Genetic Haemochromatosis

Part of the debate – in Westminster Hall at 5:23 pm on 3rd July 2019.

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Photo of Seema Kennedy Seema Kennedy The Parliamentary Under-Secretary for Health and Social Care 5:23 pm, 3rd July 2019

It is a pleasure to serve under your chairmanship, Mr Sharma. I know that I am pressed for time, so if I do not respond to all comments I will happily write to hon. Members. I thank my hon. Friend Mark Pawsey for securing this important debate on genetic haemochromatosis. I also thank his fellow members of the APPG and all right hon. and hon. Members who have spoken in the debate for highlighting the disease, which affects so many of us. Liz McInnes in particular, with her scientific knowledge, made a very good speech.

The Government are dedicated to improving the lives of all patients who live with rare diseases, as set out in the NHS long-term plan and the rare diseases strategy. Clearly, early diagnosis and treatment is key to prevent the development of the conditions that can arise from GH. I hope to be able to answer all the questions raised by my hon. Friend the Member for Rugby and others.

One part of diagnosis is genetic testing. That is a more recent development in haemochromatosis and is used to determine whether a mutation in the HFE gene is present, which can lead to iron overload. In January 2019 the NHS long-term plan set out the ambition to focus targeted investment in areas of innovation, including genomics. Last year NHS England launched its genomics medicines service, making the UK the first country in the world to integrate whole genome sequencing into routine clinical care. The GMS aims to provide consistent and equitable access to cutting-edge genomic testing to England’s population.

The first national genomic test directory, which underpins this service, was published in March 2019. It specifies which genomic tests are commissioned by the NHS in England, the technology by which they are available and the patients who will be eligible to access them. GH is included in the directory. To ensure that the directory remains at the cutting edge, it will be updated on an annual basis to keep pace with scientific and technological advances. We are developing a national genomic healthcare strategy, which is overseen by Baroness Blackwood, and that is happening alongside work with the Office for Life Sciences.

Hon. Members have referred to the UK National Screening Committee’s 2016 evidence about whether testing should be offered—as the hon. Member for Heywood and Middleton said, that raises massive ethical questions. That was because not all people with the faulty HFE gene—as somebody who is half-Irish, I am now concerned—will go on to develop the condition. At the time, no evidence was found that provided that committee with evidence that a screening programme would be effective. However, it is important to take account of new evidence and developments as they emerge. The screening committee is always keen to consider new research and will be looking at new evidence to screen for hereditary haemochromatosis in 2019-20. I assure the House that I will follow that with great interest.

GH is not currently part of the NHS health check, but Public Health England routinely publishes open calls for proposals for new content to include in the check, which they consider in view of evidence, cost, clinical effectiveness, feasibility of implementation and health equity. On NICE guidelines, the British Society for Haematology has already published guidelines on the management of GH. They were last updated in 2018. NHS England is the body with responsibility for commissioning new clinical guidelines from NICE. If anyone considers that guidance from NICE would add value, proposals for such guidelines can be made to NHSE.

The shadow Minister made some points about the public health budget and the Green Paper, which we have often discussed. They will of course be subject to best evidence in the spending review. My hon. Friend the Member for Rugby talked about patient blood meeting ongoing national needs for donated blood, red blood types and associated blood products. NHS Blood and Transplant has been working in close partnership with Haemochromatosis UK to engage with patients with GH and to inform them that they are able to have their blood removed through blood donation. During National Blood Week in June this year, articles and social media posts were used to inform patients about the procedure for donating blood at a blood donation centre. NHSBT is continuing its work to ensure that patients are informed about the life-saving gift that they can give.

Patients who want to donate blood instead of having venesections have to meet the criteria set out by NHS Blood and Transplant for all donors, and they are advised to have iron check-ups with their consultant. Patients who want to donate blood need to call the NHS Blood and Transplant national call centre to inform it of their condition. That will allow the haemochromatosis patient to donate blood at a donation centre more frequently than the rest of the population.

I thank all right hon. and hon. Members and the members of Haemochromatosis UK who have helped us to raise awareness of this condition, because there is a significant gap in our understanding. Hon. Members have rightly pointed out that this is the first time we have discussed GH in this House. I fully recognise the need to raise awareness about GH among healthcare professionals and to provide training. I reassure the House that the Government are committed to ensuring that those affected by rare diseases receive high-quality care.

Question put and agreed to.


That this House
has considered genetic haemochromatosis.

Sitting adjourned.