Nigel Nicholls
General Manager UK, Global Blood Therapeutics
John James OBE
Chief Executive, Sickle Cell Society
Charity groups and campaigners are raising awareness of sickle cell disease as those living with the most common genetic condition in the UK continue to face barriers to healthcare access.
Sickle cell disease (SCD) is the most common genetic condition in the UK but people living with SCD still face barriers accessing care and treatment. Campaigners also fear there is a lack of awareness among the public and healthcare professionals (HCPs).
In the UK, 15,000 people have SCD and one in seven adults of African and Caribbean descent carry the sickle cell gene.
Lack of investment
John James OBE, Chief Executive of the Sickle Cell Society, which GBT supports, says the lack of SCD research and funding has been “appalling”.
While that is changing, as companies such as Global Blood Therapeutics (GBT) focus on disease-modifying treatments for SCD, it remains a condition affected by inequity. As well as lack of investment in specialist services and poor recruitment to ‘red cell’ clinical posts compared to other blood-related positions, Mr James adds: “I think there has been an element of racism and discrimination which has impacted on decision-making and investment.”
Life-threatening disease
SCD is an inherited health condition with a life expectancy of approximately 30 years less than the general public. The condition affects haemoglobin, causing round red blood cells to become crescent-shaped, in turn reducing blood flow and resulting in progressive and life-threatening complications, including damage to major organs and pain crises.
I am proud GBT is focused on bringing more innovations in SCD and is working to develop a pipeline of molecules which we hope will address some of the needs.
Nigel Nicholls
Barriers to accessing healthcare for SCD patients were highlighted in the all-party parliamentary group for sickle cell report “No One’s Listening.” It found patients received sub-standard care, particularly in accident & emergency; low awareness and training among HCPs; lack of understanding of the pain experienced and negative attitudes to people who live with SCD.
“We believe SCD training, particularly for nurses, should be mandatory and have recommended NHS England revisit workforce and investment in SCD services,” adds Mr James.
Raise awareness
Treatments are limited and are primarily pain relief, but can also involve bone marrow transplant, blood transfusions, hydroxyurea, gene therapy, diet and hydration.
GBT is working to develop life-changing treatments for people with blood disorders, but General Manager Nigel Nicholls warns that patients must have a choice of treatments as “not every drug suits every patient.”
“While there has been a woeful lack of innovation and investment, I am proud GBT is focused on bringing more innovations in SCD and is working to develop a pipeline of molecules which we hope will address some of the needs,” he says.
