Stakeholders advocate for more awareness on sickle cell anaemia

Healthcare practitioners and sickle cell based Non-Governmental organisations have advocated for the need to educate the young and adult generation on sickle cell anaemia, which will help change their behaviours, create awareness on societal norms and policies regarding sickle cell prevention, detection and management.

This was said in a round table meeting tagged project GenEducation, a sickle cell awareness for Education and Advocacy organised by CrimsonBow Sickle cell initiative. The event took place in Lagos on the 27th of January, 2022.

CrimsonBow sickle cell initiative (SCI), a non-for profit organisation incorporated on October 27, 2016, is a resource community for sickle cell warriors focused on creating support for every Sickle cell individual in Nigeria and creating a world were they live life to its fullness.

The high level meeting which brought various stakeholders together all for the fight against sickle cell disease (SCD) was organised in partnership with Sickle Cell Foundation Nigeria, Sickle Cell Advocacy and Management Initiative, TonyMay Foundation, Genotype Foundation and many others and it was founded by Ford Foundation.

The event was tagged Sickle Cell Advocacy: partnership for healthcare and inclusiveness. The founder and CEO of CrimsonBow SCI, Miss Timi Edwin who is also a sickle cell warrior revealed that the mission of the initiative is to inspire hope and contribute to the improved health and well being of sickle cell people by leveraging on available resources to provide educational, emotional, financial and medical support to warriors who are in need while aiming to eradicate the condition.

As at 2022, over 13,000 people had been affected positively with support of various NGOs. Miss Edwin also lamented on the crisis and financial burden of managing the disease and called for support from government NGOs on creating more awareness and interventions towards improving the lives of people living with the disease.

Professor Akin Osibogun, the keynote speaker at the event noted that it is important to make information available to individuals, families and communities to reduce the likelihood of couples having HbSS babies.

Prof Osibogun, Chairman Lagos state primary health care governor who was represented by Dr. Abdulkabir B. Adegoke, Senior Resident and Chief Resident, Department of Community Health and Primary Care, Lagos University Teaching Hospital Idi-Araba, Lagos further said that studies has reported that the prevalence of sickle cell trait in Nigeria is as high as 25 percent which implies that 1-4 Nigerians have the trait and 1-3 percent have SCD.

He furthermore said that a 1982 study had estimated that about 30,000 babies are born annually in Nigeria with SCD saying the numbers will be even higher now given the increase in the Nigerian population.

Prof. Osibogun further advised that “SCD affects a large number of Nigerians but with available knowledge the disease can be prevented. It is therefore equally important to make information about treatment options and advances in management available to patients with SCD and their relatives.

“high level advocacy to policy makers and purse holders is indeed very important to ensure that the investments required for prevention, control and management of SCD are made.”

Dr. Alayo Sopekun, The Desk officer, sickle cell control programme, Federal Ministry of Health said that there is need to do a lot more on awareness, in advocacy and in improving the quality of life of those living with SCD and ensuring that we reduce however it is going to be out-of-pocket expenses for them.

Sopekun said “ The federal government through the federal ministry of health has taken a lot of steps, the first one was in 1990/1991 when they did a national survey for non-communicable diseases and sickle cell was included because federal government realized that SC is a problem.

“Nigeria has the highest burden globally followed by The Democratic Republic of Congo DRC and India.

“A strategy plan was developed to address SC in Nigeria and in 2011 with the support of Nigeria Director General (NDG), six zonal SC centres were established, one in each geo-political zones in the country.

“There is one in Ebute -meta Lagos which is very much functioning and they are equipped with high performance liquid thermography and that is to ensure we are able to pick these children that are born with this disease early and follow up and not allow them die before the age of five.”

The first lady of Lagos State, Dr Ibijoke Sanwo-Olu who was able represented by Dr Juliana Olusanya, Medical Director, General Hospital, Ebute Meta, commended the effort of all the various stakeholders and urged them to continue to do more in terms of awareness and advocacy so as to reduce the risk attached to SCD.

Also speaking at the event Dr Olurotimi Agbolagorite, Director Public Health, the Lagos State Ministry of Health said that the government alone can not do the work as all hands must be on deck to move the advocacy of SC to better achievements.

Dr Agbolagorite who was represented by Dr. Wellington Abosede officer in charge of Non Communicable diseases (NCD) disclosed that;

“There is an ongoing initiative to test and inform primary and secondary school children on their genotype.
“This initiative is not to scare them but to get them inform early about their genotype.”

A medical Expert, Dr Chris Otigbuo suggested that if tuberculosis patients could have their drugs free of charge then sickle cell patients should also enjoy such benefits. He called on the government and all stakeholders to give support to SC warriors.