Charities call for government intervention to protect lives from COVID-19 this winter as tens of thousands of people struggle to get vital third primary jab06 December 2021 Despite guidance to offer all immunosuppressed patients in England a third primary COVID-19 dose by 11 October, around one in four eligible people with rheumatic conditions are struggling to get access to the jab The Joint Committee on Vaccination and Immunisation (JCVI) recommends three primary COVID-19 vaccine doses for people who are immunosuppressed. A booster jab would normally follow six months later.Charities warn that not administering three primary vaccine doses puts tens of thousands at risk this winter and urge government to work with NHS leaders to fix this ‘broken promise’.Research shows that people with rheumatic conditions being treated with immune-suppressing medications are considerably less likely to generate antibodies after two doses of a COVID-19 vaccine  and those with rare autoimmune rheumatic conditions are more than twice as likely to die from COVID-19 or a complication related to the virus compared to the general population  A group of national charities is calling for urgent government intervention after a new survey into COVID-19 vaccine protection uncovered serious concerns for people with rheumatic conditions. The survey , conducted on behalf of the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA), found that around one quarter (22%) of respondents in England with a rheumatic disease, whose treatment affects their immune system, are still unable to access a third primary COVID-19 vaccine dose. This is despite a national commitment to offer a third primary dose to immunosuppressed people by 11 October. Meanwhile, two in five (41%) people said they believed they received a booster jab instead of a primary dose, meaning they may not get the full protection they need from COVID-19 this winter . The charities also worry that some primary doses are being misclassified as boosters, which could prevent patients from accessing a recommended booster dose six months later. Rheumatic conditions include autoimmune diseases like inflammatory arthritis and complex diseases like lupus, scleroderma, and vasculitis, which primarily attack the body’s internal organs, such as the heart, lungs, and kidneys. Treatments for these conditions can suppress the immune system, making patients more vulnerable to infection and reducing the protection they get from vaccines. Collectively, people with rheumatic conditions make up the majority of immunosuppressed patients who have been promised a third primary dose to protect them from COVID-19. The survey, which is supported by the National Axial Spondyloarthritis Society (NASS), National Rheumatoid Arthritis Society (NRAS) and Arthritis and Musculoskeletal Alliance (ARMA), also found: More than one in three (38%) reported no proactive contact from the NHS to inform them of their eligibility for a third primary dose. Of those who had received their third primary dose, nearly half (45%) said it was much more difficult to access than their first or second.17% of patients taking rituximab, a treatment for those with very serious illness that is proven to have a major impact on vaccine protection, have still not received their third primary dose.Two in five (42%) people who completed the survey found it difficult to get an acknowledgement, or evidence from a healthcare professional to confirm eligibility in order to secure a third primary dose. Sue Farrington, Chair of the Rare Autoimmune Rheumatic Disease Alliance (RAIRDA), said: “Healthcare professionals are working hard to implement the full COVID-19 vaccination programme, but this is an immense task and those with weakened immune systems are being left behind. The JCVI published its guidance in September and in England, all patients due a third primary dose were meant to have been contacted by mid-October but, as our survey shows, there is still a long way to go. The delays and systemic confusion in deploying these third primary doses is jeopardising patients’ wellbeing and increasing their risk of serious illness and possibly even death should they become infected.” Elaine Holland, who lives with lupus, has so far been unable to access a third primary dose. She said: “It’s very scary knowing that I haven’t got much immunity as cases are rising and I hear of more and more friends coming down with COVID-19. It is also really affecting my quality of life. Things that I should enjoy doing, such as attending a choir, make me very fearful because of the risk. Why should I have to put myself effectively back into lockdown because I can’t access the third dose I am entitled to?” Elaine Holland Liz, 69, is also struggling to get a third primary dose. The grandmother of five lives with axial spondyloarthritis, a painful form of inflammatory arthritis, and her medication suppresses her immune system, reducing the level of protection she gets from the vaccine. She said: “After 16 months of shielding all I want to do is hug my grandchildren, sing in my local Rock Choir surrounded by other people and go to the gym, which helps me manage my pain. But, without the vital third jab, I can’t do the things that most people take for granted and I’m still scared of being around others. It’s weeks since I received a letter advising me that I qualify for a third vaccine, but I’ve found it impossible to get one. I’ve been to both my GP and rheumatology team, but no one seems to know who is responsible for arranging the vaccine.” The charities are calling for the government to go further in its commitment to protect vulnerable people from COVID-19 and work with NHS England and NHS Improvement to fix this ‘broken promise’ for those who are immunosuppressed. This includes: Clearer information for healthcare professionals and patients on third primary dose eligibility.The accurate recording of third primary doses to ensure people have access to COVID-19 booster vaccinations.The development of a self-referral mechanism for third primary doses on the national vaccine booking system, which will allow appointments to be booked more easily. For further information please contact Laura Gibson on 07771 933609 or at PR@sruk.co.uk. References 1. Online survey involving 1847 UK adults (aged 18+) with rheumatic conditions and suppressed immune systems, including 1581 responses from people living in England. Survey conducted by Principle Consulting on behalf of the Rare Autoimmune Rheumatic Disease Alliance between Wednesday 3 and Monday 8 November 2021. 2. 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. 3. 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 4. For some COVID-19 vaccines, such as Moderna’s, the booster is a weaker dose – half the strength of a primary dose.