has advertised
vocational educational training for all of you. It is up to you now to come out
to where we meet to indicate the one you want to learn. Osodieme has said,
indicate the one of your choice and she will ensure you get the necessary
training you need. It is a great opportunity. I don’t want us to lose it or
abuse it. We had better come out now and avail ourselves of it. As well, I
understand that this government is investing in poultry farming and other forms
of agriculture. Please, we wish that the government put us to test and invest
in us and we shall show the world that we are exceptional people. I dare the
governor, Dr Willie Obiano to invest in us and place healthy supervisors over
us and we shall outstandingly contribute to the revenue generated in this
state.
General Appreciations
I want to use this opportunity to appreciate the media people
who have been assisting us in letting our voice be heard, even when we do not
have much money to offer; premiumtimes.com, ostareze.com, 247ureport.com,
odogwublog.com, The Sun Newspaper, Orientdaily newspaper, Nigerain Television
Authority, Awka, to mention but a few. I know that with time, you shall be
officially engaged. May God reward you. Be rest assured that you are helping to
sanitize the society in your own way.
I would want to appreciate post mortem the uncelebrated
president of sickle cell club, Dr Chidiebere Ikeakor (an ophthalmologist) who
died last year. She went as far as Ghana and Gambia to sensitize people on
Sickle cell Anemia. If Adedevu would be immortalized, I’m advocating that the
least the government can do for her is to immortalize her. I have resolved to
finish what she started.
I want to appreciate Tinubu’s family who positively responded
to the hurt of having a sickle-cell child who died prematurely. But I appeal
that they deal with us directly. Non-governmental Organizations are frustrating
their efforts.
I would also like to appreciate, in a special way, honorable
Chukwuma Charles Ezeani – the honorable member representing Anaocha 2
constituency. He is a man I must say that Nigerians should encourage and
support. I am personally campaigning for him to ensure that his bill gets
passed. He has been so supportive and he mobilized us and ensured that we aired
our views on World Sickle Cell day and lots of us stopped crying. I encourage
other young entrepreneurs to borrow a leaf from him. I want to assure him that
the whole sickle cell group is giving him support.
Reverend Father Cosmas Ebebe is another exemplary priest of
the Catholic Communion who I cannot appreciate enough for his angelic
assistance towards us – I in particular. During my periods of crisis, he was
always available, regardless of the time of day, to render selfless support and
assistance. He provided a bus for us on that World Sickle Cell Day. Clergy
people should learn this and stop extorting money from us in the name of
miracles. This man of God believes in miracle but he knows that the first
miracle is to wake up by 3 am to attend to a sick person.
Warning
Our case demands some level of urgency. Some of our
colleagues who are worst hit are becoming suicidal. Some parents have come to
me complaining that their children have threatened to kill them. Some could be
easy preys in the hands of suicide bombers recruitment agencies. A parent came
to me crying that the sickle cell patient son threatened that he would kill
them before he dies. I assured her we are not like that and told her to arrest
the boy the next time he repeats that, because he is damaging our image. But
let all and sundry see the precarious nature of the situation and respond fast
and aright.
