The 'end of Covid-19' self isolation measures - where's the plan?

Future roadmap

We’ve heard that the Prime Minister may bring forward the end of Covid-19 self-isolation rules in England later in February and that these would be replaced by guidance. We recently wrote to every MP to outline some of the things which will be needed to protect and support people with kidney disease at this time and as we move into the weeks and months ahead. Our views remain as they were last month – we need to see a plan.

We want to see the scientific evidence on which this decision is being made as there remains uncertainty for the future. The continued monitoring of infections and readiness for protective measures to be available if further variants develop is vital.

Fiona Loud from Kidney Care UK said “We are worried about the government’s plans to remove Covid-19 self-isolation rules. We urge the government to show some commitment to 500,000 immunosuppressed people by sharing their plans, and the evidence for this decision. Abandoning all measures without preventive treatments, free lateral flow tests, and a duty not to expose immunosuppressed people to Covid unnecessarily risks making us into second class citizens. Despite Omicron being a milder illness for the general population, there remains uncertainty about future variants, further impact on higher risk groups; with a record of really poor communication this will make things harder and increase anxiety for people with kidney disease who have already spent two years under Covid-19 stress.”

It is going to take much longer for people who are especially vulnerable to Covid-19 to somehow learn to live with it. This will not happen without further support. People with kidney disease are extraordinarily resilient but they have had a very hard time during the pandemic. A paper from the UK OpenSAFELY study showed that, unfortunately, the rates of hospitalisation and death in those living with late stage kidney disease, on dialysis or with a transplant have been higher than in many other health conditions. Reassuringly, the third primary vaccine dose and the booster dose have changed this picture for some and so we continue to encourage you to have your vaccinations.

Those of us who are clinically extremely vulnerable are encouraged to keep our distance, stay very cautious and get boosted. But we have done nothing but stay cautious over the last two years; shielding advice was observed scrupulously but has now been simply dropped, although the vulnerability has not magically disappeared. As the OpenSAFELY study shows, this is a group that requires specific and tailored support. Now even the name has been quietly dropped and conveniently forgotten; it is, after all, inconvenient to admit there are hundreds of thousands of people, who don’t fit the ‘ride it out and take sensible precautions’ mantra.

Kidney patients and the many other clinical extremely vulnerable people need:

• Pre-exposure protection. The rollout of antiviral treatments is extremely welcome for people with kidney disease. However, rather than exposing people to the risk of Covid-19, we’d like to see the government pursue a policy of pre-exposure protection. We have been told that there are no such considerations in the UK. However, if we all need to live with Covid-19, we need a transparent debate about the potential for preventative treatments and all avenues pursued to support a prevention-rather-than-cure approach in people for whom the current vaccines are less effective.
• Clarity on whether immunosuppressed people with kidney disease can continue to work from home if possible and as previously confirmed by government, despite the end of Plan B and as outlined in our ‘Safe at Work’ letter, supported by 20 other UK charities.
• Public recognition by our politicians that we exist and continue to need support, with updated information sent to each of us directly. Many are staying away from others, or effectively shielding but without any support. For months we asked that people with kidney disease should be given some constructive information and advice. Late on Christmas Eve, finally some updated guidance for the former clinically extremely vulnerable group and new guidance for people who are immunosuppressed was published. It simply summarises the need to be cautious and links to the vaccination and antivirals programmes. This needs to go further and everyone affected should receive written communication.

We have also asked a number of MPs to ask parliamentary questions and are grateful for that Dr Phillipa Whitford MP raised this one:

“To ask the Secretary of State whether the Government will consider introducing a policy of pre-exposure protection using new and emerging monoclonal antibody and antiviral treatments for immunosuppressed people such as those with kidney disease who remain vulnerable to Covid-19 despite receiving a vaccination, and if he will make a statement.

Answered on 31 January 2022:

Immunocompromised individuals are a priority cohort for research into therapeutic and prophylaxis treatments, such as monoclonal antibody therapies and repurposed compounds.  The RAPID C-19 collaboration has enabled active multi-agency oversight of national and international trial evidence as it emerges for Covid-19 therapies, both in potential treatment and prophylactic indications. Where material evidence is identified, this has enabled the rapid formation and implementation of United Kingdom-wide clinical access policies. The RAPID C-19 collaboration actively reviews all promising compounds. To date, the evidence has most strongly supported treatment use, but the evidence around prophylactic use will continue to be actively reviewed."

There is more that can and must be done to provide protection and support. This is not an intractable problem, there are clear and immediate steps that the Government can take to address these problems. Sadly, there is a likelihood that more people will continue to be significantly affected and unable to have surgery or a transplant, because their health has deteriorated so much during the pandemic or because they are not as well protected from Covid-19. The reality is that it is simply not possible to just move on and ‘live with it’.

What happens next?

The government plans to present its strategy for living with Covid-19 on 21 February. In the meantime we will continue our work to represent those most affected – thank you for letting us know what your views are.

Background

Whether due to the kidney disease itself or to the medication we take, people with kidney diseases are clinically extremely vulnerable to Covid-19. That is why they were identified in 2020 as Clinically Extremely Vulnerable (CEV) and recommended to shield for a substantial period of time. Shielding was advisory but offered a structure of furlough support, targeted communications, food and volunteer support. It was paused in mid-2021 and completely disbanded in September 2021

The vaccination programme provides a lot of hope for people who are vulnerable and indeed vaccination offers some protection against Covid-19, but not the same level of protection as it does for someone who does not have kidney disease.

Those who are immunosuppressed (which includes people with kidney transplants and some with kidney disease on immunosuppressive medications) were recommended by the JCVI on the 2nd of September for a third ‘primary’ dose of a Covid-19 vaccination. This was because it was recognised that 2 doses were not going to make a strong enough antibody response and this is borne out by studies such as OCTAVE and one by NHSBT and the UK HSA. The third primary dose rollout was communicated very poorly and fraught with issues that has meant that still, in January 2022 (4 months after the JCVI made the recommendations we still have patients who have found it almost impossible to get a third dose. In December 2021 further guidance came out recommending a booster for this same immunosuppressed group three months after the third primary dose. For those who did manage to get a third primary dose in September or October this means that they are due now. While people can now book online there are plenty who will not have received their fourth dose yet and these barriers along the way have been highly regrettable.