Health personnel trained on newborn screening for sickle cell disease

President of Sickle Cell Foundation Professor Kwaku Ohene- Frempong

The Sickle Cell Foundation (SCF) has embarked on a training workshop for health personnel to adequately equip them for the nationwide newborn sickle cell screening scheduled to start early next year.

The newborn screening, which has been piloted in the Ashanti Region, is expected to be rolled out throughout Ghana in all the regional capitals and districts.

Speaking to The Chronicle in Accra on Wednesday, the President of the Foundation, Professor Kwaku Ohene-Frimpong, said: 'So this workshop is for all the districts in Greater Accra, to give them information on why we are doing newborn screening, and then, how we are going to do it.'

According to him, the two-day training was necessary because, 'These are the people who are going to be at all our health centres and hospitals managing babies and taking blood samples to the laboratories for testing,' and if everything goes well, the whole country would be covered in three to four years.

He lamented that although the sickle cell disease had existed for thousands of years and had killed a lot of people, particularly children, many people did not get to know their status in time to receive effective treatment.

He stated that the World Health Organisation (WHO) has estimated that between 5 and 6% of under-five mortality in Africa is caused by sickle cell disease, yet, for a long time, it was not mentioned as a major killer of children.

Professor Ohene-Frimpong, who is also Emeritus of Pediatrics at the Children's Hospital of Philadelphia, noted that in Ghana, 14% of babies born at birth are AS, 8% are AC, 1% are SS and about 0.8% are SC. Thus, altogether, about 2% of babies have a form of the sickle cell disease.

He added that about 14,000 are born yearly with the disease, and, 'If you add up to every year how many are being born, there is more sickle cell in children, than there is HIV.'

Furthermore, he expressed worry that the many children dying from malaria, pneumonia and respiratory diseases was due to sickle cell disease, but which was unknown to their parents.

'Now that we recognise this, and particularly, since we can do some simple things to keep these children alive and healthy, it is important to carry out this exercise,' he said, adding that there was evidence in many countries that newborn screening, treatment, and education given to the families, help them to save the lives of their children.

He pointed out that the highest death of newborns with sickle cell disease was seen in the first three years, thus, if newborns with the disease were identified early enough and receive treatment, mortality in the first three years would be completely cleared.

Therefore, the newborn screening would help to reduce the deaths of children, but its total elimination would be difficult, because the disease is hereditary, unless there is a real cure for it.

However, at the moment, the only cure for sickle cell disease is bone marrow transplantat or stem cell transplantation, which is not available in the developing world, and, 'Even in the more developed parts of the world, it is not treatment that most patients can receive,' the Professor explained.

Also, he indicated that sickle cell was a disease that needs to be managed, so that children do not die unnecessarily, saying, 'Along the way, if we get some very useful treatment for them, of course, we will take advantage of it, but if we cannot organise and take care of them in clinics, we cannot even know who to give the medications to, when they become available.'

In terms of cost, he said the screening would be free for children under five, because the National Health Insurance Scheme had agreed to cover the test, whether the parents are subscribing to it or not.

Also, treatment for children is done mainly with penicillin and folic acid, which, according to him, are two of the cheapest medicines, but, 'depending upon where they go, whether insurance is accepted there or not, that may incur some cost,' he said.

He further stated that the medicine given to sickle cell patients on a daily basis was not expensive, but it could be expensive if patients develop certain types of complications that would require them to stay in hospital for a long time.

As to whether it was advisable for people not to enter into marriage when they both have the disease, he said, 'From our point of view, as medical scientists or an agency of government doing its work, we cannot really tell people what they should do in terms of marriage choices.'

The idea is to give people the opportunity to be tested long before they have to make that decision, and though in our part of the world we think marriage means children, many people marry who may not want to have children, he stressed.

He added that presently, it was possible to test a baby very early in pregnancy to find out whether the baby was SS or otherwise, for a decision to be taken about it.