Left Behind: New Report Reveals Stark Inequalities in Sickle Cell Care

A landmark review has found that people living with sickle cell disease face stark inequalities compared with those affected by other serious inherited conditions, despite sickle cell being the UK’s most common genetic disease.

The review was commissioned in response to long-standing evidence of deep inequalities in the care of people with sickle cell. While these issues are not new, recent findings have strengthened the case for the long-term transformational change that patients and clinicians have long called for. To support this, the report brings together data, research and lived experience to build a comprehensive picture of where inequalities persist, drawing comparisons with other conditions where useful. This approach aims to inform meaningful, sustained improvements in care, recognising that real change will require the involvement of patients, families, clinicians and the wider NHS.

Graphic Summary of Findings

The study, commissioned by the NHS Race and Health Observatory and led by researchers from the Imperial College London’s School of Public Health and NIHR ARC Northwest London’s Ethnicity and Health Unit, reveals that hospital admissions for people with sickle cell rose by 42% between 2013 and 2022, while admissions for people with cystic fibrosis fell by 41% over the same period. Hospitalisation costs for sickle cell are now twice as high as for cystic fibrosis, yet patients continue to face longer waits, poorer pain management, and fewer specialist staff.

The toll on life expectancy is severe. The median age of death for sickle cell patients is just 47 years, compared with 84 years in the general population.

Behind these statistics are lived experiences of systemic neglect. One in five babies with sickle cell disease is not seen by a specialist within the NHS’s three-month standard. Adults report delays of hours in receiving pain relief in A&E, despite national guidelines requiring treatment within 30 minutes. Many describe being disbelieved or stigmatised as “drug seekers”, compounding the burden of their condition. Access to specialist care is also uneven: there are just 0.5 specialist nurses per 100 patients with sickle cell, compared with two per 100 patients with cystic fibrosis.

The disparities extend beyond clinical care. Research funding per patient stands at £703 for cystic fibrosis and £315 for haemophilia, but only £184 for sickle cell. Charitable support follows the same pattern: the Sickle Cell Society receives, on average, £48 per patient, compared with £1,449 per patient for cystic fibrosis. These imbalances have contributed to far fewer treatment options, with just two NHS-approved drugs for sickle cell in recent years, both now withdrawn, compared with seven therapies each for haemophilia and cystic fibrosis.

Lived Experiences

The report warns that without decisive action, people with sickle cell will continue to face shorter life spans, greater suffering, and eroded trust in healthcare. It sets out six recommendations, including more substantial investment in specialist services, equitable research funding, and embedding patient voices in service design. By applying lessons learned from conditions where outcomes have improved, the NHS has an opportunity to ensure that those with sickle cell finally receive the standard of care they need and deserve.

Read more about the Indicators of inequity in research and funding for sickle cell disease, cystic fibrosis and haemophilia: a descriptive comparative study on the Lancet. Authors: Rutendo Muzambi, Prof Alex Bottle, Daniel Dexter, Cherelle Augustine, Jeannine Josephg, Funmi Dasaolu,  Prof Siobhán B Carr, Carl Reynolds, Ganesh Sathyamoorthy, John James, Frédéric B Piel.