Research commissioned by the NHS Race and Health Observatory found a number of inequalities in care, funding and research provided for people with sickle cell disorder in comparison with those with other genetic disorders cystic fibrosis or haemophilia.
The report, published in June, found two and a half times more is spent on research funding for cystic fibrosis than on sickle cell disease or haemophilia.
The data also revealed many patients with sickle cell disease had poor hospital experiences - a qualitative study found that on average, sickle cell patients reported managing seven painful crises without medical help in the past year.
This comes after six-year-old Shen’iyah Green died from sickle cell disease because doctors failed to recognise complications with her condition, an inquest heard earlier this month.
Shen’iyah died less than three hours after being sent home from North Middlesex University Hospital A&E with a “stomach flu” diagnosis in 2019.
An inquest found her cause of death was splenic sequestration – a rare complication of sickle cell disease which occurs when a large number of sickled red blood cells get stuck in the spleen.
There was a 42 per cent increase in hospital admissions for sickle cell disease between 2013 and 2022
Dr Carl Reynolds, senior clinical advisor at the 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.”
Although the study found many inequalities in sickle cell research and treatment, a new gene therapy for sickle cell disease called Gasgevy was approved by the NHS in January, which works by editing the faulty gene in a patient’s own stem cells. The NHS estimates around 50 people a year with severe sickle cell disease will receive the treatment.
Sickle cell disease disproportionately affects those with African and Caribbean heritage, and it has become the fastest-growing genetic condition in the United Kingdom.
The disease works by causing red blood cells to form into sickle or crescent shapes, which then become stuck in the blood vessels, causing agonising crisis episodes, or long-term complications such as organ damage and stroke.
Many people suffering with the disease frequent blood transfusions in order to stay alive.
Here’s everything you need to know about the disease.
What is sickle cell disease?
Sickle cell disease is the name of a group of inherited health conditions that affect the red blood cells, with the most serious type being sickle cell anemia.
Those suffering from sickle cell disease produce unusually shaped red blood cells which can cause problems because they do not live as long as healthy blood cells and can block the blood vessels.
World Sickle Cell Awareness Day
World Sickle Cell Awareness Day was held on June 16, 2025
The disease is a serious and life-long health condition but it can be manageable with regular treatment.
What are the symptoms of sickle cell disease?
Those born with sickle cell tend to have problems from early childhood, but some children have few symptoms, and can lead normal lives most of the time.
The main symptoms of sickle cell disease are:
Other issues can include delayed growth, strokes, and lung problems.
How do you treat sickle cell disease?
Sickle cell disease is a life-long illness which requires ongoing treatment from a number of specialist healthcare teams, often provided at a sickle cell centre.
Those with the illness also need to take care of their health, by avoiding triggers and managing pain.
A number of treatments for sickle cell disease are available. According to the NHS, these include:
The only known cure for sickle cell disease is a stem-cell or bone-marrow transplant, but they’re not frequently carried out due to the risks.
