With the recent approval of Voxelotor by the National Institute for Health and Care Excellence (NICE) as a treatment for sickle cell disease, following its initial rejection, raising awareness about this condition is more crucial than ever. As we observe Sickle Cell Awareness Month this September and celebrate the success of Rapman’s hit Netflix show Supacell, now is the perfect time to shine a light on sickle cell disease and the advancements in its treatment.
What is sickle cell and who does it primarily affect?
Sickle cell disease is a genetic condition characterised by the abnormal sickling of red blood cells. Healthy red blood cells are described to have a ‘biconcave disc’ shape which resembles a doughnut, without the hole. This shape enables efficient transport of oxygen around the body, facilitating normal bodily functions.
In contrast, individuals with sickle cell disease have red blood cells that take on a crescent or sickle shape when they give up their oxygen. These sickle cells cannot flow through the blood vessels easily and form long chains that block blood flow. This in turn deprives oxygen from reaching various parts of the body, causing severe pain known as a ‘crisis’ and over time leads to organ damage and other health complications. Sickle cells get destroyed much quicker than normal blood cells and this shortage of red blood cells in the individual is what causes the anaemia.
While the condition predominantly affects individuals of African and African-Caribbean descent, it can also impact people from other backgrounds.
Unlike some other conditions, sickle cell may not always be outwardly visible. Coupled with racial stereotypes, particularly affecting the African-Caribbean demographic, there have been significant delays in treatment and preventable fatalities among sickle cell patients.
Why is this piece being written?
Although awareness has increased in recent years, there is still a long way to go, especially given the severity of this condition and the sometimes-hidden nature of sickle cell disease.
I spoke with Chineme Iloh, currently an economics student living with sickle cell anaemia, to get her perspective on the state of sickle cell awareness. She said, “There definitely needs to be more awareness about sickle cell disease. It’s common among people of African and Caribbean descent, and since it’s hereditary, understanding our genotypes is crucial. Increased awareness would also help support individuals within the Black community who have the condition, whether through blood donations or simply understanding what sickle cell entails. Recognising the symptoms can prevent complications and even save lives.”
I also heard from Nav Bhogal, a Boots UK Pharmacist and PDA National Representative, to see what he thinks about sickle cell awareness. He said, “Raising awareness for sickle cell anaemia is essential: it transforms ignorance into understanding, suffering into support, and silence into powerful voices advocating for a cure.”
Why is it important to know your sickle cell status?
As Chineme rightly said, it’s essential to know your genotype and determine if you could be a carrier of sickle cell disease.
How can you check your sickle cell status?
If possible, start by asking your parents or carers.
If that isn’t feasible, I reached out to the Sickle Cell Society to learn how you can determine if you carry the sickle cell trait:
- First, visit your GP or an NHS Sickle Cell & Thalassaemia Centre if available, and request an electrophoresis test
- If your request is denied, ask for an explanation and document it. Then, share this information with the Sickle Cell Society
- The Sickle Cell Society provides resources on sickle cell, such as leaflets on the condition and trait, along with relevant website links. You can suggest these resources to your GP for their reference
- The Society can also guide you to the nearest NHS Sickle Cell & Thalassaemia (SCaT) Centre to schedule a screening appointment. Some of these centres screen individuals not only in their local area but also beyond.
How can you help?
- Know your sickle cell status – Understanding your sickle cell status can guide decisions for your future and that of your loved ones.
- Donate blood if you can – There’s a critical need for more Black blood donors to support those living with sickle cell. Visit NHS Blood Donation for more information.
- Start a conversation – There is a lot of room for sickle cell to be spoken about more. By talking about the severity and often hidden symptoms of sickle cell disease, we can increase awareness and support. Simply asking your family and friends if they are familiar with sickle cell could initiate a conversation about the condition and its impact, influencing crucial future decisions. Talking about it and knowing that the sickle gene evolved to offer some protection against malaria also helps remove the stigma associated with the condition.
With all this said, considering genetic conditions and planning for the future can be challenging and emotional. It’s important to reach out to supportive individuals, such as family and friends. The Sickle Cell Society offers valuable resources for additional information.
By Ewura-Adjoa Yamoah, PDA BAME Network member
Learn more
- PDA BAME Network launches factsheet to mark Sickle Cell Awareness Month
- Sickle Cell Disease in the UK: A Call to Action for Pharmacists
- Sickle Cell Society
- NHS UK – Sickle Cell Disease
- NHS Blood Donation – Why more Black blood donors are needed
- NICE Voxelotor Article
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