Genetic Haemochromatosis

Part of the debate – in Westminster Hall at 4:30 pm on 3rd July 2019.

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Photo of Mark Pawsey Mark Pawsey Conservative, Rugby 4:30 pm, 3rd July 2019

It is a pleasure to serve under your chairmanship, Mr Sharma. It is a great privilege to secure this important debate on genetic haemochromatosis. I chair the all-party parliamentary group for genetic haemochromatosis (iron overload). I want to raise awareness of the condition, within Westminster and beyond. I will explain what genetic haemochromatosis is and its prevalence within the UK. I will also look at how the condition fits into the NHS priorities. I will conclude with three asks to the Minister on behalf of the charity Haemochromatosis UK, which is represented here, and the APPG.

Until recently I knew nothing about the condition. Two or three years ago I visited the charity Haemochromatosis UK, which was based in my constituency, and the condition was explained to me. The lack of awareness of the condition and the importance of early diagnosis were brought to my attention. As a consequence of those discussions with the charity and some other hon. Members, some of whom are here, we formed the APPG earlier this year.

The APPG was based on the report published by Haemochromatosis UK in October 2018, which highlighted the previously underestimated impact of the condition, in terms of the number of people affected and the chronic effect it has on people’s lives. The APPG first met in January and we met again in May to talk about the adoption of clinical guidelines, which I will refer to later.

What is genetic haemochromatosis? It is a genetic condition in which the body fails to control the absorption of iron. Some hon. Members may have heard it described as iron overload or iron overload disorder. Iron builds up within the body and reaches a highly toxic level. That can lead to a multitude of different health problems. Iron builds up particularly in the liver and the damage is progressive. At its worst, iron overload can kill through liver and heart failure.