International Thalassaemia Day

Opened the debate

Thalassaemias are inherited blood disorders that can lead to severe anaemia if not managed appropriately. Patients with transfusion-dependent thalassaemia receive regular blood transfusions and iron chelation therapy, which can cause secondary conditions such as diabetes and heart failure. The prevalence is higher among individuals of Caribbean, South American, African, Mediterranean, south Asian, southeast Asian, and Middle Eastern ancestry. In the UK, over 900 people live with beta thalassaemia major, while about 20 to 30 couples annually are at high risk of having a baby with thalassaemia. There is evidence that thalassaemia services in the UK are under-resourced and underdeveloped compared to those for other blood disorders, leading to health inequalities and instances of overt racism affecting patients' mental health and treatment quality.

Government Response

It is a pleasure to serve under your chairmanship, Mr Hosie. I thank the hon. Member for Enfield, Southgate for securing today's debate ahead of International Thalassaemia Day on May 8th. The Government are determined to address long-standing health disparities, particularly for those with thalassaemia. The NHS Race and Health Observatory was established over a year ago, tackling issues faced by minority communities in health inequalities. Last year, the Office for Health Improvement and Disparities (OHID) was launched, which is doing significant work in these areas. Tackling the issues raised is key to reducing the gap in life expectancy between the areas with the highest and lowest, aiming for a five-year rise by 2035. The review of haemoglobinopathy services concluded in 2019, resulting in the development of a new model based on haemoglobinopathy co-ordinating centres and national panel. Four specific centres alongside ten sickle cell centres have been commissioned to provide clinical expertise. We need people to donate blood and consider stem-cell donation as well. Training for healthcare staff is crucial; the Joint Royal Colleges of Physicians Training Board has included sickle cell and thalassaemia as core competencies in the haematology training curriculum, while Health Education England provides two relevant e-learning healthcare programmes on the NHS screening programme. All women should be screened during pregnancy for thalassaemia at 12 weeks gestation to prepare parents and ensure services are in place upon birth. The NHS sickle cell and thalassemia screening programme nearly identifies all sickle cell affected children born in England, improving outcomes for patients going forward. I am keen to look into the issue of treatment as gene therapy is potentially curative for the affected population, while ongoing issues with NICE approval need further discussion. Research studies are being conducted to improve treatment outcomes and make access available for patients. The disease is rare but international studies and discussions with bodies such as NICE will ensure that small patient numbers do not deter drug approval. I suggest meeting both the hon. Gentleman and the right hon. Member for Wolverhampton South East to address these issues further, particularly in light of the health disparities White Paper coming forward shortly.