People living with sickle cell disease face substandard care as its treatment significantly lags behind advances relating to other genetic disorders such as cystic fibrosis, a report has found.
The study, commissioned by the NHS Race and Health Observatory and carried out by researchers at Imperial College London, analysed various measures of care for sickle cell disease between 2010 and 2024, including clinical trials, approved drugs and reviews of existing studies.
The findings indicated that sickle cell care across the UK does not have parity with other genetic disorders, such as cystic fibrosis, with there being only 0.5 specialist nurses per 100 patients for sickle cell, compared with 2 per 100 for cystic fibrosis.
The report also found that there is 2.5 times more research funding for cystic fibrosis than for sickle cell, meaning the former has more treatment options and breakthrough drugs than the latter.
Evidence of substandard care for people with sickle cell was also found, with 20% of babies with the condition not being seen by a specialist by three months of age, despite the NHS screening programme guidelines that 90% of babies should be seen by this milestone.
Prof Habib Naqvi, the chief executive of the observatory, said sickle cell care “significantly lags behind” that for other rare genetic conditions.
He added: “These inequalities are stark and, despite being a common genetic disorder, sickle cell has endured years of inadequate attention and investment that has resulted in the experiences we then see play out for people living with the condition.
“We do highlight the stark inequalities that exist for people with sickle cell in comparison with other rare conditions, but we also offer evidence-based solutions for meaningful change.”
Source: The Guardian, 19 June 2025
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