New campaign launches for the forgotten 500,000 families

Kidney Care UK are highlighting the deep concern and mounting frustration within the kidney patient community as we face winter, following the decision not to provide the preventative Covid-19 treatment Evusheld for people who are immunosuppressed by their other medicines or conditions.

We are supporting the campaign to ask the Government to make a compassionate decision to grant access now and to provide access to safe and effective medical treatments to prevent these individuals from becoming sick (read our letter to the Secretary of State for Health and Social Care, Robert Jenrick).

Kidney Care UK supports the #Forgotten500k

The #Forgotten500k launches with a new national advertising campaign, kicking off a series of events and activities which includes a special podcast from Crisis What Crisis? and a Tortoise Media ‘Think In’.

On 26 October at 12.30pm in Parliament Square, there will be a Forgotten500k vigil. It will be outside and socially distanced. If you or family and friends of the Forgotten 500,000 would like to gather to represent them please let us know via [email protected]. We appreciate that this may not be possible for many, and there are strict limitations on the numbers of attendees, but we’d like to make you aware of the opportunity.

Read media coverage of the #Forgotten500k on the BBC News website.

There are approximately 500,000 immunosuppressed people in the UK who remain at higher risk from Covid-19 because their weaker immune systems mean vaccines do not work as well for them.

Some are are still shielding, still in isolation, still unable to work, see friends or hug loved ones. Others are not able to do this, but still need access to all the protection there is. The mental health toll is high. They feel unheard.

We are already seeing a widely anticipated rise in Covid-19 infections. Whilst the overall absolute risk of dying from Covid-19 has gone down, the relative risk for those with kidney disease, particularly patients with kidney transplants, increased in the third wave of the pandemic.

Donna’s husband Steve has a kidney transplant. “The most vulnerable yet again are being forgotten about, as we face our third winter of being excluded from society," she says. "However, there is a lifeline and that is Evusheld! It is already in use in over 30 countries so in order for transplant recipients to feel safe we urge the Government to do the right thing and provide adequate protection for those who really need it. People like us already contribute to the economy so why should we be segregated due to a disability? Please, it’s not too late.”

Another patient explained what access to preventative Covid-19 treatments would mean for them. "I would be able to feel safer. I would be able to live my life like everyone else. It isn’t a 100%, no, but it’s something – a chance. I’m exhausted. I’m not sure how much longer I can bear shielding – the effect on my life and my family’s is appalling."

Campaigning for clinically vulnerable kidney patients and their families

Fiona Loud, Policy Director for Kidney Care UK, said, “Patients would far rather have protection than infection. This is a missed opportunity to do that. The RAPID-C19 group is clear that there is a significant unmet need in a vulnerable population. As further protection is available and the Government has chosen not to procure it, patients for whom it is particularly important to avoid infection feel stuck.”

We share the disappointment of the kidney patient community that, despite a wealth of evidence on safety and effectiveness, the Government is choosing not to act with the same swift and decisive action regarding Evusheld which was taken with other Covid-19 treatments which were procured and made available on the NHS via the RAPID C-19 route before being fully appraised.

On Wednesday 12 October we attended the Westminster Hall debate, secured by Daisy Cooper MP, to reiterate our campaign for the Government to advance the procurement of Evusheld before the National Institute for Health and Care Excellence (NICE) technology appraisal expected in May 2023. Eventual procurement for this would come too late, after winter.

During the debate, Dr Lisa Cameron MP said, "I thank the Hon. Lady for bringing forward this vital debate on behalf of the many constituents who have contacted me and in my capacity as Chair of the All-Party Parliamentary Health Group. Does she agree that when people feel they are being left to rot, it is not only their physical health that is impacted; their mental wellbeing is crippled in the stage of recovery where they need the most support possible?"

And John Glen MP said, "My constituent asked me to be here to support the case that the Hon. Lady is making. She makes the key point: while the Government did a lot of great work to accelerate the availability of vaccines for the population at large, this particular cohort seems to be subject to a very different set of criteria. That is the great concern. While we must rely on clinical advice, we must also have the same situation for all people, regardless of their status."

Kidney Care UK have submitted evidence to NICE to make sure the voice of patients is heard during their appraisal of Evusheld. Thank you to everyone who shared their views and experiences with us. The evidence we collected demonstrates very powerful the impact Covid continues to have on the lives of many people who are less likely to be protected by the vaccine.

Evusheld to be made available privately

On 19 October it was announced that Evusheld would be available for private purchase in the UK.

People who have private healthcare may be able to access this medication through that route, depending on the provider. The medication must be given by a clinician.

The cost is not clear but could be as much as £1,600, not including the clinician's cost.

Patient and clinical questions should be addressed to the Medical Information and Patient Safety (MIPS) team at AstraZeneca ([email protected] or call 0800 783 0033).

Fiona Loud, Policy Director at Kidney Care UK, said: "Evusheld is a drug that has been approved and licensed for use in the UK. However, it is a disgrace that the only way in which this drug can be made available right now is via people paying for it privately. This will quite clearly increase inequalities, and some may feel their only hope is to find the money to be able to afford it.

"This is unacceptable, and particularly during a cost of living crisis. We continue to support the #Forgotten500k campaign to deliver preventative protection to immunocompromised people. Patients have told us time and time again that they want protection, not infection. We need the Government to listen."

Learn more about the #Forgotten500k and get involved.