New Sickle Cell Treatment and the Curse of Remembering

It was a frosty, autumnal morning in October, about 20 minutes before 10am. I remember it clearly because it was before the usual What’s in the News session at Intent Health held Thursday 10am, every fortnight. It was a familiar routine – source a news story from within the broad spectrum of health, share during the session and for the next hour discuss with the team. Digging through the swamp of news stories and deciding which was fit to share is itself a chore and it doesn’t help that, unsurprisingly, COVID-19 still dominates the health news space. But on this day was something different – oddly so, you might add. My simple Google query returned the headline: “NHS announces deal for life changing sickle cell disease treatment”. This headline sufficiently triggered a variety of emotions in me and in doing so defined the course of this piece.

Breakthroughs in medicine are undoubtedly a source of joy and relief to many, especially when they provide a cure to conditions affecting a large number of people. Having lost a dear friend to sickle cell disease (SCD) in September of 2010, I could relate to the promise that this headline held for individuals and families managing the pain of the disease. Timothy was a young man whose jubilant energy and infectious smile masked the excruciating pain his sickle cell crises frequently subjected him to. As one of a pair of dizygotic (fraternal) twins, he wanted to live life to the fullest like his twin brother, Titus, who was fortunately not a sickle cell carrier. And boy did Timothy live his life to the fullest!

As schoolmates back in boarding house, he participated in several extracurricular activities and was member of the school’s music club, the drama unit and choir of the Catholic students’ fellowship. It did not come as a surprise when he proceeded to study English and Literature for his bachelor’s degree; we knew his flair for Shakespeare had to take life in some way. So, on that fateful morning of September 15th when Timothy drew his last breath, I wished there had been a more effective treatment to save my friend’s life.

Although, for Timothy, this headline was 11 years late, I was excited to read it nonetheless. Sickle cell disease as you may or may not already know is a hereditary condition prevalent in people of African and African-Caribbean heritage. Those who experience the disease produce unusually shaped red blood cells that can block blood vessels and cause them problems including severe pains often referred to as a crisis. Usually, patients are given morphine to control the pain and prevent organ failure which can be fatal. Unfortunately, for decades Black people suffering SCD in the UK have endured discrimination and even the flippant dismissal of their suffering from within health institutions.

Grace Redhead, in her 2021 treatise on medical activism and race in the National Health Service (NHS), unpacks the sad experiences of sickle cell disease patients in the NHS. She narrates her encounter with Lola Oni (a SCD patient) and a specialist nurse consultant, both of whom witnessed the death of a 15-year old SCD patient in a South London hospital in the 1980s. Lola details how the girl’s plea for painkillers were dismissed by the nurses on duty, eventually leading to a fatal brain haemorrhage. Redhead also recounts the testimony of another Black SCD patient, Francis, who explains how SCD patients that look like him are often dismissed by physicians as “druggies” exhibiting symptoms of their addiction.

“for decades Black people suffering SCD in the UK have endured discrimination and even the flippant dismissal of their suffering from within health institutions.”

Redhead asserts that this frequent accusation of drug addiction against SCD patients draws on a wider societal stereotyping of Black communities. But the trend also parallels another stereotype that has seen Black people accused of defrauding the ‘welfare state’ and, in the instance of SCD patients, serving their addiction to painkillers and/or seeking undeserved medical attention. Perhaps worst of all, is the snide perception held by some healthcare workers that Black people have a low pain threshold. This expressed perception implicitly sets standards of pain tolerance that Black people must conform to. Not only is this practice in bad taste but is reminiscent of the slave era, when Black people were subjected to hard labour on the mocking assumption that they had high endurance for pain.

Admittedly, some ground has been gained regarding understanding SCD and appropriate care for patients. Over the years some practitioners – especially those from minority ethnicities with SCD – have led the way for a change in the status quo. In fact, it was in 1979, that Elizabeth Anionwu, a British-Nigerian nurse, helped to establish the first nurse-led UK Sickle & Thalassaemia Screening and Counselling Centre in Brent. She would go on to develop a framework for nursing staff for the care of SCD patients.

However, with persistent new reports evidencing institutional racism within the NHS, as well as a history of paternalistic attitudes towards SCD patients, it is clear to see why headlines about new treatment for the disease do not imbue confidence amongst the Black community. It is, therefore, imperative for healthcare institutions, and society as a whole, to embark on a critical introspection and realise that discrimination in all its forms needs to be stamped out, not just because it’s the right thing to do, but because eliminating discrimination makes healthcare more effective.

Indeed, as a person with family members on the sickle cell spectrum, the new medicine – as well as other ground-breaking new treatments – may be life changing. But same is true for experiences of racism when accessing healthcare.

“As a young Black male, the trauma of dealing with discrimination in a supposed institution of compassion and care is often difficult to express. I often fear visiting the hospital because I do not know what fate awaits me there. Will I be looked at as a ‘bogus’ patient scheming to access state-funded medical care or just another trivial complainer? What’s for certain, is that no one should have to worry about this when accessing healthcare services, and yet it remains a constant in the lives of SCD patients, their families, and Black people, more generally. So, you will understand if my joy at the news of this new treatment is somewhat subdued. If our healthcare system continues to undermine the specific needs of Black people, such new treatments, however innovative, run the risk of failing to deliver on their promise. That is something that troubles me and we must make efforts to correct it.”

Martin C. Agunwa
Junior Account Executive
Intent Health