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Blood disorders, birth defects likely to spike

Expert seeks better data sharing between countries.

Cases of haemoglobin disorders are expected to spike in the coming years with a significant increase in the births of children with sickle cell disease, said an expert.

Despite global figures showing the increased prevalence, Professor Sir David Weatherall, founder of the Weatherall Institute of Molecular Medicine at the University of Oxford, said haemoglobinopathies (haemoglobin-related illnesses) remain a “seriously neglected group of disorders” that until recently were not included in the Global Burden of Diseases (GBD) by the World Health Organisation (WHO).

Haemoglobinopathy is the medical term for a group of blood disorders and diseases that affect red blood cells.

These disorders include thalassaemia and sickle cell disease. Speaking at the 15^th Thalassaemia International Federation (TIF) Conference, which is being held in the Capital this week, Weatherall noted that in the 2006 review of the frequency of birth defects, 7.9 million babies were born each year with congenital defects and genetic disorders while there were 3.3 million deaths.“But the extraordinary thing is, 25 per cent of all these cases comprised only five diseases in which the haemoglobin disorder is one and G6PD deficiency is another,” he pointed out.

“There’s no question the frequency of haemoglobin disorder is going to increase in the next few years and certainly over the next 50 years. We’re very likely to see a major increase in the births of babies with sickle cell disease in the future,” Prof Weatherall said, noting the increase could reach as high as 404,200 by 2050 — from just 310,800 in 2010.

What needs to be done?

“We do the basic things we’re doing now, much better I hope, but (we need) to develop ... partnerships between the poorer countries where things have developed and those countries where they haven’t ... (and) stop the international health agencies ignoring our diseases. We have to have better data on frequency of birth, better mortality data and so on.”

Prof Weatherall said the very high proportion of neonatal deaths in Africa can be prevented by very simple neonatal screening and the use of antibiotics. He urged parents and patients at the conference to contribute in sharing data to get the international health agencies “really aware of these diseases”.

“It’s the first time we get that into the GBD programme, now let’s take that forward,” he suggested. It is estimated that seven per cent of the world’s population are carriers of the genes that may cause disorders of haemoglobin with around 500,000 children born every year with severe inherited blood disorders.

According to the Sultan bin Khalifa Al Nahyan Humanitarian and Scientific Foundation, one in 12 people in the UAE are carriers of the disease.

Risk factors for haemoglobinopathies include natural selection, consanguinity or marriage between close relatives, epidemiological/demographic and population immigration or movement from the poorer countries into richer countries.

olivia@khaleejtimes.com