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Sickle Cell Disease exposes racial health inequalities

This article is over 2 years, 6 months old
The announcement of the first new treatment for Sickle Cell Disease for 20 years is good news. But it also tells us a lot about systemic racism in healthcare
Issue 2776
Health workers joined protests during the Black Lives Matter movement
Health workers joined protests during the Black Lives Matter movement (Pic: Flickr/ Joe Flood)

The Covid pandemic laid bare the way racial inequality impacts on health in the starkest possible way—the death rate. But the virus is far from the only indicator of this problem.

News last week of a new treatment for Sickle Cell Disease, which affects red blood cells, has been rightly hailed as “ground breaking”.

In Britain it primarily affects those of African and Caribbean heritage.

But many are asking why something that affects so many, in devastating ways, attracts so little attention from big drugs firms and the NHS.

“Sickle Cell is something that has been known about for over 100 years, but there has been very limited innovation and research and development into modifying treatment. Why is that?” asks Sickle Cell charity leader John James.


“If this was the biggest blood condition in Britain but it was affecting predominantly white people, would it still be the same?”

James’s point is well made.

Compare the amount of funding there is for new treatments for Cystic Fibrosis, which affects just over 10,000 people in Britain, with Sickle Cell, which affects up to 15,000.

Research into Cystic Fibrosis garners more than 30 times as much financial support as Sickle Cell disorders. And lack of research is not the only problem.

A shocking lack of training for NHS staff means that hospitals are often a place of last resort for patients—somewhere to go only when all other methods have failed.

Those with Sickle Cell Disease suffer repeated crises, which involve intense pain and muscle weakness. It can also lead to organ failure.

Often only the strongest pain relief is effective while patients wait for life-saving blood transfusions.

But Sickle Cell Disease is often characterised as a “disease of pain”, rather than one of organ failure and premature death. So all manner of prejudices find their way into hospital treatment.

The racial stigma that associates young black people with drugs is one of the most powerful.

Many patients report being treated with suspicion when they ask for pain medication and say sometimes they are denied proper treatment.

“I’m not quite sure where this theory came from that Sickle Cell patients are lazy lying drug addicts, but it’s so untrue and so damaging to us,” says Aliya, on a blog for the Sickle Cell Society.

It undermines what we go through and hugely affects our care and treatment.

Report finds NHS has a problem with institutional racism
Report finds NHS has a problem with institutional racism
  Read More

“When I would go into A&E, nurses would constantly watch me to see if I really was in crisis.

“If I went to the toilet, if I went on my phone, even if I sat up they would say, ‘You must be feeling better’.”

Very few medical staff get quality training in Sickle Cell and related diseases.

A recent survey of student nurses and midwives revealed that 71 percent had not had any formal teaching time on the disease.

And, of those that did, only 17 percent of nurses had a session of one hour or longer.

However, there are signs of change. Over many years campaigners have demanded a transformation in the way the health service relates to Sickle Cell patients. And they have won significant victories.

The improved guidelines for care of patients are one result of their efforts. But it will take a far wider fight to address the array of racial disparities that Covid has revealed.

Here we are helped by the way the Black Lives Matter movement galvanised so many thousands of people, including health workers and patients, in a fight against systemic racism.

Understanding unequal health as part of the wider part of pattern of discrimination, and making them a focus of protests, is vital.

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