By Orville Williams
Along with providing invaluable support to sickle cell patients and their families through early detection, the newborn sickle cell screening programme is also expected to save the country thousands of dollars in medical expenses.
The programme was officially launched at Mount St John’s Medical Centre (MSJMC) yesterday, with the first newborn undergoing screening.
While the programme has roots across the region, local efforts have been pioneered by the MSJMC – in partnership with the American University of Antigua (AUA) and the Caribbean Network of Researchers on Sickle Cell Disease and Thalassemia (CAREST) – toward improving the status of a population that has been largely burdened by late detection of the disease.
Through these partnerships, the screenings will come at no additional cost to mothers and while they are currently only accessible at MSJMC, plans are afoot to extend the programme to private medical facilities and also to Barbuda, chair of MSJMC’s Pediatric Department, Dr Shivon Belle-Jarvis, said.
Speaking at the launch, Antigua and Barbuda Sickle Cell Association President, Dr Edda Hadeed, explained that early detection will save the country a considerable amount of resources.
“The testing is being facilitated through CAREST and they are working to improve the lot of sickle cell patients in the Caribbean, as a region. Through a grant from the European Development Fund, they were able to offer us the test at a reduced rate and when we look at the numbers of births we have per year – about 1,100 – we figure about maybe EC$20,000 total. That’s a really, really good price.
“As opposed to that, we did some numbers a few months ago – Dr Belle and I – and on the average, you can expect one child with sickle cell disease will cost the nation, the healthcare sector, about EC$400,000 over five years. Now, not everybody has the same severity of the disease, that’s understood, but even if you halved that number, it’s just amazing. So, there is benefit in that respect as well,” Dr Hadeed explained.
The medical professionals present at the launch – including Chief Medical Officer, Dr Rhonda Sealy-Thomas, and Chair of Obstetrics and Gynecology at MSJMC, Dr Raymond Mansoor – all expressed their gratitude and support for such a groundbreaking programme.
However, Dr Hadeed added that this sentiment also resonates deeply within the directly-affected community, the patients and their families.
“The responses that I got from our patients and their families speak for themselves; they are so happy, so appreciative. One of my mothers said if this had been available when [her] child was born – and the young man is now 19 – it would have saved [her] a lot of heartache.”
Dr Hadeed concurred, adding, “She’s right, it will save a lot of heartache in a number of ways. As we know, the affected child will be found early so this child will get better and earlier care, and that way, grow up healthier with less complications and have a better life.
“Secondly, because we also find the children with the trait, families might just be alerted to the fact that there is a risk and there will be counselling and eventually you will prevent the birth of affected children.
“Lastly, remember how this played out before we became aware of the situation. There are any number of young adults who remember their childhood vividly, they remember being in this agonising pain and nobody knew what to make of it. So, even families would say, you’re just putting this on, you’re just pretending because you’re lazy and you don’t want to do the work, so imagine all this will not happen anymore,” she said.
The first baby screened under the programme early yesterday was born to proud parents, Dania Joseph-Titus and Keithroy Titus.