A significant restructuring of acute hospital services has taken place to accommodate patients with covid-19 and to limit the spread of infection. For gastroenterology and hepatology patients, non-essential treatment was deferred for at least three months and instead outpatient care became virtual, an approach supported by expert consensus guidelines. [1,2] These necessary changes sharpened the focus on what hospital-based care could be provided during the pandemic, and which services could be diverted to the community. For many patients with chronic diseases this was a manageable approach, and they benefitted from advanced telehealth systems. [3] But for patients dependent on physical visits to the hospital for treatment, this advance was unfortunately not applicable to their condition. 

One such patient group is those with hereditary haemochromatosis (HH), the most common genetic condition in people of European descent, characterised by progressive iron overload. HH is treated by systemic iron reduction through repeated venesection which, given its effectiveness and the lack of pharmacological alternatives, has remained unchanged for decades. [4] During the current pandemic, the urgent deferral of venesection as a non-essential treatment has exposed several deficiencies in the care of HH patients.

When it is detected and treated in time, HH is generally not associated with a significant increase in mortality. [4] However, a recent, large, study from the UK Biobank revealed a significant increase in morbidity, with an increased inherent risk of liver disease, diabetes, rheumatoid arthritis and osteoarthritis associated with the condition. [5] Effective venesection reduces disease complications — in a 2017 survey by Haemochromatosis UK of almost 2000 patients, 70% said that ‘de-ironing’ relieved many symptoms of the disease, in particular fatigue which can severely affect quality of life. [6, 7]

Venesection treatment stopped abruptly for many patients because of covid-19, as it was deemed a non-essential service. [8] Although this was appropriate to protect patients and healthcare workers, venesection can only be provided in a clinical setting and so this decision undoubtedly led to significant stress for patients who were unable to access treatment and had no alternative. [9]

Despite many health systems adapting efficiently because of covid-19—particularly in areas where care had evolved to be less reliant on hospital settings — the pandemic has also revealed which conditions have outdated treatments. Although the significant inconvenience caused to patients with HH is unlikely to have long-term sequelae, the sudden disruption to their treatment because of covid-19 has highlighted the need for an urgent search for new therapies, detached from healthcare settings, for hereditary haemochromatosis.

Clare Foley is a gastroenterology registrar in the Hepatology Unit, Beaumont Hospital, Dublin.

Fiona Colclough is a haemochromatosis nurse in the Hepatology Unit, Beaumont Hospital, Dublin.

John D Ryan is consultant hepatologist in the Hepatology Unit, Beaumont Hospital, and associate professor at the Royal College of Surgeons in Ireland.

References:

1. Danese S, Ran ZH, Repici A, et al. Gastroenterology department operational reorganisation at the time of covid-19 outbreak: an Italian and Chinese experience. Gut 2020;69(6):981-83.
2. The Liver Working Group for the Irish National Clinical Programme in Gastroenterology and Hepatology . Consensus guidance for the care of liver patients during COVID-19. 2020
3. Webster P. Virtual health care in the era of COVID-19. The Lancet 2020;395(10231):1180-81.
4. Prabhu A, Cargill T, Roberts N, et al. Systematic review of the clinical outcomes of iron reduction in Hereditary Hemochromatosis. Hepatology 2020
5. Pilling LC, Tamosauskaite J, Jones G, et al. Common conditions associated with hereditary haemochromatosis genetic variants: cohort study in UK Biobank. BMJ 2019;364
6. Bardou-Jacquet E, Lainé F, Guggenbuhl P, et al. Worse outcomes of patients with HFE hemochromatosis with persistent increases in transferrin saturation during maintenance therapy. Clinical Gastroenterology and Hepatology 2017;15(10):1620-27.
7. The Lancet Gastroenterology H. Ironing out unmet need in genetic haemochromatosis. Lancet Gastroenterol Hepatol 2019;4(1):1. doi: 10.1016/S2468-1253(18)30391-1
8. Willan J, King AJ, Djebbari F, et al. Assessing the Impact of Lockdown: Fresh Challenges for the Care of Haematology Patients in the COVID‐19 Pandemic. British journal of haematology 2020
9. https://www.glasgowtimes.co.uk/news/18421764.patients-affected-celtic-curse-blast-covid-service-cuts/