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International Thalassaemia Day
27 April 2022
Lead MP
Bambos Charalambous
Southgate and Wood Green
Lab
Responding Minister
Maria Caulfield
Tags
NHSTaxationEmploymentForeign AffairsMental Health
Word Count: 2884
Other Contributors: 2
At a Glance
Bambos Charalambous raised concerns about international thalassaemia day in Westminster Hall. A government minister responded.
Key Requests to Government:
The Minister should ensure that NICE's highly specialised technology and standard technology appraisal pathways are fit for purpose for people with rare diseases, taking into account the unique nature and impact of such conditions. The Government must also address discriminatory attitudes in healthcare settings to improve equal access to care and health outcomes for patients with thalassaemia.
How the Debate Unfolded
MPs spoke in turn to share their views and ask questions. Here's what each person said:
Lead Contributor
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.
Pat McFadden
Lab
Wolverhampton South East
Asked if the lead MP had read the report from the sickle cell and thalassaemia all-party parliamentary group, 'No One's Listening', expressing hope that it will serve as a turning point to improve treatment and understanding of these conditions.
Stewart Hosie
SNP
Dundee East
I am concerned about the lack of support for individuals living with thalassaemia and call on the government to increase funding for research, treatment and patient care.
Government Response
Maria Caulfield
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.
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About Westminster Hall Debates
Westminster Hall debates are a chance for MPs to raise important issues affecting their constituents and get a response from a government minister. Unlike Prime Minister's Questions, these debates are more in-depth and collaborative. The MP who secured the debate speaks first, other MPs can contribute, and a minister responds with the government's position.