Sickle Cell Patients Face Unequal Care: New Report Highlights

A new report which compares and contrasts disparities found across rare genetic diseases has been published on World Sickle Cell Day, today, 19 June.

Stark findings from the research commissioned by the NHS Race and Health Observatory and carried out by researchers at Imperial College London, explores inequalities in care, funding and research provided for people with sickle cell disorder in comparison with those with cystic fibrosis or haemophilia.

Aimed at NHS health care providers and commissioners, the comprehensive;

“Sickle Cell: Comparative Review to Inform Policy” report will be launched at an in-person event at the House of Lords, coinciding with this year’s World Sickle Cell Day.  Around 50 policymakers, specialists, clinicians, patient advocates, researchers and members of parliament will be in attendance.

Examining evidence spanning the period from January 2010 to December 2024, the report finds evidence of inequalities, sub-standard care and disparities when comparing several areas. Where compared to people with cystic fibrosis or haemophilia, the sickle cell community faces stark disparities across areas linked to funding, healthcare workforce, research, and treatment resource allocation.

Despite broad disparities, which signify systemic bias and discriminatory practice around access to specialist care and research funding, previously highlighted in the 2021 No One’s Listening Report of the All Party Parliamentary Group on Sickle cell and Thalassaemia and the UK Sickle Cell Society, the new report also identifies some areas of progress and opportunities. It calls for sustained investment in specialist care to equate with sickle cell care and level the wider gains seen across cystic fibrosis and haemophilia care.

Sickle cell disorder is an inherited condition affecting red blood cells. People with the condition produce unusually shaped red blood cells that can cause health problems such as anaemia and episodes of severe pain (termed ‘pain crises’). Sickle cell can affect anyone but is particularly common in people with an African or Caribbean family backgrounds.

Historically, people with sickle cell have been impacted by under-resourcing, negative experiences of care, and a lack of specialist knowledge and in-depth research into their condition. This applies both globally and in the UK.

Evidence suggests that a breakdown in trust is having a dire effect on patients with sickle cell disorder. More likely to have poor experiences of hospital care, patients may prefer to manage episodes of severe pain at home. Despite this, hospital admissions for sickle cell rose by 42% between 2013 and 2022.

The report outlines evidence-based recommendations to tackle inequalities by analysis of data across a wide range of indicators, including but not limited to, reviews of literature, research funding, financial resources of charities, scientific publications, clinical trials, approved drugs, dedicated disease registries and online information portals dedicated to awareness for sickle cell, cystic fibrosis and haemophilia.

Across all conditions, analysis was undertaken on hospital admission data in for waiting times, length of hospital stays and estimated costs to the NHS. Survey feedback from patients was captured and used as part of evidence gathering analyses. Six practical and key recommendations for policy, practice, and research are outlined for actionable solutions, driven by the needs for better data, better support for people with sickle cell disorder, and better treatment options.

Other key findings reveal:

• A lack of specialist nurses; with only 0.5 specialist nurses per 100 sickle cell patients compared with two per 100 for cystic fibrosis patients
• Inequalities in research funding – 2.5 times more is spent on research funding for cystic fibrosis than on sickle cell or haemophilia
• Poor hospital experience for sickle cell– in a qualitative study sickle cell patients reported managing an average of seven painful crises without medical help in the past year
• A lack of treatment options with limited access to treatments for sickle cell – only two approved treatments, hydroxyurea and casgevy. Casgevy is only available for up to 50 patients a year
• In a multi-country study, people with sickle cell in the UK had the highest annual hospitalisations for pain crises
• In comparison, GPs cited employing more holistic, follow up care approach for cystic fibrosis conditions with additional, large input from secondary care
• A number of other breakthroughs in cystic fibrosis and haemophilia drug development has led to multiple treatment options.

Professor Habib Naqvi, Chief Executive, NHS Race and Health Observatory, said:

“It’s vital we address the historic lack of investment and sub-standard care that continues to impact people with sickle cell disorder and that we work to ensure there is equity in rare disease care.

“Our report is an excuse remover and highlights a major milestone in highlighting critical issues of sickle cell disorder, as well as outlining practical interventions to address inequalities and care variation. This work sets out clear, evidence-driven recommendations for to improve patient pathways and outcomes for those with sickle cell disorder along with those with other rare conditions.”

Dr Carl Reynolds, Senior Clinical Advisor, NHS Race and Health Observatory, said:

“This report shows in stark detail what many people with sickle cell already know — that they face systemic inequities in healthcare, research investment, and access to specialist services. These are not just oversights; they are consequences of structural racism and neglect. We now have clear, evidence-based recommendations for change. It’s time to act, not just listen.”

The Sickle Cell Society welcomed the publication, saying that the report was clear in the need for better care provision and ‘well overdue’. It also criticised sub-standard care also affecting infants with sickle cell disorder. For babies born with sickle cell in England, between 2010 and 2015, 20% were not seen by a specialist by three months of age. The NHS Sickle Cell and Thalassaemia screening programme states that 90% of babies should be seen by a specialist by three months of age.

John James OBE, Chief Executive of the Sickle Cell Society, said:

“This landmark report makes it impossible for anyone to ignore the existence of deep inequalities faced by people with sickle cell — in healthcare, research funding, and wider recognition.

“We are proud to have contributed to this important research, alongside the Cystic Fibrosis Trust and the Haemophilia Society, which powerfully reflects the lived experiences of our community and sets out clear recommendations for long-overdue change.

“The findings are sobering. It is unimaginable that these disparities have, beyond all reason, continued for so long. However, by analysing how other long-term conditions are supported and resourced, it is clear to see the tangible difference that investment in healthcare makes.

“We hope this report enables meaningful action to address these disparities and raise the standard of sickle cell care – making it fairer, more consistent, and grounded in respect and dignity for both those living with the condition, and the professionals who care for them.”

Sickle cell is now one of the most common genetic disorders in the UK.

Dr Frédéric Piel, epidemiologist, School of Public Health at Imperial College London, said:

“Stories from people with sickle cell disorder about the challenges that they face in managing their condition and getting the help they need are often heartbreaking. I believe that research can help reducing some of these challenges, but we need reliable data, adequate resources and more awareness about the condition. Hopefully, our recommendations will help to move in these directions.”

Dr Rutendo Muzambi, who conducted the research within the School of Public Health at Imperial College London, added:

“Our work quantifies evidence of inequalities affecting people with sickle cell disorder, which seem to be partly the result of racism. There needs to be greater investment into sickle cell disorder so that these patients receive the same level of care as people with other, similar conditions. Our report sets out evidence-based recommendations to address these inequalities and ensure a better quality of life for patients.”

Sickle cell is now one of the most common genetic disorders in the UK.

In another report into rare disease research across the UK, 2016 to 2021, cystic fibrosis received the second greatest number of awards (140 awards) funded by the Association of Medical Research Charities (AMRC). Both sickle cell and haemophilia did not feature in the top 30 rare diseases awarded funding.

David Ramsden, Chief Executive of Cystic Fibrosis Trust, said:

“Cystic fibrosis is a life-long and life-limiting condition without a cure, but real progress has been made in care and treatment over the last few years, driven by specialised care from multidisciplinary teams and high-quality research. It’s vital that conditions, like sickle cell disease, receive the resources needed for research, care, and treatment to ensure everyone can live a life unlimited by their condition.”

Kate Burt, Chief Executive of the Haemophilia Society, said:

‘This report highlights disturbing disparities in care which must be addressed. As a charity which also supports people living with rare genetic disorders, we appreciate the challenges around funding and dedicated research, but this is no excuse for substandard care and support. We hope this report results in meaningful change which leads to better treatment and improved quality of life for people with sickle cell disorder and other rare, inherited conditions.’

Researchers also found, of 387 research grants awarded by NIHR, UKRI and Wellcome between 2010 and 2023, 73.6% were awarded on cystic fibrosis, 19.4% to sickle cell and 7.0% to haemophilia.

In total, this research funding to all three conditions amounted to £182,448,399 over the 14-year study period,  £107,323,136 was devoted to cystic fibrosis (58.8%), £40,798,305 (22.4%) to sickle cell and £34,326,958 (18.8%) to haemophilia.