New research shows impact of COVID-19 pandemic on people with RAIRDs

New research published last week showed that in March and April 2020, as COVID-19 hit the UK, the risk of death among people with RAIRDs (rare autoimmune rheumatic diseases), in England increased more than it did among the general public. In this article, we explain the importance of this research.

Why is this research important?

As well as showing a generally higher risk of death for people with RAIRDs than the general public, other key findings from the research included: the fact that for people with RAIRDs, being female did not seem to reduce the risk of death, as it does generally with COVID-19; and that the risk of death from COVID-19 for people with RAIRDs increased from the age of 35, rather than 55 as it does among the general public.

The research does not tell us whether the extra risk of people with RAIRDs dying was due to them being more likely to become severely ill due to COVID-19 infection, or whether it was down to something else, like the disruption to care for their long-term rare autoimmune rheumatic disease.

Either way, this research shows that improving care for people with these conditions must be prioritised in the long-term. We showed in 2018 that there were long waits for diagnosis, inconsistent access to specialist care, and clear issues with coordination of care for too many people. These issues have been compounded, not created, by COVID-19.

NHS England’s current guidance says services should prioritise seeing people with RAIRDs, even if services come under pressure from COVID-19. This study supports this prioritisation, but coupled with RAIRDA’s findings, shows the need to build services back better to fix the long-term issues with care.

Importantly, clinicians and patients have highlighted to us the ways that disruption to care by COVID-19 stores up problems for the future. Delays to treatment, diagnosis, and medication monitoring could all have long-terms implications for patients, including potential organ damage. Whilst these less immediate impacts were not the focus of this study, they should not be forgotten.

Other important findings of this research include the fact that, ‘COVID-age’ a tool used by workplaces to assess someone’s vulnerability to COVID-19, would “underestimate the risks particularly to young and/or female people with RAIRDs”. Another planned COVID-19 risk prediction model commissioned by Office of the Chief Medical Officer for England to help GPs and clinicians give patients better advice about their risk from COVID-19 would also underestimate risk to people with RAIRDs. This is because the risk for people with RAIRDs is higher than people with other chronic conditions which these conditions have been grouped with.

This is the first research we are aware of that collects national-level data on rare autoimmune rheumatic diseases. One of the major issues with these rare diseases is that UK health services do not collect and compile data which can be used for this kind of research. The authors have done the RAIRD community an important service by showing how routinely collected Hospital Episode Data (information which is noted whenever someone visits hospital, importantly noting the condition they were admitted with) can be used to understand how people with RAIRDs are being impacted by the pandemic.

Whilst individually the 17 diseases covered by this research may be rare, the study shows that just under 170,000 people have been diagnosed with one in England since 2003 and were still alive as of the 1st March 2020. So, the first message to take away from this research is that lots of people live with RAIRDs. Given the similarities between different RAIRDs, improving the way we diagnose, treat, and care for people with these conditions across the UK will help thousands of people.

Whilst the study covered just England, with COVID-19 impacting each of the four nations in the UK in a similar way, we believe this study has similar implications for Wales, Scotland and Northern Ireland.

What comes next?

Before this research was published, we knew just how difficult the past 9 months have been for people with RAIRDs. This was clear from our ‘Chronic Crisis’ survey and what patients told RAIRDA’s member charities on helplines and online forums. We also know that this research will not make comfortable reading for patients who have already faced months and months of difficult news, and may have experienced first-hand the challenges of shielding, or difficulties accessing care. However, this research is an important step towards making health services and decision-makers give RAIRDs the attention and resources they need.

The research authors now plan to look at to look at death certificate data to determine the cause of deaths and the impact of shielding. This could help health services and clinicians make decisions in the future to better protect patients. The authors also note there is a need to examine the effect of ethnicity, immunosuppression and steroid usage on risks for people with RAIRD.

In the coming months we will be campaigning for the government and health service to make RAIRDs a priority as the health service recovers, and make sure they get the same quality of care which is expected for other life-altering and life-threatening conditions. This is something we will need the support of patients to do, and we hope to share details of how you can support this in the coming months.

The good news is that the last few months have shown how quickly the health services can transform and make progress, whether with changes to processes like introducing remote appointments en masse or rapid advances in treatment, and now vaccinations, for COVID-19. We believe we can make sure future changes and transformations benefit people with RAIRDs. There is some excellent care for RAIRDs in the UK, this too shows that many of the long-term issues which many people with RAIRDs have faced are not inevitable and can be overcome.

Read more on the study from the British Society for Rheumatology here.

The Registration of Complex Rare Diseases Exemplars in Rheumatology (RECORDER) project is a collaboration between the University of Nottingham, and the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) within Public Health England. Read the full study here.

Dr Peter Lanyon, one of research’s authors is a Co-Chair of RAIRDA. The research received funding from RAIRDA member Vasculitis UK.