"Sickle Cell patients already face medical biases. The least they deserve is free prescriptions"

After the government rejected calls for such a move, community initiatives can’t continue to be the only answer to survivors’ persisting inequalities
A few weeks ago, during a landmark “Treatment of Sickle Cell” parliamentary debate, Maria Caulfield, the health minister who leads on Patient Safety and Primary Care, confirmed there were no plans for sickle cell patients to receive exemptions to their prescription charges, making their NHS treatment free.

Answering Labour MP Bell Ribeiro-Addy’s question on whether prescription exemption charges would be extended to sickle cell patients, Caulfield responded: “Most patients are probably young, of working age, and have to pay for their prescriptions but around 89 per cent of all community prescriptions are free.
“For those with long-term conditions, such as sickle cell, there is the pre-payment certificates where, for around £2 per week, no matter how many items they have to order, they’re covered by that certificate.

“That is a system that is in place that often patients aren’t told about.”

If the harm that comes with this approach isn’t already evident, that’s probably because there’s still a glaring lack of awareness when it comes to sickle cell – and treatments for it.

Sickle cell disorder (SCD) is classified as a “medical emergency”, putting it in the same category as heart attacks and strokes. It’s the world’s most common genetic blood condition, characterised by deoxygenated cells becoming rigid, sickle-shaped – like crescent moons – and sticky. These cells block capillaries, causing excruciating pain. In addition to this, a wide range of complications can result from these disorders, many of which are made worse by things like poor housing and nutrition, environmental irritants and limited access to recreation and exercise – all of which low-income Black British patients typically experience.

Though some white people have SCD, it predominantly affects people of African and Caribbean heritage. Today, there are more than 15,000 people living with SCD in the UK, and only five approved treatments. For context, the prescription exemption list covers genetic illnesses like cystic fibrosis, which has 10,500 patients (93 per cent of which are white) and 511 approved treatments.

What Caulfield and others who don’t see the urgency of giving sickle cell patients exemptions conveniently leave out when they advocate for pre-payment certificates (PPC) is that few patients are aware of what it is in the first place, in addition to the fact it must be applied for. Not only this, but it can cost up to £100. The prescription charge in England is £9.35 per item, and a PPC costs £30.25 for 3 months or £108.10 for 12 months. This failure to explain these costs, as well as the need to improve awareness of these issues among clinicians, was a sorely missed opportunity to relieve people of this financial burden.

The parliamentary debate came after the publication of the “No One’s Listening” report in November 2021, co-authroed by the All-Party Parliamentary Group (APPG) on sickle cell and thalassaemia, which details how sickle cell patients grapple with racism and medical negligence in the NHS that is placing their lives at risk.

It was prompted by inquiry calls for sustainable improvements in training, attitudes, treatments among other things, in order to prevent future deaths like those of Evan Nathan Smith and Tyrone Airey, both of whom died due to widespread lack of adherence to national care standards, negligence, poor management, low awareness and recognition of sickle cell among healthcare professionals, clear examples of inadequate training and insufficient investment in sickle cell care – all of which are underpinned by racism. There are countless examples like these.

Since the APPG report was published, Health Education England has made improvements to its curriculum and there are now modules for trainee nurses on sickle cell and thalassaemia as core competencies. In addition to this, in October 2021, the NHS announced a new drug, Crizanlizumab, the first treatment for sickle cell disease in over 20 years. If the Government can achieve these milestones when it comes to sickle cell disease, it can certainly do more. The question is, why is it choosing not to?

As many have contended, the demographics of sickle-cell disease patients have held it back from the research it needs, a common factor in medical racism. Sickle cell patients in the UK have long depended on community mobilisation and organising to better their health needs.

Clear examples of this span from the research, screening programmes, exhibitions, advocacy and educational outcomes led by The Sickle Society. Not only is the charity at the forefront of supporting blood donation campaigns but it also sits as part of the Prescription Charge Coalition, a group of 51 organisations calling on the Government to scrap prescription charges for people with long-term conditions in England. The petition set up by sickle cell patient Anusjka Regis-Etumnu, and backed by the Sickle Cell Society, has called for the blood disorder to be added to the prescription charge exemption list and has been signed by over 20,000 people since July 2021.