Stormont MLA with ‘Celtic curse’ backs calls for screening programme

Ulster Unionist MLA Steve Aiken (60) has spoken about managing a genetic condition that requires a regular blood-letting treatment his children call “vampiring.”

Mr Aiken, a former submarine commander and now deputy speaker of the Assembly, shared his experience on Monday ahead of the launch of a report at Stormont by Haemochromatosis UK.

Also known as the Celtic Curse due to Irish and northern Europeans being at higher risk, Genetic Haemochromatosis (GH) causes people to absorb too much iron from their diet, with late diagnosis causing serious long-term health conditions like liver and and joint disease.

Around one in 10 people in Northern Ireland are thought to be at risk of the condition, with the charity setting out the economic benefits a wider screening programme – particularly for people in their 40s.

The primary treatment for the condition is regular venesection (bloodletting), but those with GH can also be eligible as blood donors.

Mr Aiken told the Irish News he first learned he had the condition by accident after undergoing a health check at work in 2013.

“I had never heard of haemochromatosis, but the doctor told me I had a huge level of iron in my system,” he said.

“I then found out about all the problems it can cause, so I was glad I caught it when I did.

“After being regularly vampired, as my kids laughlingly call it, at two-week intervals that reduced to monthly and now it’s under control at three monthly levels, and the iron levels are back down.

“It’s lucky I caught it when I did. It can cause organ damage and also exacerbates things like arthritis so it can be a real problem.

“I think it should be checked for everyone going for a normal blood test. Like many of these things, prevention is much better than the enormous cost of the cure.

“If we get it early, it will considerably reduce the burden on our wonderful health service.”

The report from HUK states that a population-based screening programme has the potential to prevent much of the current and forecast ill health associated with GH.

This estimated value of avoided costs in treating chronic health conditions linked to GH over 40 years could range from £18-25m in the event of low prevalence to as high as £67-91m in the event of high prevalence.

Other benefits of screening would be increased labour force participation, regular blood donors and research.

The charity say the initial annual cost of screening would decline substantially from £3m to £1m after the initial rollout period, as it is only required once in a lifetime for patients.

Although GH is an inherited condition, diagnosis usually only follows the development of symptoms linked to ‘iron-loading’ - with HUK stating that only 2% in the UK with GH are diagnosed, with 21,000 receiving treatment across the UK.

Neil McClements, Chief Executive of Haemochromatosis UK, said early screening was essential to avoid people developing what can often be “devastating” health problems.

“Screening saves lives – it also saves 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.”