Haemochromatosis UK commissioned FTI Consulting LLP to evaluate the economic costs and benefits of screening for genetic haemochromatosis (GH) in Northern Ireland. 

The report's authors reveal in their independent report 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.

• Screening saves lives, saves money
• For every £1 spent on screening, over £3 of benefit is generated (*)
• The case for screening is strongest for people in their 40s - both men and women (#)

Over the past 3 years, Haemochromatosis UK has been running cross-community screening programmes across Northern Ireland (and in other areas of high prevalence across the UK). These demonstrate that 1 in 10 people in NI are at risk of iron overload from genetic haemochromatosis.

Screening people in FTI Consulting's base case(^) would : 

• Save the NHS £91 million in care costs
• Improve Quality of Life by £54 million
• Help others by securing £53 million of donated blood products

The report is available in hard-copy and online :

The Economic Impact of Screening for Genetic Haemochromatosis In Northern Ireland

Key findings of the report 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 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.

Neil McClements, Chief Executive of Haemochromatosis UK, said: “Early diagnosis is essential to ensure that people living with GH get access to the treatment they need before it leads to serious, and often devastating consequences. This report highlights the unequivocal benefits of genetic screening for GH to both individuals and the broader economy in Northern Ireland, where we estimate that up to 1 in 10 of the population could be living with the condition.”

Haemochromatosis UK gratefully acknowledge the generous support of the Sylvia Adams Charitable Trust, the Robert Luff Foundation, Ulster Garden Villages, the O’Hare family (Carrive Grove Nursery), National Lottery Community Fund (NI), The Gill’s Charity Fund, Maureen Boal Charitable Trust, Esme Mitchell Trust and Enkalon Foundation in sustaining our cross-community screening & public health research programmes.

(*) when screening people in their 40s.
(#) there are also net benefits from screening people in their 30s and 50s.
(^) men & women in their 40s, over a 40 year follow up period