Renewed efforts to reduce sickle cell burden in Nigeria

• Bone marrow transplant centre yet to get government support
• SCFN, Multi Choice partner to sensitise local communities on genetic disorder
• Tonymay Foundation seeks partnership on awareness creation, funding

As part of activities to mark the World Sickle Cell Day (WSCD) and reduce the burden of the disease in the country, stakeholders have renewed their commitments.

Coordinator of the Stem Cell Transplant Unit, University of Benin Teaching Hospital (UBTH) Edo State, Dr. Godwin Bazuaye has disclosed that the bone marrow transplant center at the hospital is yet to receive any government support.

Speaking in Lagos at a lecture to commemorate the World Sickle Cell Day, Bazuaye said the center has been on break due to lack of funds after the last transplant in 2013.

He noted that though rumor and alleged publications has it that the previous government approved a 100 million naira to the center in 2012 and the current administration has also approved N10 million this year, none has been received by the center yet.

“Since 2013 when we did the last one, we are yet to get real funding from the Federal Government to run the place, as internally generated revenue were sourced to fund the three we did, and the center haven’t been functional for three years now due to lack of funds.”

Answering on steps taken to probe for the purported approved government funds, Bazuaye said “it is between the health ministry and government, am a scientist, not a politician.”

He said Stem cell transplantation, formally referred to as bone marrow transplant, is the only cure for the genetic sickle cell disorder (SCD), where Nigeria parades with the highest prevalence in the world with over four per cent of her population affected.

Meanwhile, Chief Executive Officer of the Sickle Cell Foundation, Nigeria (SCFN), Dr. Annette Akinsete, hitherto the lecture pointed out that Sickle Cell Disorder (SCD) is a genetic blood disorder affecting the red blood cells of victims, and about 150,000 babies are born with the disorder annually in Nigeria.

Akinsete who was speaking at an awareness programme at Ijede, Ikorodu, a suburb of Lagos state noted that awareness on the disorder needs to be taken to the grass roots in other to break the myth that SCD persons are afflicted spiritually, “it is hereditary and not a death sentence.

The programme was organized in partnership with Multi Choice.

”We need people to know the disorder is hereditary and also for them to know their genotype when they are still young before they get into relationships ignorantly, that is why we are presenting free test and treatment to the community,” she expressed.

The SCFN boss beckoned on the government to be more involved in the fight and also introduce newborn screening to enable early detection for adequate measures.

Similarly, the Tonymay Sickle Cell Aid Foundation, a Non- Governmental Organization who provides support for persons living with the disorder appealed for support and collaboration to push their mandate of awareness creation.

In a statement signed by Chief Executive Officer, Tonymay Foundation, Mrs. Edith Otokhina, stated that the foundation’s contribution towards the scourge was to organize awareness pragrammes at secondary schools around Ikeja and Somolu in Lagos to enlighten both staff and students on the management and prevention of the genetic disorder.

Tonymay Foundation was incorporated under part C at Corporate Affairs Commission (CAC) in 2010, and has since been laising with like minds NGOs like SCFN and Sickle Cell Association in Nigeria, Sickle Cell Clubs among others.

Bazuaye, the first haematologist and stem cell transplantologist to perform the transplant in Nigeria and sub Saharan Africa Region lamented that several patients who have gotten donors have been programmed for the procedure, but no funds to proceed.

According to him, Nigeria has the cheapest cost for the procedure (five million naira) in the world, as compared to 40 and 50 million naira in Europe and America, “but the cost is still enormous for the average Nigerian.”

He advanced that about a million naira of the amount charged is used to power generators for the procedure for all the over four months period, and close to another two million naira is expensed on drugs because they are imported given that they are not routine medications.

“The average Nigerian cannot afford the cost except government subsidizes and wave duties on importation of those drugs. Until this is done, cure cannot be provided to many SCD patients to reduce the country’s burden rate.”

“If government, subsidizes, the cost might drop to less than one million naira,” he added.

Bazuaye however appealed to government to set up an International Transplant Center that would afford cure for more SCD persons through the procedure.

With this center, “we could transplant close to 100 persons yearly and use the same method to cure patients with blood cancers and other related conditions,” he expressed.

The transplant expert revealed that hitherto now, the age range for transplantation was 15 and below but technology has improved and it now covers up to age 45.

He explained further, “although transplantation in adults has not started in Nigeria, many adult Nigerians with the disorder would not be eligible for the procedure due to poor management that results to complications. And if organs like the liver and kidney are in bad condition, drugs during the procedure would not metabolize well and this can cause casualties.”

Akinsete in an earlier address also appealed to government and well meaning Nigerians to assist with the raising of the 250 million naira needed to start up a transplant center at Lagos University Teaching Hospital (LUTH).

Public Relation Manager Multi Choice, Mrs. Caroline Oghuma, believed that the partnership is a way they can give back to the society in which they operate. Oghuma who was disturbed with the increasing figure of sickle cell disorder in Africa said that through their channel platform DSTV and GOTV they will continue to create awareness about the disorder. She also enjoins the public to see reasons to support the Foundation.

Commissioner of Health, Lagos State, Dr. Lekan Pitan, who was represented by the Honorable member Babatunde Solaja, assured the public on the stance of Lagos state government in eradicating all kind of diseases. He also appreciated Multi Choice: “It is the social responsibility for any organization who gain from the community to find a way to give back to the society.”

Solaja also encouraged other cooperates who gain from the community to see reasons to give back to the community.

Solaja commended the Sickle Cell Foundation for the fact that they educate the general public especially people within the rural area in steps to take when such cases arise in order to make the child live a normal and healthy life.

Bazuaye regretted that lack of government support is disheartening and discouraging, “but am hopeful the wind of change would blow into the health sector too.”

He stated lack of power, personnel and government insincerity as major challenges affecting the center, the only one in the country.

“Nigeria has broken the inability gene of developing countries to perform the transplantation with the Benin protocol, and this is an indication that with government support, it could be done better.”

“Government needs to invest in the health care system of the country to ensure we make progress, one isolation room to over four million people in the country is far below standard,” he expressed.

Funding is a fundamental issue he stressed and government needs to properly fund the health sector to prevent medical tourism of procedures that can be done in the country at cheaper cost.

He stated that success rate of the transplantation ranges between 90 to 95 per cent among children and 60 to 80 per cent in adults due to organ damages.