Pregnant Women and Newborns To Be Screened For Sickle Cell Disease

Come December, all public hospitals in Jamaica will be testing pregnant women and newborns for sickle cell disease (SCD).

The universal screening programme is part of a thrust by the Government, to develop a strong framework for the early detection, diagnosis and treatment of persons suffering from the debilitating condition.

The objective is to minimise the effects of SCD on affected persons, so that they can live normal, healthy lives.

SCD is one of the priority conditions that have been included in the Government’s Strategic and National Action Plan for the prevention and control of non communicable diseases (NCDs) 2013 to 2018.

The plan has the main objective of strengthening the management of SCD at the primary, secondary and tertiary care levels.

The screening programme, being implemented by the Ministry of Health, involves collaboration with the Sickle Cell Unit (SCU) at the University of the West Indies (UWI); National Health Fund (NHF); Sickle Cell Support Foundation; and the Sickle Cell Trust.

The SCU will be carrying out the screenings through a $10 million grant from the NHF.

Director of the SCU, Professor Jennifer Knight-Madden, tells JIS News that the testing of pregnant women and newborns is the first phase of the initiative.

She says training of healthcare workers in caring for persons living with the condition will also be done during this initial phase.

Professor Knight-Madden notes that the focus is on newborns “for the simple reason that the highest chance of dying from sickle cell disease is during the first three years of life.”

She notes that children, who are not diagnosed for SCD, are at risk of experiencing preventable SCD complications, including stroke.

The SCU Director says that six per cent of children between the ages of five and 15, who have SCD, are at high risk of having a stroke.

This was the case of 13-year old sickle cell patient, Roshawn Gordon, who suffered a stroke at the age of five. As a result, he has lost normal function in his right arm and eye, and walks with a slight limp.

“Sometimes it’s OK, but when I go to school, it’s a little harder, because my friends have two good hands and they play some fun games but I can’t because I only have full use of one hand. But I’m trying to make better for myself,” he tells JIS News.

Roshawn says that living with SDC is challenging and painful. “When you feel the pain, it’s like you can’t even move…the last time I had pain was when I had chikungunya. I was at school and my back was hurting  … every time I lay down my back hurt me,” he recounts.

SCD or sickle cell anaemia is a recessive genetic blood disorder, resulting from inheriting abnormal haemoglobin genes from both parents. It is characterised by the red blood cells assuming an abnormal, rigid, sickle shape.

This decreases the flexibility of the cells, blocking blood flow to the limbs and organs, which can cause pain, serious infections, organ damage, stroke and there is an increased risk of death. More than 10 per cent of Jamaicans have the sickle cell gene and the condition affects one in every 150 newborns.

Universal newborn screening for SCD is strongly advocated by experts in the area, including Global leader in SCD and Director of the Sickle Cell Trust, Professor Graham Serjeant.

Professor Serjeant, who is the foremost authority on the clinical manifestations and care of patients with SCD, diagnosed over 300 patients at birth while screening 100,000 babies at the Victoria Jubilee Hospital between 1973 and 1981.

He tells JIS News that the findings from the original Jamaican study proved that newborn screening is essential in preventing many of the complications associated with SCD.

“We learned and continue to learn a huge amount about the disease (from that cohort study) … newborn screening helps in the prevention of early death caused by sudden enlargement of the spleen. The Jamaican study showed that by teaching the parents how to detect this complication in their children and what to do about it, deaths could be prevented,” he points out.

The Government’s programme for the early diagnosis and treatment of SCD is also receiving support from local and international partners, including the Canada-based SickKids-Caribbean Initiative (SCI), which is a non-profit organisation dedicated to the treatment of children suffering from cancer and blood disorders.

SCI will be providing CDN$7,500 for the purchase of newborn screening equipment.

The organisation will also be providing additional funding to procure a training coordinator for a period of four years to instruct local healthcare officers, including nurses, midwives and doctors in screening newborns for SCD.

Additionally, through a tripartite agreement with Brazil and the Pan-American Health Organization (PAHO), the Jamaican Government has acquired a High Performance Liquid Chromatography (HPLC) machine, valued at US$80,000, which was handed over to the SCU in March this year.

Sagicor Group Jamaica has donated medical equipment valued at $7.5 million to the SCU from the proceeds of the 2014 Sagicor Sigma Corporate Run.