Sickle cell patients face life-threatening risks due to the cost of living crisis – here’s why

black woman in a yellow top

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Strong Women


Sickle cell patients face life-threatening risks due to the cost of living crisis – here’s why

By Natalie Morris

3 years ago

4 min read

Everyone’s starting to feel the pinch, but for people living with sickle cell disease, the toss up between heat-or-eat is a matter of life or death.

“If I get too cold this winter, I’ll end up back in hospital,” says Laurel Brumant-Palmer, a 58-year-old Black woman living with sickle cell disease. “It’s just not an option. I won’t put myself through it.”

Turning 60 next year, Brumant-Palmer never expected to reach this milestone. After being diagnosed with the chronic blood condition when she was just three years old, she spent months in hospital beds, repeatedly experiencing the extreme pain caused by a sickle cell crisis. Doctors gave her a 50% chance of survival, and she never really expected to make it to adulthood. 

“My childhood consisted of being in chronic pain, constantly,” she explains. “It was incredibly traumatic. I was barely living, I gave up on having a future. I felt like I was just waiting for death.”

As the decades passed and treatment improved somewhat, Brumant-Palmer turned a corner; she finally felt she could live a more fulfilling life with sickle cell. She got married, had a family, found a part-time job working in a school, and even studied for a graphic design degree in her 50s. But now, her hard-fought security is under threat as the cost of living crisis squeezes her resources from every angle. 

Why is the cost of living crisis so dangerous for people with sickle cell?

“For people with sickle cell disease, winter is the enemy,” she tells Stylist. “This disease does not like the winter, it does not like the cold. We have to have warmth. So the gas and electric bills are a huge concern for me right now.

“At work, I hear people talking about not putting their heating on until December, putting more jumpers on, or just bearing the cold. I am not prepared to do that. I am not prepared to have a [sickle cell] crisis because I can’t afford to stay warm. It causes a massive amount of anxiety for me.” 

A sickle cell crisis is severe and can be incredibly distressing. During a crisis, blood vessels to part of the body become blocked. The pain is intense, and it can last from a few days to weeks at a time. The lack of oxygen experienced during a crisis can cause damage to your organs and your bones, leaving patients with an array of complex health complications to navigate.

The frequency of these bouts of pain varies for each person, some may have them every few weeks, while others may only have one bad episode per year. There are a number of things that can trigger a pain crisis – including dehydration and strenuous exercise – but cold weather is another known trigger.  

For people with sickle cell disease, winter is the enemy. I hear people talking about putting more jumpers on, or just bearing the cold, but I am not prepared to have a sickle cell crisis because I can’t afford to stay warm

Laurel Brumant-Palmer

“It’s to do with blood viscosity,” Nigel Nicholls, UK general manager at Global Blood Therapeutics tells Stylist. “Sickle cell patients are urged to stay warm because that keeps your blood less viscous, less ‘sticky’. The stickier your blood, the more acute the pain crisis will be.”

While many people will be facing the horrible dilemma of heat-or-eat this winter, this bleak situation takes on a whole new dynamic for people like Brumant-Palmer who also have to factor in the need to stave off extreme pain. 

“When you experience the pain, it’s like all consciousness leaves your body,” she explains. “I have had two children and I would rather give birth to 25 more children than have a crisis, because I know that after giving birth, the pain is over. With sickle cell, you can always have another crisis, and you might be left with kidney damage or heart damage. It never leaves you. It’s always there.” 

Why the cost of living crisis disproportionately affects people with sickle cell

Fears over sky-high heating bills aren’t the only way the cost of living crisis will disproportionately damage the sickle cell community. Many people living with this illness are already on the back foot financially because the condition limits how much you can work and, subsequently, how much you can earn. Sickle cell disease can incapacitate you for weeks at a time, forcing people to take extended sickness breaks or even lose their jobs. 

Chronic illness leads to thousands in lost earnings

New data has revealed just how significant this financial impact is. The UK study, by Global Blood Therapeutics, a part of Pfizer, revealed that living with sickle cell disease (SCD) reduces productivity and decreases potential future income by more than £500,000.

The study, which analysed the lives of 9,272 SCD patients, found people lost the equivalent of three weeks’ average UK earnings per year due to appointments, acute crises and organ damage. Patients who experienced a ‘loss of future income event’ – ranging from unemployment to early death – lost out on £30,500 each time, amounting to hundreds of thousands over a lifetime.  

Many sickle cell patients are on low incomes

Sickle cell disease is the fastest growing genetic condition in the UK and affects approximately 15,000 people – predominantly Black people with African or Caribbean heritage. The condition is chronic and lifelong, and can cause serious complications, impacting the quality of life and leading to early mortality. And yet, people living with this illness say they are not being adequately supported.

Nicholls adds that sickle cell is an illness that impacts a section of society who are already much more likely to be living in poverty or struggling financially: “23% of the sickle cell population are in the 10% lowest band of income,” he says. “This group is already disadvantaged. So the additional impact of the cost of living crisis is completely devastating.”

Medications are expensive – and patients want that to change

Another financial pressure for people living with sickle cell is the challenge of paying full price for all prescriptions and medications. Nicholls says the government has a ‘real opportunity’ to reverse these charges and help ensure that people with sickle cell are not disadvantaged even further.

“This debate is really timely,” he adds. “I’m hoping ministers get really activated about it, because this change is long overdue.”

Last year, the government refused to add sickle cell patients to the free prescriptions list despite pleas and petitions from campaign groups. When asked about the fees in a parliamentary debate, then health minister Maria Caulfield said: “Most patients are probably young, of working age, and have to pay for their prescriptions but around 89% of all community prescriptions are free. 

Person buying a prescription

Credit: Getty

“For those with long-term conditions, such as sickle cell, there are the pre-payment certificates covering prescriptions for around £2 per week, no matter how many items they have to order.”

The certificate she is referring to has to be applied for and costs over £100 per year. Many patients don’t know about this system as it isn’t broadly advertised, which makes it less accessible. 

Sickle cell and racism: is prejudice to blame for poor treatment?

Brumant-Palmer says she is one of the lucky ones. She has a stable living situation, a caring family, and good support systems in place. She worries about the people who will not be able to navigate the spiralling costs of heating, prescriptions and loss of income, those who will be forced to make impossible decisions this winter.

“More people are going to get sick, that is the reality,” she says. “As a result, more people will have to deal with mental health issues, because it’s going to affect their mentality. At my sickest, I suffered with depression, I struggled to see the point in living. It scares me to think that more people will have to feel like that.

“I think the government thinks it’s a joke, to be quite honest. They clearly do not take it seriously, and they are not giving us the support we desperately need. The sad reality is that racism is part of the reason why free prescriptions are not being funded, why we are not getting that help. Discrimination is alive and kicking.”

The sad reality is that racism is part of the reason why free prescriptions are not being funded. Discrimination is alive and kicking

Laurel Brumant-Palmer

A landmark study into sickle cell treatment in winter last year found exactly this. The No One’s Listening report revealed that racism in the NHS is putting sickle cell patients’ lives at risk. Patients reported being treated with disrespect, not being believed or being assumed to be “junkies”, and having their pain disregarded and not treated as a priority even in emergency circumstances.

In light of the stark findings, researchers’ recommendations for MPs included the implementation of charge-free prescriptions for sickle cell patients and new guidance for A&E staff to ensure sickle cell patients are prioritised for treatment during medical emergencies. However, there have so far been no changes to the prescription charges.

Right now, people living with this chronic condition are facing converging crises. On top of rising costs, NHS blood shortages could also impact the quality of care people with SCD receive. Earlier this month, the NHS put out an urgent call for more blood donors of Black heritage as new figures revealed a record 250 donations are now needed every day to treat sickle cell. 

Demand for blood to treat this rare condition has risen by 52% over the past five years and is projected to continue to rise.

Results from the UK Sickle Cell Health Awareness, Perspectives, and Experiences Survey show that SCD places a “significant burden” on all aspects of the lives of people living with this devastating condition, and also impacts their caregivers. Experts say effective disease management to prevent hospitalisations and improve quality of life is crucial – as well as a broader understanding of the disease, symptoms and implications across all sections of the healthcare system.

“Sickle cell is not new, we have known about the gene that causes this illness since 1910 – and yet there has been precious little development in terms of support from the government and in new treatments to improve patients’ lives,” says Nicholls.

“In parliament, other illnesses are discussed and debated much more frequently than sickle cell ever is, but with 15,000 people affected, it is the most common rare illness in the UK. It’s time we start making sure those voices are heard.”

For sickle cell support, check out the Sickle Cell Society.


Images: Getty

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