People with RAIRDs were more likely to die from COVID-19 during first wave of the pandemic

Research published today indicates that the 170,000 people in England with rare autoimmune rheumatic diseases like lupus, scleroderma, and vasculitis were more likely to be infected with, and die from, COVID-19 compared to the general population during March-July 2020.

Using data from March to July 2020, during the first wave of the COVID-19 in England, a paper published by researchers from the RECORDER project, has concluded that adults with the included rare autoimmune rheumatic diseases (RAIRDs) had a 54% greater risk of COVID-19 infection and more than twice the risk of COVID-19-related death compared to the general population after age and sex were taken into account.

Whilst the results are sobering, this research is important. Through a novel collaboration with National Congenital Anomaly and Rare Disease Registration Service (NCARDRS), it allows for comparison between everyone in England who has ever been hospitalised for their RAIRD and the general population, giving a far more comprehensive and thorough account of how people with these diseases have been affected.

While previous research had shown that people with rare autoimmune diseases were more likely to die, of any cause, during the first two months of the pandemic, researchers were unsure whether this rise was due to COVID-19 infection or a disruption to peoples’ ongoing care for their RAIRD.

The study only used data from England, however, we believe its conclusions will hold for patients in Wales, Scotland and Northern Ireland.

As a result of this research, RAIRDA are calling for further steps to protect people with these diseases from COVID-19. Including actions to: protect people receiving treatments in hospitals through testing; ensure everyone with these diseases receives a booster jab; and for employers to act to protect people.

Responding to the research, Sue Farrington, Co-Chair of the Rare Autoimmune Rheumatic Disease Alliance, and Chief Executive of Scleroderma and Raynaud’s UK, said:

“These diseases are often overlooked because their individual rarity means we lack solid data on them, but thanks to this research we have clear evidence about the impact of COVID-19.”

“We need to make sure we’re taking steps to protect these people. For example, hospitals have been told to test everyone undergoing a surgical procedure, but not all are testing people before they go into a unit where immunosuppressed people are receiving infusions. With higher risk of death among these patients from COVID-19, and uncertainty about how effective vaccines are for people on immunosuppressive treatments, we need to do more to protect these people whilst cases remain high.”

What about vaccines?

The data used in this research dates from the first wave of the pandemic. As such, it shows the need to protect people with RAIRDs through vaccination but does not tell us about how effective vaccines are among these people.

People who are immunosuppressed, which includes many people with RAIRDs, may have a weaker response to the vaccine, which may mean they get less protection from the vaccine. However, there is a lot of uncertainty about to what extent this is the case, and more research is needed.

As well as wider research into vaccine efficacy among people who are immunosuppressed, research is ongoing specifically into vaccine efficacy among people with rare autoimmune rheumatic diseases, and this will also look at the impact of booster jabs due to be given in autumn. Research is also looking at whether specific medications and treatments affect vaccine efficacy.

Has disruption to ongoing care affected people with RAIRDs

As well as showing an increased risk of death from COVID-19, this paper shows there was not an increase in risk of death from other causes. This suggests that, while there were significant disruptions to care for RAIRDs, these did not impact on patients’ risk of death in the first few months of the pandemic.

However, we do know that the impact of disruption may only become apparent over the longer-term. Maintaining responsive care for these conditions will mean fewer serious complications that the health service, and patients, will need to deal with in future.

What about Sjögren’s syndrome?

Patients with Sjögren’s syndrome were not included in this research, so it does not tell us anything about their risk from COVID-19. Whilst patients often have Sjögren’s and another rheumatic disease, people with Sjögren’s alone are less likely to be on immunosuppressive treatments, which would suggest their average risk from COVID-19 is lower than for people with diseases like scleroderma, lupus and vasculitis.

What are we calling for?

The most vulnerable must be protected in hospitals

Some hospitals across the UK have already implemented measures to protect people with RAIRDs coming into hospital to receive strongly immunosuppressive treatments, such as testing for everyone coming into units where people receive treatments.

However, this has not been consistently done across the UK and we are calling for all hospitals to consider having measures in place to protect people in their day case units, such as testing everyone coming into a unit for COVID-19.

The people coming into these units for treatment are often the most immunosuppressed, and therefore the most vulnerable to COVID-19, and having an infusion can involve being inside for many hours in close proximity to other people.

Guidance from NICE currently only recommends testing everyone going into hospitals for surgery, but not other planned procedures. Some hospitals do test in their day case units, but this is not mandated or universal practice. As well as testing, we recommend units consider adopting the relevant measures recommended for, and put in place by, dialysis units.

Booster jabs are vital – people with these disease must be covered

This research shows how important it is that people with RAIRDs have their COVID-19 vaccinations to get a degree of protection from COVID-19.

However, people who are immunosuppressed may have a weaker response to COVID-19 vaccinations than the general popular. Research is ongoing but one study suggests that COVID-19 vaccinations are less effective in people who are immunosuppressed after only one dose, highlighting the importance of the second dose.

All this shows how important it is that people with rare autoimmune rheumatic diseases are vaccinated and are prioritised for booster doses due to be delivered in the autumn. Rare Diseases Europe (EURORDIS) have called for third doses to be a priority for people with certain immune conditions, citing research that says a third dose pushes antibody levels 5-10 levels higher.

Despite being eligible for flu vaccinations through the NHS, people with these conditions have often missed out on these vaccinations. This happens for a variety of reasons including: diagnoses made in hospitals not being recorded in GP data, or healthcare professionals not recognising that these conditions make someone eligible for vaccination. This cannot be allowed to happen with booster jabs for COVID-19.

Employers must protect workers

All of this means that for those people at greatest risk of serious infection and whose response to the vaccine is still the focus of ongoing research, the return to work will not be straightforward. A coalition of charities has written an open letter to employers, asking them to take appropriate steps to keep people who are extremely clinically vulnerable safe. You can find this letter here.

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