Nigeria faces sickle cell management crisis

Dataphyte: Sickle cell disease and the struggle for survival in Nigeria

(Source: eHealth Africa)

Twenty-five year-old Aina Ajibola dropped out of Abraham Adesanya Polytechnic, giving up her dream of becoming a graduate. This was the second time she was abandoning tertiary education, the first being at Obafemi Awolowo University. 

Her quest to obtain a health qualification to save lives was relegated as she now had to spend each passing minute fighting for her life.

The resident of Odogbolu in Ogun State bemoaned her fate as her condition with sickle cell anemia had changed her life’s course. She fought for her life daily as her parents did not have the financial means to take care of her.

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“I was always in and out of the hospital for as long as I can remember. I never had a normal childhood; the hospital was my first home. Today, I watch my friends graduate from higher institution. something my state of health didn’t permit. I gave up after two trials. For now, my health is more important,” she lamented.

For Mrs Blessing, who lives in Minna, Niger State, it was a surprise when her first child was always in and out of the hospital after birth. The curious doctor recommended a genotype test which confirmed that the child had sickle cell anemia. This remained a surprise for the parents who had a genotype test and were certified compatible before getting married.

This forced them to conduct another test which revealed that they were both AS. This is the fate of several Nigerian couples.

Annually, 300,000 babies are born with sickle cell globally, and it is estimated that this figure will rise to 400,000 by 2050. This makes sickle cell a global public health issue as stated by the World Health Organisation (WHO) and the United Nations (UN). Its eradication is paramount as it is one of the sustainable development goals (SDG 3).

Sickle cell disease is caused by a modification in the shape of the red blood cell from a smooth donut into a crescent or half-moon shape. This shortens the survival of the red blood cell, leading to anemia, thus the name sickle cell anemia. Poor blood oxygen levels and blood vessel blockages in people with sickle-cell disease can lead to chronic, acute pain syndromes, severe bacterial infections, and necrosis (tissue death).

A study revealed a 95 percent mortality rate in sickle cell anemia carriers with a higher prevalence in Africa.

In Africa, it is estimated that 15.3 percent of sickle cell carriers die as an infant, 36.4 percent die before their fifth birthday, and 43.3 percent before their 10th birthday. This shows a greater mortality rate in children, a challenge for attaining SDG 3.2.

Data show that 90 percent of the world’s sickle cell carriers are in Nigeria, India, and the Democratic Republic of Congo.

This places Nigeria at high risk, with about 100,000 to 150,000 newborns annually, which means that the country accounts for about 33 percent of the annual estimated sickle cell births globally.

While there is no cure for sickle cell, managing patients by relieving symptoms and preventing complications from other diseases remain the practice.

Thus, access to medical care is a major issue for sickle cell carriers in the country.

Communications Officer, Sickle Cell Advocacy Management Initiative, a non-governmental organisation, Abayomi Oyelami, noted that there were no special facilities dedicated to managing and treating persons living with sickle cell in Nigeria in many cases.

“Our tertiary health institutions, which have the personnel capacity to handle sickle cell, do so under the hematology departments. This specialized care addresses blood issues, including sickle cell, HIV/AIDS, cancer, etc. This is an already too large a group for the hematologists, especially with the capital flight the country is currently experiencing in the health sector.” 

The communications officer noted that incidences of sickle cell could be reduced with proper and adequate education about the genetic disorder.  

He lamented that genotype testing, which formed a critical foundation, had yet to be fully explored. He further said that millions of Nigerian youths within marriageable age did not know their genotypes, stressing that those who thought they knew sometimes confused blood groups with blood genotypes.

Others, he said, had incorrect genotypes due to misdiagnosis occurring in medical laboratories.

Oyelami said that there was still miles to be covered regarding sickle cell management and education in Nigeria, noting that some recommendations were put forward for the country reputed to have the highest number of people living with sickle cell worldwide.

He added that compulsory newborn screening was a national health policy, stressing that submission of blood group and genotype results should become a prerequisite for admission to elementary and secondary schools.

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