World Sickle Cell Day: How the deaths of two black men is inspiring a new intake of blood donors

The deaths of Nathan Evans Smith (left) and Richard Okorogheye (right) brought new focus on sickle cell disease. Picture: Archive.

THE TRAGIC deaths of two young black men who suffered from sickle cell during a global pandemic brought a widespread, yet frequently undocumented disease to the country’s attention.

When the cases of Richard Okorogheye and Nathan Evans Smith hit mainstream news, it reverberated throughout the media and was felt most acutely in the black community.

Richard, a 19-year-old first year student at Oxford Brookes University, was shielding from the start the COVID-19 pandemic with his mother and was considered high risk due to his condition with sickle cell.

He went missing on 22 March after “struggling to cope” with the pressures of university in lockdown and his body was later found in Epping forest on 5 April with his official cause of death still unknown. 

His mother, Evidence Joel, claimed that upon reporting her son missing the next day that the police did not categorise him as a missing person until March 24 and was “not taken seriously” with her concerns.

The negligence of those enlisted to look after us echoes the circumstances of Nathan’s death – a 21-year-old sickle cell patient who was forced to call 999 from his hospital bed. He was repeatedly refused a lifesaving blood transfusion and denied oxygen while placed on a “lodger” bed.

A coroner ruled that there was a “failure” to appreciate the “significance” of Mr Smith’s symptoms” as he was later pronounced dead after developing sepsis. 

Sickle cell remains the fastest growing genetic condition in the UK affecting 14,000 patients like Richard and Nathan, while 300 babies are born with the sickle cell trait each year.

Despite the common misconception, it can affect anyone from any ethnic background, however, the disease remains most prominent in African and Caribbean communities.

Orin Lewis, Co-Founder and CEO of the African Caribbean Leukaemia Trust, acknowledges that although systemic disadvantages and the government’s failing in listing those with sickle cell disease as high risk, he believes the responsibility of looking after the most vulnerable in our community, lies with those already a part of it.

“The case of Nathan Evans Smith came up after his inquest which highlighted his lack of treatment resulted in his tragic death, but well-matched blood is also part of that,” said Orin. “Sickle cell patients need this, and ethnicity does play a role in this to get the best blood transfusion for each patient.

“Most blood groups are found in the black community and one particular one is called RO which is mainly found in black people.”

According to recent figures, from 2019 until the end of November, only 915 black women from Greater London gave blood for the first time and even fewer black men with 517 becoming blood donors. 

Orin, who has given blood 47 times throughout his life, believes that a lack of awareness of sickle cell disease in the black community itself, is partly what continues to fuel the discourse of patients and the people they rely on. 

“There’s always a presumption that white people will donate blood, most people in this country receive blood from white people who just happen to have the same blood group as them,” he said. “Black people have let loose their responsibility of stepping up to the plate on this when their race counts.

“So it’s a lack of awareness but I don’t buy that so much anymore. I think it’s apathy, hypocrisy in saying black lives matter, but then when you have something that is racially and ethnically driven, they are not stepping up when the urgency is there.”

Chanel Taylor, 37, was diagnosed with sickle cell at nine-months old and knows all too well how attitudes towards the disease have impacted her life. She recalled a time when her grandma described her early symptoms “as if she was boiling like a kettle” before being rushed to hospital. 

“It was in the 1980s and not many people knew what sickle cell was. So, it was very challenging for people to school me about my condition,” she said. “Growing up, it’s been difficult with sickle cell disease because it’s an invisible condition. There’s not much education and information around it – I just knew I was in pain and the cold would trigger a crisis.

Unsickle My Cells UK

Chanel – also the Founder of Unsickle My Cells UK – described herself “as the girl that was always sick” that missed out on parts of her childhood; not being allowed to run or to go swimming. She frequently dealt with moments of needing breaks or experiencing shortness of breath. 

After years of dealing with her condition, she doesn’t equate the lack of knowledge or negligence of the disease to solely white professionals, but also believes that black people have their part to play as well.

“There is Black Lives Matter, but there are also individuals. There was a case where I was admitted into hospital, and I was asleep all day and a black nurse told me I was lazy when I have sickle cell and chronic fatigue. I was on a drip and my child was not with me – how is that meant to make me feel?” she said.

Earlier this year, the All-Party Parliamentary Group for Sickle Cell and Thalassaemia released a report into the impact of the COVID-19 pandemic on the sickle cell community.

Published as Cast Aside and Forgotten, the research highlighted the NHS’s failure to include other genotypes of sickle cell disease, and only Homozygous sickle cell disease – a move that was consistent in silencing those living with sickle cell.

Alinta Sara, Researcher and Coordinator at the Sickle Cell Society, said that the “patient’s voice” remains even more imperative during this time. 

I think sometimes patients are not taken seriously because they know more sometimes than the nurse or the doctor,” she said.

“With the disease, the way you react can be different from one patient to another patient. So, the patient’s voice has to be taken into account and I think there is a lack of that within the NHS.

Of course, other aspects ike racism, stigma, discrimination is also at the heart. And again, our own our own community needs to know more about sickle cell, because I think even within the black community, people still don’t necessarily know how serious it is.”

Orin concedes that although black communities across Britain are justified in their distrust of institutional systems, particularly those related to medicine as largely witnessed with the low numbers of vaccine intake, he believes that it is crucial for black people to come together and support their own in a world that already doesn’t.

The deaths of Richard Okorogheye and Nathan Evans Smith continue to highlight these systemic failures and the challenges the disease poses to mental health, but also the need to prevent others like it after its stops trending for our community.

United By Blood Campaign

The United By Blood project was announced in the aftermath of Nathan’s death and created in his honour; it is a new coalition of black organisations that are spearheading a blood donation campaign to create change for sickle cell patients like Nathan.

The campaign encourages black people aged 17-66 register to donate blood and book a blood donation appointment at one of the eight sessions taking place in London, including Tottenham Hotspur Stadium and other major cities such as Bristol, Birmingham and Manchester.

The blood donor drive will take place on Saturday 19th June for World Sickle Cell Day and Sunday 20th June which marks Father’s Day.

“We call this a silent crisis in our community, and we shout ‘Black Lives Matter,’” said Orin. “So, now is our chance to prove it.”

To register to donate blood and attend the United by Blood: Donating in memory of Evan Nathan Smith blood donation sessions, potential donors can call the priority booking line on 0300 303 2737 or visit NHS Blood and Transplant to book an appointment.

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