The Manchester Project — screening for sickle cell, one baby at a time

BY NADINE WILSON Observer reporter

Monday, February 11, 2013

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PRIOR to 2007, the screening of Jamaican babies for Sickle Cell Disease (SCD) was only done in the Corporate Area; but then came the Sickle Cell Trust (SCT) Manchester Project, which in five years has managed to screen almost 32,000 babies for the disease at five hospitals in that parish.

The screening of newborns is one of the surest ways of preventing complications and early death of patients with the disease, which is a genetic condition resulting from the inheritance of abnormal haemoglobin genes from both parents. It is one of the major causes of paediatric deaths worldwide.

"The approach that we like to look at it from is to say that it is a chronic disorder in which you have a manifestation from early in life, from as early as four months for some people, and they will have this problem for the rest of their life until they die," explained director of the Sickle Cell Unit, Professor Marvin Reid.

The incidence of SCD in Jamaica is relatively high, as one in every 150 children born has a form of sickle cell disease, compared to one in every 375 African-Americans born in the United States. Approximately 15 per cent, or 390,000 Jamaicans are at risk of having a child with a form of SCD.

The main symptoms include painful crises (bouts of moderate to severe pain), bone damage (especially the hip joint), jaundice, lethargy, painful leg ulcers (sores around the ankles), increased susceptibility to infections especially pneumonia and meningitis, strokes, renal (kidney) failure, loss of vision and other eye problems.

In an effort to detect sickle cell’s abnormal haemoglobin in Jamaicans as early as possible, the Manchester Project has been screening newborns at the Percy Junor Hospital, as well as the Mandeville, Black River, May Pen and Hargreaves Memorial hospitals. The project also screens fifth- and sixth-form students from 13 secondary schools in Manchester and two in Clarendon.

"The concept behind the Manchester Project is that we need to find out if we give intelligent, educated young persons the information as to what their haemoglobin status is, would it make a difference to their choices of partners, and then would it make a difference in the number of sickle cell children being born?," explained technologist and educational co-ordinator for the SCT, Karlene Mason.

The SCT is a charity which was registered in 1986 by former director of the Sickle Cell Unit, Professor Graham Serjeant. The group had an ongoing education programme in which they taught senior secondary school students about sickle cell. Under the Manchester Project, they have also been screening high school students since 2007, as well. Approximately 2,600 students have been screened annually.

Although the Manchester Project was supposed to have lasted five years, it was extended and will officially end in June of this year. At that time, a total compilation of all the babies and students who have been screened over the six years will be done.

"One of the things we have started doing is that we have started noting the number of students that were screened who have actually had babies, because we actually have the database of the babies that were born and we actually have the database of our students," said Mason.

Nearly 1,000 of the students who have been screened since the 2007-2008 academic year have gotten pregnant since. Of this number, three persons who carried a haemoglobin genotype had gone ahead and had a baby with sickle cell disease.

"In terms of the overall assessment, that obviously will be done when we have the totality of the births up to June and the total number of students leading up to June," she said.

So far, the project has helped to identify 107 babies with the haemoglobin genotype SS and about 73 babies with SC, which is another type of haemoglobin genotype. In addition to this, the project was also able to detect a number of primarily female students who were anaemic due to iron deficiency.

"It's usually because of poor diet, so we also thought that we would be able to deal with this by simply referring them to the nearest clinic. But what we found in the end was that we had to buy the iron tablets ourselves and put them on a course of iron and test them afterwards to see how they are doing," Mason explained.

The Manchester Project is primarily funded by the National Health Fund and the ALCOA Foundation, along with a number of other donors which have come on board over the years. Although the project was to initially cost $5.5 million, the SCT was able to secure even more funds than this through these donors.

Now that the project is nearing an end, Mason hopes that the cord blood-screening component of it will be taken over by the Ministry of Health, in a bid to have all babies born in Jamaica screened.

"It is important that the screening continues, because what happens is that in sickle cell disease, a lot of the advances that have been made, have been made in the paediatric realm," she said.

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