Lack of awareness of Covid-19 protection puts up to half a million at risk

• Charity coalition calls for clear UK Government roadmap for those at risk as we head for ‘freedom’
• Public urged to do their bit and consider the needs of others
• More employment support needed so no one is forced to choose between protecting their lives and their livelihoods.

With just over a week to go before the so called ‘Freedom Day’ in England, a coalition of 16 health charities are calling on the Government to do more to support around half a million people(1) who are immunocompromised or immunosuppressed, and so may be less protected by the Covid-19 vaccine(2).

YouGov data(3) released today shows that over two thirds (68%) of UK adults are not aware that people who have certain health conditions, or who take specific medication, are not as protected by both doses of Covid-19 vaccine as effectively as the general public. The coalition of patient organisations are concerned that many immunocompromised or immunosuppressed people have not been informed that they may still be more vulnerable to Covid-19 post-vaccination, and awareness of this issue amongst employers and the general public is also low.

With the Government removing any legal requirements in relation to mask wearing, and urging people to exercise their own personal responsibility, the coalition is concerned that the public and immunocompromised will not be able to make informed choices about their behaviour. In order to exercise personal responsibility, people need to have all the relevant information regarding both their own risk level and the risks faced by other people who may not be protected through vaccination.

Now that the Government is telling people that, as of 19 July, they no longer need to work from home and that decisions regarding working arrangements need to be agreed between employers and employees, there are also concerns that employers are not aware of the fact thousands of people could still be at higher risk due to having an existing health condition or receiving certain treatments.

The coalition are calling for:

• Improved Government/NHS communications to patients, the wider public and employers about the potentially higher and continued risk Covid-19 poses to immunocompromised groups. This should include a clear roadmap for people who may not be well protected by the vaccine and who continue to be at risk from Covid-19.
• Continued employment protection and access to workplace adjustments for immunocompromised people, including the duty to consider working from home wherever possible or flexibility in start and finish times so as to avoid peak-time travel, so no one is forced to choose between protecting their health and protecting their livelihood.
• A commitment that research into Covid-19 booster vaccines, and the development of the planned booster programme more broadly, will specifically consider how best to deliver the maximum level of protection possible to immunocompromised or immunosuppressed people and that these groups are prioritised.
• Investment in and access to alternative treatments which may prove more effective for immunocompromised groups.

Speaking on behalf of the coalition, Fiona Loud, Policy Director at Kidney Care UK said: “We of course understand and share the desire to return to something close to normality again, but this cannot be at the expense of thousands of lives. The needs and safety of those at risk must be considered as a matter of urgency as the country lifts the measures which were providing some protection for them.”

We need better communication so that those who may not be as well protected by the vaccine can make informed decisions about their own personal risk. Everyone needs to understand how they can continue to protect those that remain vulnerable; any one of those 500,000 people could be your mum, your brother, your colleague, or your best friend.”

Sarah Hemmings, 34, was diagnosed with highly active relapsing MS in 2019. She lives in Norwich with her husband and their two children Eva, 4, and Ralf, 2. Due to the pandemic, Sarah is currently on an extended career break from teaching. She is on disease modifying treatment (DMT) Ocrelizumab to manage her MS symptoms, which include fatigue, sensory symptoms, and speech and concentration difficulties. Despite being fully-vaccinated, a recent antibody test has shown she hasn’t developed any COVID-19 antibodies.

She says: “What I really want is for the Government to do what they haven’t managed to do yet – consider this huge group of immunocompromised people. If they are focused on economic reopening, why not keep masks and social distancing so that more people can participate in society? If they are concerned about individual freedoms, why is mine and that of people in similar situations being curtailed? Does the value of not being mildly inconvenienced by wearing a mask really outweigh the value of lives like mine?”

(1) now there are approximately 500,000 who are immunocompromised or immunosuppressed. This means that, due to a specific health condition or because they receive certain treatments, they have a weakened (compromised) or impaired (suppressed) immune system.

(2) Important research studies into the efficacy of the vaccine in immunosuppressed people are due to be published imminently. Early findings have indicated that while there will be different levels of protection depending on someone’s health condition or medication, overall these are lower in relation to the general population. These include: The SOAP vaccine study that highlighted that an antibody response was only seen in 13% of people with blood cancer after the first dose, compared to 97% of people without cancer. The CLARITY study found that 1 in 5 people with inflammatory bowel disease taking infliximab did not make a good level of antibodies after two vaccine doses or where they had one vaccine dose and had previously been infected with coronavirus. This Systematic Review of Early Immune Response to SARS-CoV-2 Vaccination Among Patients with Chronic Kidney Disease summarises existing research being carried out in relation to vaccines and kidney patients.

(3) All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 2,224 adults. Fieldwork was undertaken between 2nd - 4th July 2021. The survey was carried out online. The figures have been weighted and are representative of all UK adults (aged 18+). When asked the following question: ‘According to some healthcare organisations, people who have certain health conditions or take specific medication are not protected by both doses of a Covid-19 vaccine as effectively as the general public. Were you aware of this before taking this survey?’ 65% answered ‘no’, 3% answered ‘don’t know’ and 32% answered ‘yes’.

The full list of charities is as follows:

• Anthony Nolan
• Arthritis and Musculoskeletal Alliance
• Blood Cancer UK
• Bowel Cancer UK
• Crohn’s & Colitis
• Cystic Fibrosis Trust
• Immunodeficiency UK
• Kidney Care UK
• Leukaemia Care
• MS Society
• Muscular Dystrophy UK
• National Voices
• NRAS - National Rheumatoid Arthritis Society
• Scleroderma and Raynaud's UK
• Vasculitis UK
• Versus Arthritis