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Sickle Cell: Why Are Black Lives in the Healthcare System Ignored?

Exterior sign outside a Sickle Cell and Thalassaemia Centre | Alamy

4 min read

Sickle cell – which disproportionately affects those of Black heritage – is the UK’s fastest growing genetic disorder. Although the NHS’s new campaign highlighting the need for more black donors is positive, the government’s refusal to add sickle cell to the prescription exemption list highlights that inequalities still exist.

According to The Sickle Cell Society, approximately 15,000 people in the UK have sickle cell disorder. Almost 300 babies are born in the UK with sickle cell each year. It is now the fastest growing genetic condition in the UK – yet for decades those with sickle cell have been ignored and overlooked.

Sickle cell is an inherited blood disorder. Red blood cells with sickle cell haemoglobin are stiff and sticky. When they lose their oxygen, they form into the shape of a sickle or crescent. The main symptoms are episodes of severe pain called pain crisis. The excruciating pain starts when the cells change shape after oxygen has been released. The red blood cells then stick together, causing blockages in blood vessels.

The 2020 Black people, racism and human rights report by the Joint Committee on Human Rights revealed that over 60 per cent of Black people do not believe their health is as equally protected by the NHS compared to white people. Whether it is a subtle comment from a medical professional or not being prioritised in emergency rooms because it doesn’t “look like” they’re in pain, those with sickle cell are undermined.

There is a dire need for greater understanding to prevent future deaths like those of Tyrone Airey and Evan Nathan Smith

On 6th October, NHS Blood and Transplant launched the ‘Not Family, But Blood’ campaign – an urgent call for more Black blood donors. New figures reveal 250 donations are needed every day to treat sickle cell. Those who are Black African, Caribbean and of Black mixed ethnicity are more likely to have the rare blood subtype, Ro, that many Black sickle cell patients need.

Although this call for more Black blood donors is positive it almost feels too late. Centuries of racial discrimination have hard-wired inequality within our institutions. From medical bias to overt exclusion, many issues still prevail.

Last year the government declined to add sickle cell to the prescription exemption list, and still do today. The list covers an array of genetic illnesses like cystic fibrosis, of 10,500 people are living with in the UK - 93% of whom are white. So, as the fastest growing genetic condition in the UK, why are those with sickle cell not granted the same financial relief? 

During a parliamentary debate sparked by the All-Party Parliamentary Group on Sickle Cell and Thalassaemia’s landmark ‘No One’s Listening’ report in 2021, MP Maria Caulfield (then Minister of State for Health) said, “For those with long-term conditions, such as sickle cell, there is the pre-payment certificates where, for £2 per week, no matter how many items they have to order – they’re covered.’

While she advocated for pre-payment certificates (PPC), Caulfield overlooked that they can cost up to £100 to apply for. The prescription charge in England is £9.35 per item and a PPC totals £30.25 for 3 months or £108.10 for 12 months. Furthermore, her statement undermines the fact that patients with sickle cell are acutely affected by wider determinants of health such as poor housing, poverty and unemployment – which only leads to further financial burden.

There is a dire need for greater understanding to prevent future deaths like those of Tyrone Airey and Evan Nathan Smith - both of whom died due to lack of awareness and recognition of sickle cell within the NHS, a lack of awareness underlined by racism.

The decision not to add sickle cell to the prescription exemption list was a fatal mistake. Nothing can mask the racism that is entrenched at the core of our healthcare system and government. Sickle cell patients cries for help deserve to be taken seriously and crucial steps need to be taken across the board in training, attitudes, and treatments.  

Aaliyah Harry is a News and Entertainment writer who has written for Grazia UK, The Voice and Metro

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