Parents of children with Sickle Cell Disease have appealed to the state and federal governments for assistance as the cost of drugs and treatment continues to skyrocket.
They made the appeal in separate interviews with the News Agency of Nigeria on the sidelines of an event organized by the Vicar Hope Foundation to commemorate 2024 World Sickle Cell Day in Aba, Abia on Saturday.
NAN reports that the global observance day is annually celebrated on June 19 to raise awareness about sickle cell disease.
The theme for 2024 is ‘Hope Through Progress: Advancing Sickle Cell Care Globally’.
The parents, pleaded for urgent help to save their children’s lives, saying they cannot afford the cost of medications and management of the disease.
One of them, Mrs Ngozi Ogbonna, said a false laboratory test result made her get married to her husband, who had the AS gene like herself and they ended up having four children, with two being SS.
She said managing two children with the disease had become expensive, hence the need for government assistance.
Ogbonna said the government should not leave the medical care of children with SCD to only parents if they want the children to survive and be useful.
Another, Okechukwu Joseph, said taking care of his second daughter, an SCD patient, had been quite a financial strain.
He added, “My experience with 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 because the cost has become unaffordable to many parents now.”
Ogechi Onyekachi, whose twin boys are also living with the disorder, said it had not been easy caring for them, especially now that the in the cost of drugs and treatment has increased.”
She further begged the government to come to her aid and that of other poor families facing the same challenge as taking care of SCD children has become a herculean task.
A Medical Consultant, Dr Emeka Nwakamma, while speaking earlier said SCD patients could prolong the lives of their children by avoiding painful crises and infections.
He advised those with the disorder to always drink plenty of water, avoid getting too hot or too cold, not to carry out hard exercises, and to avoid exposure 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.
Nwakamma 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 Hemoglobin AS.”
He explained that persons with AS genes do not usually have symptoms and signs of SCD, but could transmit the gene to their children, thereby propagating the disease condition.
Nwakamma said there is no single best treatment for people with SCD, as options are different for each person, depending on the symptoms.
He said SCD treatments include blood transfusion, drinking lots of water, intravenous fluid therapy and medications to reduce pain, prompt malaria and other infections treatment.
The consultant said that for severe SCD, a medicine called hydroxyurea might be recommended to reduce painful crises and hospital stays.
The expert added that the recommended treatment modality on the horizon is Gene therapy, which, however, is not everywhere now.