Charities and clinicians urge Government to secure Evusheld

Over 120 clinicians representing 17 different clinical specialities, across all 4 nations, have released a clinical consensus statement saying that there is sufficient evidence that the Covid-19 preventative Evusheld would have clinical benefit to people who are immunocompromised, and a protective antibody treatment program should be delivered as soon as possible.

For many immunocompromised people, the first lockdown in 2020 never ended, which is why in addition to the clinical consensus statement, alongside 18 charities, including our member charities LUPUS UK and Vasculitis UK we have signed an open letter to Steve Barclay MP, urging the Government to buy Evusheld to protect the people they represent who remain vulnerable to Covid-19.

You can see the letter here:

What can I do to help?

We would like to request your help with this – we’ve written a template letter below that you can use to send to your MP asking them to write to the Secretary of State. You can find out who your local MP is and their contact details using the find your MP website.

Download our template letter to MPs below:

Survey shows poor communication around COVID-19 vaccine and treatments for people with rheumatic conditions

We would like to thank everybody who took part in our survey of people with rheumatic conditions about the fourth coronavirus (COVID-19) vaccination dose. The purpose of the survey was to better understand whether those eligible have been able to access a fourth dose of the COVID-19 vaccine as part of their vaccination schedule, as well as to gain insights on other important issues related to COVID-19. The survey was held between 23rd March 2022 and 7th April 2022. 

Survey findings

  • There were a total of 526 responses from England, Scotland, Wales, and Northern Ireland. 
  • 65% of respondents had received a fourth dose of the COVID-19 vaccination. 
  • Over half (62%) of respondents found accessing their fourth dose to be ‘very easy’ and 59% found ‘no part of the process to be particularly difficult’. 
  • Although when it came to communication, 40% of respondents had no form of contact from the NHS about their fourth dose. 
  • With regards to access to antiviral treatments, 40% reported they had no form of contact from the NHS about the treatments, with half (50%) finding the process to get referred to a COVID medicines delivery unit (CMDU) by their GP/consultant to be ‘very difficult’.

Overall, the findings suggest people with rheumatic conditions generally seemed to have found accessing their fourth dose of the COVID-19 vaccination to be an easier experience compared to their third dose.  However, there are still persistent issues with communications for both fourth vaccine doses and  COVID-19 antiviral treatments, with 2 in 5 people reporting no proactive contact from the NHS to inform them of their eligibility.

Our call to action 

We know from previous research that people with rheumatic conditions are considerably less likely to generate antibodies after two doses of a COVID-19 vaccine. [citation] Moreover, people with rare autoimmune rheumatic conditions are at greater risk, being twice as likely to die from COVID-19 or a complication related to the virus compared to the general population [1]. Therefore, it is imperative that this vulnerable group has timely access to new and existing treatments to ensure greater protection from COVID-19 and its variants [2].

RAIRDA has identified 3 areas that must be addressed to improve the situation:

  1. For healthcare professionals to be better informed on RAIRDs and the impact of the various diseases and their treatments on immunity.
  2. Improved communication to health care providers on who is eligible for vaccines and treatments. 
  3. Accurate and up-to-date digital coding of NHS records to identify RAIRDs patients, and to have simple systems to change codes when they are incorrect. 

Next steps 

Following the results of our survey, we have taken steps to brief NHS England on the issues highlighted in our survey and are working closely with them to improve communications for people with RAIRDs. We will also raise the issue of equitable access to COVID-19 vaccinations/treatments with Maggie Throup MP, the Vaccines Minister, in an upcoming coalition meeting. 

References

  1. Megan Rutter, Peter C Lanyon, Matthew J Grainge, Richard Hubbard, Emily Peach, Mary Bythell, Peter Stilwell, Jeanette Aston, Sarah Stevens, Fiona A Pearce, COVID-19 infection, admission and death among people with rare autoimmune rheumatic disease in England: results from the RECORDER project, Rheumatology, 2021;, keab794, https://doi.org/10.1093/rheumatology/keab794
  2. National Institute for Health Research (NIHR): OCTAVE trial: Initial data on vaccine responses in patients with impaired immune system https://www.nihr.ac.uk/news/octave-trial-initial-data-on-vaccine-responses-in-patients-with-impaired-immune-systems/28529

RAIRDA launches fourth vaccination dose survey

RAIRDA and its member charities have launched a short survey aimed at all adults with a rheumatic condition in the UK. We want to understand whether those who are eligible have been able to access a fourth dose of the coronavirus (COVID-19) vaccine as part of their COVID-19 vaccination schedule as well as gain insights on other important issues related to COVID-19.

To be clear this ‘fourth dose’ is a ‘booster’ dose. You can get a booster (4th dose) from 3 months (91 days) after your 3rd primary dose. Eligibility criteria for the third and fourth dose of the COVID-19 vaccine can be found via the following link: https://bit.ly/3D0m6KR

Please only complete the survey if you have a rheumatic condition AND believe yourself to be eligible for a third/fourth dose of the COVID-19 vaccine.

Examples of rheumatic conditions include:

  • Forms of connective tissue disease (for example: lupus, Sjogren’s Syndrome, scleroderma)
  • Form of systemic vasculitis (For example: Behcet’s or types of ANCA Vasculitis like GPA)
  • Giant Cell Arteritis
  • Rheumatoid arthritis
  • Psoriatic arthritis
  • Axial spondyloarthritis (including ankylosing spondyloarthritis)
  • Polymyalgia Rheumatica

This survey will close on midnight Thursday 7th April 2022.

Safe At Work: letter to employers, March 2022

We have published a safe at work letter for people with rheumatic diseases who are located in England and are at higher risk from Covid-19 to use in discussion with their employers about how to keep safe at work, updated as government guidance changes.

We want to highlight that the Government have confirmed that, because of their continuing increased risk from Covid, people who are immunosuppressed are still advised to:

“Work from home if this feels right for you – if you cannot work from home, speak to your employer about what arrangements they can make to reduce your risk”

We are concerned that this specific guidance for immunosuppressed people may have been lost in the overall guidance changes and we therefore urge employers to continue to do all they can to support requests to work from home from your employees at highest risk from Covid. To protect those who cannot work from home, reasonable adjustments and strict adherence to risk reducing measures (set out in working safely guidance) remains as important as ever.

In the letter, we have highlighted the following key points:

  • Ask people who test positive for Covid to follow Government guidance and stay at home
  • Enable working from home wherever possible for people at highest risk who request to do so
  • Reasonable adjustments

Download the Safe At Work letter and share it with your employer as you have discussions about your safety at work.

Take action against ending free COVID-19 testing kits

Join us in calling on the UK Government to continue free tests for people who are eligible for COVID-19 treatments, their families and close contacts.

The UK Government is ending free COVID-19 tests for everyone excluding people at highest risk of severe illness from April 1st. The impact this will have, is that family, friends and carers run the risk of exposing vulnerable people to infection unless they can afford to keep paying for tests.

RAIRDA has joined LUPUS UK, Scleroderma and Raynaud’s UK, MS Society, Blood Cancer UK and Kidney Care UK as well as other charities in voicing our concerns to the UK Government in considering the needs of all higher-risk patients (like people with RAIRDs) and assessing their risk of catching COVID-19. No person should have to face being at risk because they simply can’t afford a COVID-19 test. We all have the right to be protected.

We and other charities are calling the on Government to: 

  •  continue to make adequate numbers of lateral flow tests available for free for those 1.3 million people that are eligible for Covid-19 treatments, their households and personal contacts, regardless of whether they have symptoms or not; and
  • to provide new money to the NHS and Local Authorities to continue to fund regular testing of frontline health and social care

To help us #PlanToProtect, fill out this EMAIL TEMPLATE and send it to your local MP

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