Independent report released by Haemochromatosis UK outlines clear economic benefit in

terms of avoided treatment costs, quality of life and greater supply of blood products

• Up to 1 in 10 of the population in Northern Ireland are estimated to be at risk of Genetic

Haemochromatosis

• Genetic haemochromatosis is a genetic condition where a person is pre-disposed to absorb

iron from their diet and accumulate iron in their body. Late diagnosis can lead to serious long-

term health conditions

• Primary treatment for the condition is regular venesection (bloodletting) – most people with

GH can be blood donors (subject to the usual donor service eligibility criteria)

Belfast, 17 February 2025 – Haemochromatosis UK (HUK), a charity dedicated to supporting people affected by genetic haemochromatosis (GH), today announces the launch of a report on the economic impact of screening for GH in Northern Ireland. The findings indicate that there is a clear economic case for routine population-based GH screening in Northern Ireland under a range of assumptions for the prevalence of GH. The economic case is strongest for screening people in their 40s. The report will be formally launched at an event in Stormont this afternoon, opened by Mike Nesbitt MLA, Minister for Health, Northern Ireland.

Key findings of the report, prepared by FTI Consulting for HUK, include:

• GH screening would enable earlier diagnosis and treatment of GH, and therefore has the

potential to prevent or reverse much of the current and forecast chronic ill health associated

with GH.

• The estimated value of avoided costs of treating chronic health conditions associated with GH

could range from £18-25m in the event of low GH prevalence to £67-91m in the event of high

GH prevalence over a 40-year period.

• A lower incidence of chronic illness (particularly liver disease and osteoarthritis) would also

improve the quality of life of people living with GH. The estimated value of ‘quality of life

benefits’ could range from £10-15m in the event of low GH prevalence to £38-54m in the

event of high GH prevalence over a 40-year period.

• GH screening is also expected to improve labour force participation amongst working age

adults who would otherwise need to take time off or retire early to help manage chronic

illness. This, in turn, would likely lead to greater productivity and economic output.

• The cost of GH screening would be lower than the cost of most other screening programmes offered by Health and Social Care in Northern Ireland as it is only required once in a lifetime.

The annual cost of GH screening would decline substantially after the initial roll out period,

from around £3m to £1m per annum.

• Population-based GH screening has the potential to lead to a significant increase in the

number of regular blood donors in Northern Ireland as treatment for GH typically takes the

form of regular venesection (blood donation). Blood drawn from GH patients can often be

donated to the wider health system and used for the benefit of other patients and to avoid

shortages.

Population-based screening for GH in Northern Ireland would also help researchers to learn more about the disease by tracking whom it affects, their symptoms and long-term outcomes.

The recommendation to offer genetic screening in Northern Ireland is based on GH being particularly common in regions with a high population of people from a Celtic background. Research into the prevalence of the condition in Northern Ireland has been limited historically, but initial analysis of HUK screening data suggests that the prevalence of GH may be higher in Northern Ireland than in other parts of the UK, with up to 1 in 10 residents at risk.

Although GH is an inherited condition, diagnosis often follows the development of symptoms associated with iron loading and there is limited preventative screening. Evidence suggests that only around 2% of people in the UK who are genetically predisposed to GH are currently formally diagnosed. HUK estimates that only around 21,000 people in the UK are currently receiving treatment for GH.

Dr Steve Aiken OBE MLA, Deputy Speaker of the NI Assembly, said : “I first discovered I had genetic haemochromatosis by accident during a routine health screening. The fact that no screening is normally offered meant that if this had not happened, my very high levels of ferritin would have meant real, and irreversible, health damage would have occurred. The regular treatment, my ‘vampiring’ as my kids call it, has brought my iron levels back into the normal range, with no health effects.”

Neil McClements, Chief Executive of Haemochromatosis UK, said: “Screening saves lives – it also money. Today’s report highlights the unequivocal benefits of wider population-based genetic screening for haemochromatosis to families and the broader economy in Northern Ireland. Early

diagnosis is essential to ensure that people at risk of iron overload (genetic haemochromatosis) get

access to the treatment they need before it leads to serious, and often devastating consequences. This

is particularly true in Northern Ireland where our pilot cross-community screening programme has found

up to 1 in 10 people locally could be at risk.”

Dr Aiken continued : “I would encourage anyone who thinks that they may have the condition to seek

a blood test from their GP. While some GP’s may need to be encouraged to conduct these simple tests,

they are of great benefit to you, your family and above all, our health service. Dealing with

hemochromatosis early will stop you having chronic health problems, it also helps our precious NHS.

”

About genetic haemochromatosis

Genetic haemochromatosis (GH) is a genetic condition where a person is pre-disposed to absorb iron from their diet and accumulate iron in their body. Over time, this can result in too much iron building up in the body and lead to a state known as ‘iron overload’. The build-up of iron in the body and its tissues can cause persistent and life-affecting symptoms, including chronic fatigue, joint pain, liver disease, and psychological and cognitive difficulties. These can have an adverse impact on the quality of life and the wellbeing of people with GH. If left untreated, the build-up of iron caused by GH can damage other parts of the body, including the liver, joints, pancreas, and heart. People with GH are more likely to develop medical conditions such as liver disease, liver cancer, diabetes, arthritis, dementia, sepsis and heart

disease, and are more likely to require treatment. Serious complications of GH have been associated with reduced life expectancy for patients.

About Haemochromatosis UK (HUK)

At HUK, our aims are to support those living with and at risk of haemochromatosis, to educate families, the wider public and healthcare community about the condition in order to improve public health, and to stimulate research into the condition and its impact on people’s lives.

For more information, please contact:

FTI Consulting

Ciara Martin/Julia Bradshaw/Amy Byrne

+44 (0)20 3727 1000

Haemochromatosis UK

Neil McClements

media@huk.org.uk

01775 529464 / 03030 401 101 Option 3

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