Parents of children with sickle cell seek government support as treatment costs soar

Some parents of children with sickle cell disease (SCD) have appealed to the government to assist them, as the cost of drugs and treatment has skyrocketed.

They made the appeal in separate interviews with journalists on the sidelines of an event by the Vicar Hope Foundation to commemorate 2024 World Sickle Cell Day in Aba, Abia, on Saturday.

The global observance day is annually celebrated on June 19. World Sickle Cell Day is an annual observance held on June 19 to raise awareness about sickle cell disease.

The theme for the 2024 commemoration is “Hope Through Progress: Advancing Sickle Cell Care Globally.”

The parents, therefore, pleaded for urgent help to save their children’s lives, saying they could not afford the cost of the medication and management of the disease.

One of the parents, Ngozi Ogbonna, said that a false laboratory test result caused her to marry her husband, who had an AS gene like herself, which produced four children, with two being SS.

She said that managing two children with the sickle cell gene had become expensive, hence the need for government assistance.

Ms Ogbonna said the government should not leave the medical care of children with SCD to the parents of patients if they want such children to survive and be useful.

Another parent, Okechukwu Joseph, said  that his second daughter, a SCD patient, had been a source of huge expenses for the family.

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He added that “my experience with the doctors is that they are not doing the best that is required, so they need more specialised training.

“At FMC Umuahia, my child was left to student doctors who were using her for experiments; hospitals should do better.

“And the government should consider the lives of these poor children with SCD and save them by assisting in their healthcare, whose cost has become unaffordable to many parents now,” he said.

Ogechi Onyekachi, whose twin boys are also living with the disorder, said it had not been easy caring for them, “especially in this season of high drug and treatment costs.”

She begged the government to come to her aid and that of other poor families “because taking care of SCD children has become a herculean task.”

Emeka Nwakamma, a medical consultant, said earlier in his speech that SCD patients could prolong their lives by avoiding painful crises and infections.

He advised patients to drink plenty of water, avoid getting too hot or too cold, do hard exercises and expose themselves to low oxygen levels to escape painful crises.

He defined SCD as a group of blood disorders inherited from a person’s parents the same way people get the colour of their eyes, skin and hair.

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He said, “A person with SCD is born with it and it occurs when he/she inherits two abnormal copies of the haemoglobin gene, one from each parent.

“The abnormal genes with sickle cell traits include haemoglobin SS, also called sickle cell anaemia, the most severe form of the disease; haemoglobin SC; S-beta thalassemia; haemoglobin SD; and SE.

“Sickle Cell Trait (SCT), also called carrier state, occurs when only one abnormal copy of the haemoglobin gene is inherited, such as haemoglobin AS,” he said.

He explained that people with AS genes do not usually have symptoms or signs of SCD but could transmit the gene to their children, thereby propagating the disease condition.

Mr Nwakamma said there is no single best treatment for all people with SCD, as  options are different for each person depending on the symptoms.

He said that SCD treatments include blood transfusions, drinking a lot of water, intravenous fluid therapy, medications to reduce pain, prompt malaria and other infection treatments.

The consultant said that for severe SCD, a medicine called hydroxyurea might be recommended to reduce painful crises and hospital stays.

He  said that the recommended treatment modality on the horizon is gene therapy, which, however, is not everywhere now.

*Cover pix courtesy Yale medicine publication 


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