NELSON EGWARE

Sickle cell disease is an inherited red blood cell disorder in which there are insufficient healthy red blood cells to carry oxygen throughout the body. There’s no cure for most people with sickle cell anaemia. But treatments can relieve pain and help prevent complications associated with the disease. Medical science however exists through bone marrow transplant to completely mitigate the effect of the scourge.

The disease predominates in sub-Saharan Africa, East Mediterranean areas, Middle East, and India. Nigeria, being the most populous black nation in the world, bears its greatest burden in sub-Saharan Africa. As one of the most prevalent disease especially in Nigeria, Sickle cell disease (SCD) is one of the most common genetic diseases worldwide.



In Nigeria, carrier prevalence is about 20 to 30% SCD affects about 2-3% of the Nigerian population of more than 160 million people.

According to Nwogoh et al, recent estimate from a large retrospective study in Benin City, South-South Nigeria revealed an SCD prevalence of 2.39% and a carrier rate of about 23%.

It is from this background that one understands the import of the huge interest shown by the wife of the Governor of Delta State and Founder of the 05 Initiative, Dame Edith Okowa in the fight against the scourge.

She has taken the fight against Sickle Cell in Delta a notch higher with the establishment of 13 Sickle Cell Clinics at Ughelli, Sapele, Oleh, Kwale, Eku, Patani, Koko, Otu-Jeremi, Agbor, Orerokpe, Issele-Uku and Umunede with a Referral Centre at the Asaba Specialist Hospital, Asaba.

Dame Okowa explained that the establishment of Sickle Cell Clinics in the state was part of 05 Initiative’s health programme which focuses on the effective management of occasional distress associated with the sickle cell hereditary disorder.


She stated that the mission of the 05 Initiative was in line with the Prosperity and Stronger Delta Agenda of the current administration, aimed at giving hope to the hopeless and transforming lives.

“The 05 Initiative has established five Sickle Cell Clinics in Agbor, Oleh, Sapele, Ughelli and Kwale. So far, we have recorded huge successes in all the centres where we already have committed genetic counselors who attend to patients on a daily basis. As part of our commitment to bringing succour to the poor in the society, the 05 Initiative has a goal to establish Sickle Cell Clinics in every town where there is a Central Hospital in Delta State. We also aim at having a Model Clinic in Asaba. It is a huge task, but with God on our side and contributions from well earning Deltans, we will achieve our goal.”

She commended Deltans for their contributions in the actualization of the sickle cell clinics in the state and called on parents, care givers and sufferers not to rest on their oars in the fight against the disease, but to come together to ensure improved advocacy and support at all times.

At the inauguration of the sickle cell clinic at the General Hospital, Orerokpe in October, 2017, Dame Okowa, who said the event was significant in the journey of the O5 Initiative as a result of the goodness of God, revealing that: “This is our Tenth Sickle Cell Clinic and the number TEN stands for the completion of a circle. So far, huge successes have been recorded in Agbor, Oleh, Sapele Ughelli, Kwale, Koko, Eku, Patani, Otu Jeremi with committed genetic counselors who attend to patients on daily basis. This is worth celebrating but there are more territories to conquer”.

The Delta First Lady lauded the 05 Initiative team for effectively educating and sensitizing members of the public against acts of stigmatization and misconceptions surrounding the sickle cell disorder.

While inspecting the medical equipment which include Haematology auto analyzer, Haemoglobin electro phoresis and Haematocrit centrifuge provided by the 05 Initiative, she said “It is my sincere hope that this facility will to a great extent alleviate the sufferings of our people and restore joy to my Survival and Success Children”

As the Director General of the 05 Initiative, Mrs. Oghenekevwe Agas said the 05 Initiative was passion driven, adding that the scheme was established to ensure that the survival rate of people with sickle cell disorder is higher, just as the equipment at the clinics were to help eradicate encumbrances faced in accessing health facilities. She appealed to men and women of goodwill to support the project in order to sustain the campaign to curb the prevalence of Sickle Cell disorder in the state.

In a goodwill message during the inauguration of 12th Sickle Cell Clinic at Umunede, in October 2018, the State Commissioner for Health, Dr. Mordi Ononye, represented by the Permanent Secretary in the ministry, Dr. Mini 0seji disclosed that a total of 2,388 sickle cell patients have been seen in ten of the eleven inaugurated clinics in 2018, adding that haemoglobin genotype has been determined for 3,575 persons in eight of the clinics among other services.

This passion for the survival of people with the Sickle Cell Disorder led to the establishment of the Sickle Cell Referral Centre, Asaba and as Dame Okowa said the centre was in fulfilment of her promise to build a world class sickle cell referral centre in the state to bring succour to carriers, adding that the 05 Initiative had earlier established 12 centres in other areas of the state. “With the addition of this centre, it brings to 13 the total number of sickle cell clinics established by the 05 Initiative in its relatively short history. The other 12 clinics are at Ughelli, Sapele, Oleh, Kwale, Eku, Patani, Koko, Otu-Jeremi, Agbor, Orerokpe, Issele-Uku and Umunede.

“Every one of these clinics is fitted with modern equipment, quality furniture, and manned by skilled and knowledgeable personnel because, as some of us here may be aware, sickle cell patients face peculiar health challenges, including episodes of pain, frequent infections, delayed growth and vision problems,” she said.

In a keynote address at the inauguration of the Referral Centre, Dr. (Mrs.) Annette Akinsete of the National Sickle Cell Centre, Lagos, said that, every year, at least 150,000 children are born with sickle cell disorder in Nigeria and around 100,000 die before they get to the prime of their lives. She said Nigeria should be at the forefront of the fight against the disease.

An orthopaedic surgeon, Professor Iwegbu, highlighted the latest breakthroughs in managing sickle cell disorder, urging carriers not to be discouraged, as the right intervention would address permanently the crises associated with the condition. The professor said sickle cell disorder was not a lost battle as it could be cured through bone marrow transplant.

Prof. Epiphany Azinge (SAN) on his part, scored 05 Initiative high in meeting its vision, stating that “Activities of 05 Initiative have blossomed tremendously. The scorecard is impressive, as 05 Initiative is giving hope to the hopeless. This sickle cell centre is the second of its kind in Nigeria and I congratulate and commend the founder of 05 initiative, Dame Okowa, for her commitment to leaving a legacy that will endure for all time.”

Some survivors of the dreaded disease recount their experiences and commended 05 Initiative’s gesture in fighting the disease, saying they were impressed by her passion to help people living with the disease.

Mrs. Bridget Ochuko Augustus, a 50-year-old mother of five, has already overcome her major health challenge in life. She is a carrier of the dreaded sickle cell disorder, one of the major irreversible conditions in the world.

But her experience is a declarative affirmation that the disorder is not a death sentence after all. Sharing her experience, Mrs. Augustus said she was diagnosed of sickle cell at the age of three, and her father died when she was 15.

According to her, with determination and adherence to guiding principles, she survived the trauma, attained education to the university level, and has had a stable marriage for over 21 years, with children.

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Mrs. Augustus spoke alongside other sickle cell carriers in Asaba, Delta State, during the inauguration of the Sickle Cell Referral Centre built by the 05 Initiative.

She said that “there is a lifestyle for sickle cell patients who want to stay healthy and alive. Sickle cell disorder is not a death sentence. As for me, in the past nine years I sleep regularly in a mosquito net. I eat natural food cooked by me and no opportunity for junk. I live happy at all times; and, above all, I hold my God closely as my only help, strength and healer”.

Mrs. Vera Atagbonna, a 68-year-old retired chief laboratory scientist, said she has been able to survive with the disorder. She said young people who have sickle cell should not despair, as there is a future for them. She encouraged young people to be open with their genotype status to ensure that only the right match with AA and AS/AA and AA can get married.

A judge of the state high court, Justice Timi Excel, who is also a sickle cell carrier, insisted that one could live with sickle cell and make meaning out of life. She advised parents to come to terms with the realities of the disorder, against the superstitions surrounding it.

The highlight of Dame Okowa’s passion in tackling Sickle Cell Order in the state was the inauguration of Newborn Screening equipment for the treatment of sickle cell in Delta State, donated by the 05 Initiative at the Specialist Hospital, Asaba. This puts Delta State as the first state in Nigeria to have a newborn and adult screening machine in one system under High Performance Liquid Chromatography, HPLC.

In her address, an elated Dame Okowa said “the inauguration of the newborn screening machine was a dream come true”, she commended Governor of Central Bank of Nigeria, Mr. Godwin Emefiele and the member representing Ika Federal Constituency at the House of Representatives, Mr. Victor Nwokolo, for donating the money used for the purchase of the equipment for the referral clinic.

Governor Ifeanyi Okowa who congratulated the 05 Initiative for truly impacting on the lives of the people in several ways, said “Nigeria is the headquarters of sickle cell disorder globally and unfortunately we have not paid more attention to the fight against the disease. It is important that we screen them early enough to prevent them from dying needlessly. We need to come out with appropriate legislation that will enable us to make it compulsory for every child that is born to be tested and there is a need to work on this. In this regard whatever the government ought to do is to also offer support to ensure that screening is done for our children. We will try to do our best. It is in the best interest of this nation to attend to them early enough because a lot of them die within the first six months to one year because we have failed to recognise that they are suffering from sickle cell disorder and we failed to attend to them.

“It is important that somebody ought to be a role model and I believe Delta State is able to do so, just as we have become the role model in the issue of health insurance to our people. Currently, we are approaching the one million mark, but it is our hope that we will be able to scale up our health insurance scheme to the two million mark as we approach 2023.” the governor stated.

Dame Okowa recently explained her passion for Sickle Cell warrior sand the reason for her continuous campaign on genotype awareness, “I have known the pains of caring for a carrier as a parent. I also know the unexplainable pain the children have to go through almost on a daily basis for no fault of theirs and I do not wish to see any parent or child go through the same pain. This is why I continually advise intending couples to be aware of their genotype status before walking down the aisle because no child deserves the pains of sickle cell anaemia”, she explained.

The Delta First Lady noted that as much as the grace is given, the goal of her Initiative was to have sickle cell clinics in all the 25 local government areas of Delta State and promised to work assiduously in that regard.

“Do not be the reason any of these ones is discouraged, give hope and love to them, make them see a reason to live life to the fullest even in spite of the pains they go through. If we are able to sow love into the lives of these ones just as God has loved us unconditionally, then we would all be keying into the vision of the 05 Initiative of ‘changing our world, one person at a time”, she said.

Dame Edith Okowa has always reiterated that Sickle Cell is not a death sentence and enjoined those living with the disorder to remain positive as better days had come. This clearly define s her passion to tackle the disorder in the state and provide succor to the warriors. With the establishment of 13 sickle cell clinics and the world class sickle cell Referral Centre in Asaba, Delta State is tackling the scourge.

Dame Okowa’s laudable feat has etched her name in the sands of time and in the history of Nigeria’s fight against the Sickle Cell Disease.

Nelson Egware writes from Asaba,

Delta State.