Having Sickle Cell Disease has always been expensive. Now, the cost of living crisis has added an extra challenge to the mix.

As the cost of living crisis worsens, those with rare and chronic conditions will suffer the most.

Overarching health and social inequalities have historically affected patients with long-term conditions unevenly. Individuals with a range of long-term conditions, from rare blood disorders, mental health issues and more, have long faced the impossible task of balancing care needs and keeping pace with high care and medication bills.

Their challenges will only worsen as energy bills are due to rise in October, and access to benefits and wages become more impenetrable. As many become more unable to afford basic amenities such as food, heating and electricity, health professionals fear that patient health will deteriorate further.

This is particularly true for the Sickle Cell Disease (SCD) community, who have been unevenly affected by health and social inequities.

Even before the cost of living crisis, people with SCD have been faced with substantial costs. Research shows that ‘prior to the cost of living crisis, life was already £583 more expensive each month for disabled adults than for non-disabled adults.’ A substantial portion of this owes to transport to and from appointments, heating the home to minimise pain, and running at-home support machines.

On top of these costs are the far deeper rooted – and harder to pin down – expenses such as being unable to work and struggling to access the benefits they deserve. Patient Sophie from London has struggled with being able to balance work, health and family life, due to her physically debilitating condition:

“Because a lot of people don’t understand how much Sickle Cell Disease can affect you physically, I have struggled with the lack of understanding with previous employment. People at work have not understood that there are some days where I could not work because of my pain levels. Because of this, me and my family have had to rely on benefits at times where I haven’t been able to find work”

For people with SCD, these issues are compounded by institutional racism and the subsequent challenge of having their voices heard by the public, health professionals, and government.

Labour MP Janet Daby, chair of the all-party parliamentary group on sickle cell and thalassaemia, recently penned a stark warning about the health risks of government inaction on the current crisis:

‘For some illnesses like Sickle cell disease, if you do not have sufficient warmth it could bring on a sickle cell crisis and can lead to hospitalisation, organ damage and at its worst, death.’

If we do not act now, the consequences will be dire.

Impossible choices

This winter will be challenging for many, but even more so for those with Sickle Cell Disease. The imminent price cap increase will make energy bills exceptionally expensive – the average household will soon be paying £3549 per year for dual fuel.

With staying warm forming an essential part of managing SCD and avoiding crises, these hefty costs will be unavoidable for patients as the colder months creep in

Like many people with SCD, Reia uses heat to help manage her pain. The heat from things like her electric blanket help regulate temperature and widen blood vessels, which in turn relaxes muscles. However, with electricity costs spiralling, patients will have to make unimaginable decisions on where to spend their money. According to Reia, members of the SCD community have had to rely on each other, instead of health institutions, to provide some relief and comfort.

“During tough times, I’ve experienced my fellow sickle cell warrior’s asking to support with borrowing pain relief. This is due to the lack of strong enough pain relief because their doctor srefused to prescribe them, or their inability to afford a prescription refill.”

Some government support is available to help those with disabilities through the cost of living crisis, but having SCD recognised as a disability is often difficult. The invisible nature of the condition means it is often not taken seriously, and this issue is compounded by the institutional racism that patients face at every stage of their healthcare journeys.

“Sickle cell is not seen as a “first class disability”. When petitioning for support or help from the government, it becomes a battle in proving the seriousness of the illness. When I applied for a disability payment support they turned me down many of times as my illness wasn’t deemed to fit in the disability status. After two appeals and taking my case to court, the DWP only then granted my illness to fit in the “disability category”; despite having all evidence from hospital and specialist doctors beforehand. This situation is so common within our community due to our illness being invisible”

Navigating the crisis

SCD patients were placed on the extremely vulnerable list during the pandemic. Despite the major impact the condition has on their lives, members of the SCD community are unable to claim free prescriptions on the NHS.

During a landmark parliamentary debate in 2021, MPs across the country contested the lack of free prescriptions available for the SCD community. Government officials questioned health minister Maria Caulfield as to whether prescription exemption charges would be extended to SCD patients. Sadly, Caulfield confirmed that no such plans were made for this to take place.

This news followed the publication of the No One’s Listening Report, which outlined the unavoidable deaths and failures for care for patients. In tandem with recent statistics published by Health Equity in England and The Social Metric Commission, the report reveals the striking depth of care deprivation that many members of the SCD community face. According to both reports, up to 45% of Black, Asian and Minority households live in poverty; of this population group, at least 15% require prescriptions for long-term conditions like Sickle Cell Disease.

Daniel, a patient from the SCD community who is active in advocacy work, had hoped that the report would resonate with healthcare leaders; and inspire them to do more to address the every day needs of his fellow patients. However, he feels that unless more is done to accommodate further support for the SCD community, more and more people will not be able to access medications they need:

‘Living with SCD is costly enough. However, the rise in medications will prevent many of us from living our lives to the fullest. We have families to support, and children who need us to be present for them. If we lose access to prescriptions, just because we have to choose between affording heating or care, this will be devastating for many.’

Given that a significant portion of this demographic lives in poverty and require prescriptions, it is striking that current Sickle Cell Disease treatments do not fall under the 89.7% of medication items are dispensed free of charge.

As an alternative, a Prescription Prepayment Certificate (PPC) can help patients get prescriptions for less, but many people are not aware that PPCs exist. Reia paid for multiple prescriptions every month for years before finding out through Sanius that a PPC was available.

“During hospitals stay’s you are entitled to be discharged with a 30 day supply of medication. As a sickle cell patient I have frequent stays and unfortunately had to abuse taking the discharge drugs amount just to support me for the upcoming months as monthly prescriptions are very expensive . For example, if I have 2 overnight stays I will be entitled to two rounds of 30-day supply of medications, which saves me £180”

A PPC for a whole year costs £108.10 and would save someone with 4 monthly prescriptions more than £340 per year. £30.25 3-month PPCs are a welcome alternative for those who cannot afford the larger upfront fee. When prescribing a large number of prescription medications, it would be prudent for GPs to mention these options to patients – especially now.

People with SCD are, in theory, eligible for financial support from the government in the form of PIP (Personal Independence Payments). However, not everyone gets accepted. It’s often a fight to get even the lowest rate offered, and only a fraction of people with SCD in the UK have been able to access the higher rate of PIP.

On top of PIP, people with SCD may also be eligible for ESA (Employment Support Allowance) if they are unable to work. However, compulsory regular appointments make this benefit hard to keep for those who are frequently impacted by sickle cell crises.

If a patient’s application for PIP or ESA has been turned down and they believe this should not have happened, they are entitled to appeal this decision.

This support is a start, but there is much more to be done.

While patients are facing all these challenges, healthcare providers are also struggling to obtain the funding they need to deliver the care that patients urgently need. On top of the cost of living crisis, the current leadership contest in government has stalled progress at a time when change is urgently needed in the community.

The fight is far from over

Things are changing for people with SCD, but not fast enough. The change that we have seen did not come easily and improving care further will be a constant battle. Experiences like Reia’s are not uncommon, and are a stark reminder that there is more that needs to be done to address health inequalities for this patient cohort.

“Having Sickle Cell Disease, we are known as being “ drug addicts”. Whilst being admitted to A&E I have experienced complete neglect of nurses as I’ve asked for more pain relief. I got admitted with a back crisis which means my mobility is completely restricted, I cried and pleaded for a nurse to give pain relief. The nurse bell rang for a full 65 mins, before the nurse finally reached me. When she arrived, she only told me to “wait”.

As I continued to cry in agony, it was the hospital staff cleaner who was there to comfort me as she saw the pain in my eyes. The cleaner ended up getting me a nurse to support with extra pain relief.”

We’re proud to be a part of this fight here at Sanius Health, and we believe that together this community can make a massive difference.

This National Sickle Cell Disease Awareness Month, Sanius Health is supporting the community and clinicians by spreading awareness of the state of SCD care in the wake of the pandemic. We are celebrating the bravery and commitment of all sides of this community by shining a light on successful progress and the things that still need to be done.

Community initiatives like ours have formed an essential part of the change we have seen so far, but they are not enough on their own. Government support cannot come soon enough.