Haemochromatosis UK (HUK) is a national charity that supports people affected by genetic haemochromatosis (GH). GH causes iron overload, which can lead to serious health problems. The charity works to raise awareness, diagnosis and treatment for GH across the UK.

Problem

In 2022, Haemochromatosis UK (HUK) and PBE worked together through an initial Data First Aid request. HUK wanted to understand the economic impact of GH in Northern Ireland as part of a broader strategy to influence public health policy and advocate for early screening.

Solution

PBE connected HUK with Health Economist, Joanna Findlay from Imperial College Health Partners.

Her work with HUK measured how GH affects finances in Northern Ireland. This research resulted in published paper showing that people with genetic haemochromatosis in Northern Ireland cost the region about £38.3 million each year.

Recognising the need for a more detailed economic model, HUK submitted a second Data First Aid request. PBE matched HUK with expert volunteers Katarina Punovuori, Avinash Mehrotra and Jonny Bound from FTI Consulting. They worked with HUK to show the costs and benefits of screening people in their 40s for GH. Their analysis, designed to be accessible to policymakers made a strong financial and economic case for a screening programme..

Their findings showed that (under a range of assumptions) screening people could:

  • 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

Benefits

The final report was launched at the Northern Ireland Assembly on 17 February, featuring keynote speeches from Health Minister Mike Nesbitt MLA and Steve Aiken OBE MLA. The launch event and following photography exhibition marked a significant milestone in HUK’s advocacy efforts. The report clearly demonstrated the benefits of screening, strengthening HUK’s case for policy change.

Impact

Their first published paper received wide media attention, including coverage by the BBC and other Northern Irish news outlets, Newry.ie, Irish Mirror and News Letter.

Read the final published report by FTI Consulting here.

“This work has been instrumental in helping us make the case for screening. The volunteers were brilliant—professional, insightful, and committed. We’re incredibly grateful to PBE for making this possible.” Neil McClements, HUK