Thank you to all who attended and contributed to the webinar, the eighth in our series. It covered developments in our knowledge about the Covid vaccines and how people with suppressed immune systems are responding, as well as a discussion about how to return to normal activities and cope with anxiety as restrictions ease. We were joined by four kidney doctors, Dr Rebecca Suckling from Epsom and St Helier NHS Trust, Dr Andrew Frankel and Dr Michelle Willicombe from Imperial College Healthcare NHS Trust and Professor Richard Haynes from the Oxford Kidney Unit, as well as Sarah Vickery from the Kidney Care UK counselling team. The meeting was chaired by our Kidney Care UK policy director, Fiona Loud. We would like to say a big thank you to our speakers for their advice and answering your questions.
Please do keep checking the Kidney Care UK Covid-19 guidance for updates.
Key points:
- Please continue to take precautions to reduce risk from Covid but consider the benefits to mental health and wellbeing of meeting people and going out, especially for activities and events important to you and your quality of life.
- We have made significant progress in vaccines, treatments and management of Covid, reflected in the lower numbers of people getting severe Covid, going into hospital, and dying. The new treatments are not currently available as preventative medicines but can be used in the early stage of the disease to help prevent it progressing.
- Vaccines are less effective in people who are immunosuppressed than for those who are not immunosuppressed but work better than expected in people on dialysis and with CKD. Immunosuppressed people should get the third dose and ongoing boosters that are likely to be offered to maintain protection.
- Apart from in research studies, antibody tests are currently only routinely offered to people hospitalised with Covid. This is because the result will not change the management or treatment of people in the community. It will affect whether people going into hospital are offered a drug called Ronapreve, as it works best for people with severe Covid and without their own antibodies. We are still waiting for research to tell us what level of antibodies offers a good level of protection from the disease, but studies are in progress.
- It is normal to feel anxious during this time, but there are a range of strategies to reduce and manage this anxiety, including learning which activities help distract and calm you and developing routines peppered with things to look forward to.
Summary
Dr Andrew Frankel paid tribute to scientists and clinicians whose work on vaccines and treatments have enabled us to come so far since March 2020, while reflecting that the virus has not gone away. However, while infections are still frequent, hospitalisations and deaths are much lower than in the first and second wave.
Attendees were reminded that if they develop symptoms or test positive for Covid, as well as following self-isolation rules in place for the whole population, they must tell their kidney unit, whether they are a dialysis or transplant patient. Dialysis units will need to put infection control measures in place and transplant units will want to monitor people carefully.
What is the risk to kidney patients from Covid?
Professor Richard Haynes said that people with kidney disease are at a higher risk of having a worse illness with Covid, but it’s a spectrum of risk that increases somewhat as kidney function worsens. Kidney disease is just one of many factors that can increase a person’s risk, with the strongest being age. People from Black and Ethnic Minority communities are at also at slightly increased risk, which is the equivalent of a being about six years older. Having kidney disease is similar, so the risk from Covid for a person with kidney diseases may increase to that of a person slightly older than them. This could be in the region of five years for people with stage three CKD and 10 to 15 years for people with stage 5 CKD. However, it’s important to note that it’s not inevitable that a person with more severe kidney disease who gets Covid they will become very seriously ill with Covid. The vast majority of people with kidney disease who contract Covid will feel poorly but be able to recover at home without going into hospital.
Professor Haynes also emphasised that hospitalisations and deaths are now much lower and the outcomes are better for people who do go into hospital with Covid, partly because of vaccination and treatments but also because hospitals have learnt so much about how to look after people with Covid.
Does having Covid worsen kidney function?
There is no data suggesting that the kidney function of people who recover from Covid at home will worsen. The kidneys of people with kidney disease who go into hospital are a bit more vulnerable and function may worsen, as often happens if in hospital with other illnesses. This might mean a temporary spell on dialysis, where it was not previously needed. However, kidneys will recover in most cases. If you were already close to needing dialysis, then it might be that being sufficiently poorly with Covid to need a hospital admission means you have to start dialysis sooner than you would have otherwise.
Do treatments I receive for my kidney disease affect my risk from Covid?
Regardless of the Covid 19 vaccine, a patient on immunosuppression may have a worse illness with Covid because their immune system does not work as well. The risk of more severe Covid increases alongside the strength of immunosuppression treatment, although this varies by individual and many people who are immunosuppressed are able to recover at home.
What does the latest research show about how well two doses of vaccine work?
The data that is available on antibody response to two vaccines doses shows huge variation between individuals, but overall people on dialysis and people with CKD have been responding well to the vaccine, particularly the mRNA vaccines like Pfizer. Patients who are immunosuppressed, including those with transplants, have responded less well. Just over half of transplant patients showed an antibody response after two doses. Around 60% of patients with an autoimmune disease had an antibody response to vaccine but this varied on a person’s treatment – about 25% of people taking an active treatment like rituximab had a response.
How well does the third dose work?
Since we have learnt more about who is less likely to respond well to two doses of vaccine, the focus has moved on to offer a third dose to increase this response. Dr Michelle Willicombe reminded people that the third primary dose was offered to immunosuppressed people to increase their level of protection, and can be given 8 weeks after the second dose. This is different to the booster dose which is offered to people aged over 50 (recently expanded to people over 40) or with underlying health conditions 6 months after the second, to maintain protection which may have waned. Kidney Charities Together have published information summarising this.
Interim results from the Octave Duo study, which looks at the benefits of the third dose in people who had a low or no antibody response, should be published in a few weeks and will help us understand how well people are likely to have responded. Research from countries which introduced a third dose earlier than the UK shows that the third dose gives a further boost to the immune system and approximately half of people who did not produce antibodies to two doses did produce them after the 3rd dose. It’s not possible to know in advance who will respond to the third dose.
What does the real-life data tell us about how effective the vaccines are?
Dr Willicombe explained that although laboratory tests show a generally weaker antibody response among people who are immunosuppressed, this does not give a complete picture on how well protected people are in real life. Encouraging data from the NHS Blood and Transplant registry, which collects numbers of people getting Covid and the outcomes, shows fewer people with kidney disease are now going into hospital and dying from Covid. Office for National Statistics data on people who have contracted Covid despite two doses of vaccine showed that older people and those who are immunosuppressed are more likely to get Covid than the general population, but numbers are lower than during previous waves.
Dr Willicombe highlighted that real-world data showing lower numbers of people getting very ill with Covid, even when heavily immunosuppressed, shows the importance of getting the third dose.
An attendee asked if having a third dose after seven months will mean starting over again to build an immune response. Dr Willicombe explained that the third dose will give immune memory a good kick which will just add to your initial immune response.
Should I change my kidney medication when I get my vaccine?
Dr Willicombe explained no one, including those with transplants taking immunosuppressants, should change their medication to try to improve their vaccine response. This is because of the risk of a rejection episode, which would then necessitate even greater immunosuppression. It may be worth having a discussion with your clinician about your own circumstances, but there is no evidence that transplant patients should do this. If people are going to be starting immunosuppression soon, e.g., for a planned transplant, it is recommended that Covid vaccination is brought forward so that people can get the maximum chance to build their response before being immunosuppressed.
How does previous Covid infection affect the effectiveness of vaccines? Should I still get the third dose?
Having had Covid increases the likelihood of a higher antibody response to vaccines and people who have had Covid should still get their third dose. Future reinfection is possible and having had the vaccine will give you the best protection.
Will my level of antibodies protect me from Covid?
Dr Willicombe explained we don’t currently know what antibody level gives you optimum protection. What we can say is that if you do not have any antibodies you are probably not protected, but it would still be sensible for people with a high level of antibody levels to remain cautious. This is particularly because of the risk of variants, which might bypass vaccine protection.
Dr Willicombe said how much you went out and about was an individual decision, but she advised that if you are taking precautions like increasing ventilation in indoor areas and following social distancing, and the people around you are vaccinated, you do not need to lock yourself away because its risks harming your mental health.
Does vaccination reduce transmission of Covid?
Transmission is less likely among people who are vaccinated. So if people in your household are all fully vaccinated then this will help to protect people who are immunosuppressed.
How soon after a transplant should I get the third dose of vaccine?
Ideally people should have their two doses of vaccine pre-transplant, before immunosuppression begins, as it will protect you in the post-transplant period. The timing of the third dose after a transplant will depend on the individual and the treatment they are receiving, so you should speak to your transplant team about this.
Can I get an antibody test to check my response?
People in the community are not currently routinely offered antibody tests because the test result will not change their management or treatment. People who are admitted to hospital with Covid will have their antibodies tested because a treatment called Ronapreve is only offered to people who have not produced their own antibodies, as this is group who benefit from this drug. It is unlikely that antibody tests will be offered to people in the community until a time when it might affect their management.
There are a number of research studies which measure the antibody levels of participants and may share some information with them. This includes the Virus Watch Study and another large study which will be announced soon. These studies will give a helpful insight into how antibody levels correlate with protection from the virus.
Treatments for Covid
Professor Haynes gave an overview of the many new treatments that have been developed and are aimed at different phases of the disease. Vaccines are at one end of the spectrum to prevent people getting the disease in the first place. There are also monoclonal antibody treatments, which are already used for a range of other diseases, that can be used at different stages of Covid. These have been developed by looking at the many different types of antibodies produced by the human body following a Covid infection and selecting the ones that are best at killing the virus. Scientists then work out how to manufacture them in the laboratory.
Monoclonal antibodies can be given as a preventative treatment to kill off the virus if you get infected, with each dose giving about eight weeks protection. They can also be given to people in the very early stages of infection, before they become very unwell. The treatment will reduce the chances of the disease progressing and that person going into hospital. Monoclonal antibodies can also be used to treat people who have got more unwell and been admitted to hospital.
Ronapreve, as mentioned above, is one of the first monoclonal antibody treatments used against Covid. The NHS are currently offering it to hospitalised people who do not have their own antibodies. This includes everyone aged over 50 and those aged 12 years and over who are immunocompromised. The National Institute for Health and Care Excellence (NICE) have not decided whether it should be used in prevention or in early stages of the disease. Monoclonal antibodies probably do work in these scenarios, but are relatively expensive treatments and there are much larger numbers of people in the first two groups. This means it would be quite hard for the NHS to afford this treatment option, particularly when you factor in the repeated doses that would be needed for ongoing protection. It is a difficult balance between spending a lot of money to prevent a relatively small number of people becoming ill or spending that money on preventing worse illness in people who are already ill. In addition, antibodies are quite difficult to make and it is difficult for manufacturers to keep up the supply to treat the most ill people.
Antiviral treatments are a second group of medicines to fight Covid. These can be tablets you can swallow rather than injections into the skin or infusions into the vein. Two have made the headlines recently and are new since we last spoke. Monupiravir was originally developed for flu but seems to be quite effective for people who have recently tested positive for Covid and are still at home. It seems to help prevent people from having to go into hospital. The Government has bought about 500,000 treatment courses and has to decide how to use them. There are still about 40,000 people catching Covid everyday, so there will not be enough of these treatments to give them to everyone and the NHS will have to prioritise. It is likely that vulnerable people like kidney patients will be high up the list. Another antiviral drug made by Pfizer also looks promising for preventing people who have caught Covid from developing severe illness.
Will I need ongoing boosters of vaccine?
Dr Frankel explained that we will probably need boosters till Covid becomes a less serious illness and he strongly recommended that people should have boosters when offered. There is no risk of toxicity building up after multiple vaccinations, in fact they will work to strengthen your immune response.
Vaccines act to boost and work alongside your natural immunity, rather than preventing you from building up your own natural immunity.
Would it help to keep immunosuppressed people safe if their household members get the booster sooner than six months after the second dose?
Research has shown that antibody levels start to drop about six months after the second dose. From that time, people may get infected but are less likely to become as ill as they would have done without the vaccine. Sufficient protection remains at six months to make it unnecessary for household members of immunocompromised people to get their booster early.
Can I get my flu jab at the same time as a Covid vaccine?
Fiona reminded everyone to get their flu jab, which you can have at the same time as the Covid vaccine or any combination of days apart.
What should I do to keep myself safe?
Professor Haynes spoke of the spectrum that exists between completely safe and extremely dangerous and how we all have a different level of risk along that spectrum that we find acceptable. Although the risk of catching Covid does exist, there are other things to consider when coming to a decision about what precautions you take, and it is not an absolute that you will catch Covid or become very ill. The impact on mental health and potentially physical health of not leaving your house must be considered. When thinking about whether you feel comfortable doing an activity, you should weigh up how important it is to do the thing in question and balance this with any potential risk.
The risk you are happy to take is likely to vary depending on the importance of the activity, for example you might feel prepared to go to your daughter’s wedding but not something less important to you. And think through everything that you can do to minimise risk – this includes maintain social distancing where possible, meeting outside or in well ventilated places, asking if people could do lateral flow tests before meeting, wearing masks, washing hands, and travelling off peak. Richard advised to keep being cautious but don’t lock yourself away, and balance the risk with potential benefits as you do with other activities.
Workplace safety
Whether it is safe for you to go back to work depends on how your workplace is set up and how you travel to get there. You will have to consider how you can reduce any risks and speak to your employer about this. For example, if your job allows it, you might ask your employer if you can split your week between working from home and working in the office, which means you can meet with your colleagues as necessary but do not have to be in the office every day.
Kidney Care UK has a range of information about workplace safety and organisations to contact for more information or if you have any concerns.
Should I be wiping down my internet shopping deliveries?
Early on it was thought that the virus could survive on surfaces, but now we know the virus is spread mainly via airborne transmission. This means it is less important to do things like wipe down an internet shopping delivery although it is of course best to keep your food surfaces clean.
The final session of the webinar featured Kidney Care UK counsellor Sarah Vickery speaking to our policy director Fiona Loud.
What is the best way to deal with anxiety created by the Covid pandemic?
Sarah explained that we deal with anxiety all the time and it is very normal to feel anxious at times. But since the pandemic has started most people’s baseline anxiety has gone up because we feel like so much is out of our control. There are constant news broadcasts and lockdowns gave us time for us to focus on anxiety. So we need to think how we can reduce our base rate anxiety to help us cope better day to day. How we do this is different for everyone, but can include exercise, breathing techniques, and spending time with friends and family. Running helps Sarah dissipate tight pent-up feelings and there are many things that work in the same way that do not require the same level of fitness, for example going for a walk or doing a muscle relaxation exercise. Talking books take Sarah out of her own head and into someone else’s world so it stops her from going over and over worry and ruminating. It provides a distraction. Again, there lots of ways of distracting and calming yourself, such as watching a film, building a model aircraft, or playing a computer game. It’s important to think about what works for you. If you feel yourself becoming anxious or that you mind is beginning to dwell on things then do whatever works for you to refocus. Other things include knitting a Christmas jumper, organizing the family holiday photographs into an album, or planting up some bulbs for next spring. Understanding which activities to do to distract and calm yourself gives you back control by learning to recognise when anxiety is rising and doing something about it.
It is also really important to recognise what you have already achieved. We are coming into our second full year of this pandemic and you are still here. You have coped with kidney disease as well as the pandemic. You are managing and you can do this.
I’m still shielding and planning to do so over winter. This is making me feel pretty low and hopeless, what can I do to help myself cope emotionally with this?
It would be foolish to deny that another winter shielding is a very depressing prospect and Sarah suggested any kidney patients considering this need to think about looking after their mental health as well as their physical health. People need to do what feels comfortable for them but if the prospect of continued shielding makes them feel low and hopeless it suggests that doing so is not working for their mental health. What they might like to do is consider what can they do differently and still feel safe.
It is important to remember that we are in a different place now than we were last year. Last November there were local lockdowns and some of us weren’t able to see friends and family. That is not the case this year. This year we have vaccines, new treatments and lateral flow tests available. So we are a bit better armed. With this in mind Sarah suggested that if seeing your grandchildren, girlfriend or best friend is going to give you a boost but also concerns you, you can use tools like lateral flow tests and keeping the area well ventilated to help reassure you.
Routines and planning activities to keep your spirits up
Sarah reflected that sometimes when we are feeling low our motivation to do things is lower and we can see all the barriers to doing things and it becomes easier not to do them and the less we do the less we feel like doing. Very often counselling clients who are feeling low tell her they have nothing to look forward to. It’s really important to have something to look forward to and getting a routine in place, peppered with things to look forward to, can elevate our mood. It does not have to be anything grand like going on holiday, and could be having your friend around to watch the football or meeting someone for a walk and a coffee. Going to bed and rising at similar times and keeping a daily routine is also important. This sort of structure helps us avoid the cycle of doing less and then feeling like doing less.
Is it normal to feel anxious in crowded situations like public transport. What can I do to calm myself?
Sarah reminded us that anxiety is a normal part of life and it is normal to be anxious during a pandemic in a crowded place, especially with an underlying health condition. As discussed by the panel of doctors, if you can avoid rush hours then it is wise to do so, but if you have to travel on a busy train or bus you can manage your anxiety by thinking about what you can control. You can wear a mask and wash your hands. You can distract yourself by listening to music or reading a paper. You can do a breathing exercise. And it is important to try to avoid black and white thinking. It is not a foregone conclusion that by travelling on a public transport you will get Covid. When we are anxious we often focus on the worst, so try not to give yourself negative messages. Instead, remind yourself that you are wearing a mask and keeping yourself safe and you are still here after nearly two years of Covid. In response to a comment by an audience member Sarah also commended practising mindfulness techniques so that we can employ them at any time. We have information on the Kidney Care UK website on this way of focusing on the present, in the ‘Living with Kidney Disease’ section https://www.kidneycareuk.org/about-kidney-health/order-or-download-booklets/.
Fiona thanked the panelists and reminded everyone to keep checking Kidney Care UK’s online Covid-19 guidance, which is updated regularly.
- Please keep checking the Kidney Care UK Covid-19 guidance for updates and further webinars
- Please see Kidney Care UK’s guidance on managing anxiety and fear.
- Please get in touch for general support, advocacy, counselling or grants
