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We are helping parents know if their child is born with Sickle Cell Disease – Dr Alexis Thompson

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Nigeria currently has the world’s largest burden of Sickle Cell Disease ,SCD.  Approximately 150,000  Nigerian babies are born with the disorder every year while approximately four million Nigerians are carriers of the sickle cell trait.

In this interview with SOLA OGUNDIPE, Dr. Alexis A. Thompson, President of the American Society of Hematology, ASH, professor at Northwestern University Feinberg School of Medicine, and head of the hematology section at the Ann & Robert H. Lurie Children’s Hospital of Chicago, speaks about the need to control SCD in low resource settings such as Nigeria.

Dr. Alexis Thompson

She highlights importance of identifying unmet medical needs of persons living with SCD and providing appropriate clinical care while promoting wider utilisation of the Newborn Screening, NBS  and early intervention initiatives. Excerpts:

From the perspective of the ASH/Sickle Cell Disease Coalition, what specific lessons from SCD-targeted initiatives in industrialised countries, notably the USA, can be applied in managing and controlling SCD in the low resource settings?

We’ve learned from targeted initiatives in places like the United States that there are really three things that help improve survival among infants with sickle cell disease: parental knowledge, newborn screening and the use of penicillin.

Data shows that children with sickle cell disease are more likely to survive infancy if their parents are knowledgeable about the disease and its associated special health care needs. This realisation has led to universal newborn screening in the United States.

Penicillin is also important because people with SCD have weaker immune systems and are therefore more susceptible to infections. Newborn screening and access to daily penicillin has helped to dramatically reduce mortality in countries like the US and the United Kingdom. Full vaccination for children with SCD is also important.

What’s more, we’ve seen that incorporating these principles—increased parental education, more widespread newborn screening, and improved access to penicillin—has had a dramatic effect in reducing childhood mortality in other countries like Jamaica and Brazil.

What is the concept of Newborn Screening, NBS in reducing high mortality of SCD in undiagnosed infants/children?

The practice of newborn screening involves collecting just a few drops of blood from every baby born in a hospital. These drops of blood are put onto a piece of paper to be processed in a lab.

If the results show that the newborn has SCD, the hospital can notify the parents. Parents who know their child’s status can gain education about how to manage this disease and take small steps that will dramatically improve their baby’s chance of surviving infancy.

Another way we see this knowledge helping is in treating malaria. We know that a child with SCD that contracts malaria will get sick much more quickly and is at very high risk of dying from malaria, so not only is it important to remain diligent with prevention practices like using bed nets, but also in getting proper care if a child with SCD does contract malaria.

For a child with SCD, common fever treatment techniques like cool baths aren’t enough, but getting to a doctor shortly after the onset of malarial symptoms can help save that child’s life.

What are the prospects for enhancing NBS in high SCD burden countries like Nigeria and training of experts and development of relevant guidelines and national policies?

We’re really excited to be engaging health care facilities and leaders about expanding NBS initiatives in Nigeria, Ghana and other countries across Africa.

These are discussions not only about the successful outcomes associated with expanded NBS programmes, but also about how to help doctors and other health care providers care for people living with SCD.

One of the best ways to educate and equip these doctors is through the development of effective, evidence-based treatment guidelines. A collaborative effort comprised of several health care organisations across Africa is currently working to create guidelines specifically focused on enhancing care for SCD with limited resources. I think both of these programmes have the potential to bring amazing results in improving care for people with SCD across Africa.

How is ASH helping to ensure that available  SCD  therapies are more widely available in Nigeria, Ghana, etc?

ASH is committed to supporting research and collaborations that aim to increase the accessibility of therapies, and we continue to convene the very best minds in science and medicine at meetings around the globe to discuss just how we can achieve that goal.

The number of people living with SCD is increasing. In what ways can the NBS help develop and promote more effective SCD prevention initiatives?

You’re right—one study estimates that the number of people with SCD could grow by as much as 30 per cent by 2050.

And that’s really where this initiative by ASH and the SCD Coalition was born: by using NBS to help parents know if their child is born with SCD, we cannot only start them on penicillin from a very early age, but those parents can better understand that their child may from time to time need extra medical care.

We want parents to understand that by getting their child the appropriate care they need from a doctor or nurse equipped with the knowledge and medicine to care for people with SCD, they can help their child live long, relatively healthy lives.

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