Thank you to all who attended and contributed to the webinar, the seventh 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, Dr Steve McAdoo, and Dr Michelle Willicombe from Imperial College Healthcare NHS Trust. We would like to say a big thank you to them for their advice and answering your questions.
Please do keep checking the Kidney Care UK Covid-19 guidance for updates.
Dr Andrew Frankel began by recognising the very difficult time kidney patients have had during the pandemic, which seems to be moving into its latter stage. Three major areas that have moved on since the last webinar include the emergence of a new variant, the very successful vaccine rollout, and how kidney patients can begin to return to normality with confidence as we emerge from lockdown.
- Current risk from Covid – for CEV and also those in earlier stage CKD
- Children with kidney disease – risk from Covid and plans for vaccination
- The Covid vaccine has no adverse effect on kidney function
- What has research shown so far about how kidney patients respond to the Covid vaccine?
- How antibody response is affected by medication and previous Covid infection
- Current vaccine studies
- Should I get an antibody test?
- Will kidney patients be offered a third dose?
- Additional ways to fight Covid
- Keeping safe at work
- Keeping safe when returning to normal life
- Coping with anxiety about getting back to normal life
- When will it be safe to travel?
- Government communications
- Flu jab
- What next?
1) Current risk from Covid – for CEV and also those in earlier stage CKD
Dr McAdoo explained the Delta variant is now the dominant variant in the UK. It transmits more easily between people and there is some suggestion it increases the risk of people with Covid needing to be in hospital (although people currently being admitted to hospital with Covid have more mild symptoms than people hospitalised during previous waves).
There is no data to suggest that the Delta variant poses a more severe risk for kidney patients, but as with other variants, the risk of severe disease from the Delta variant of Covid increases as the severity of a person’s CKD increases. The risk increases particularly after CKD stage 3. Therefore, people should continue to follow measures to reduce their risk, even after vaccination. We know that one dose of the vaccine is not quite as protective against the Delta variant, but two doses gives good protection for the general population against serious illness from the Delta virus.
2) Children with kidney disease – risk from Covid and plans for vaccination
Dr McAdoo reassured us that children, including children with kidney disease, are far less likely than adults to develop severe Covid or complications from the virus. Dr Suckling explained that kidney doctors looking after children now tend to consider only a very small group of children with kidney disease to be clinically extremely vulnerable (CEV). This would generally be children in the first three months post-transplant or those on high-dose steroid therapy (daily) together with another potent immunosuppressive agent such as MMF, for example. Kidney doctors will recommend that children and young people in this group self-isolate. Anyone with questions about their child’s care should speak to their doctor.
Doctors who look after children and young people follow the advice of the JCVI (the vaccine committee) which does not recommend vaccination for children under 16 years of age as there is very low risk of severe disease or death compared to adults and currently the safety data is not yet available to recommend vaccination. This may change in time as the JCVI constantly reviews new data. The vaccine is currently offered to people aged 18 and over, although young people aged 16 and over who share a household with someone who is immunosuppressed are eligible for the vaccine. The panel strongly recommend these household members take up the offer of a vaccine.
3) The Covid vaccine has no adverse effect on kidney function
Many thousands of people with solid organ transplants, of which many are kidney transplants as the most common type of organ transplant, have received the Covid-19 vaccine. This has not shown any adverse effect on kidney function or complications, for example rejection. It remains that case that kidney patients are at increased risk of becoming very unwell or dying if they do contract Covid and two doses of the vaccine provides an excellent layer of protection against that risk.
4) What has research shown so far about how kidney patients respond to the Covid vaccine?
Dr Willicombe gave an overview of findings from laboratory studies which measure the level of antibodies in the blood, following vaccination. People with kidney disease who do not receive immunosuppression have been shown to have a good antibody response, whilst those on immunosuppressant drugs have weaker responses. This is to be expected, because of how immunosuppressant medication works, but does not mean to say that the vaccine is not effective at protecting people. Dr Willicombe explained that people taking immunosuppressants also produce less antibodies following their flu jab, but each year the flu jab protects people from developing severe flu and going into hospital. Antibodies are only one facet of the immune system and don’t give the whole picture of the immune response.
While the laboratory findings tell us about antibody response, it will take a bit longer before we know how much being vaccinated reduces the risk of kidney patients developing severe Covid and going into hospital. It will take time to collect enough data on this because fortunately there is a much lower number of kidney patients becoming infected with Covid since the vaccine rollout. Reassuringly, we are seeing a significant reduction in the number of kidney patients who have received their vaccination getting very ill with Covid and going into hospital with the disease. Routine testing of haemodialysis patients is picking up some infections, but these are often asymptomatic.
In terms of differences between vaccine brands, Dr Willicombe explained that laboratory studies within the general population found the Pfizer vaccine led to a greater antibody response and the AstraZeneca produces more of T-cell response. Antibodies and T-cells responses are two different parts of the immune system and both play an important role in protecting against severe disease. Having good responses of either can protect you against severe Covid.
While they may work in slightly different ways, both the Pfizer and AstraZeneca vaccines have been found to be equally effective in preventing infection, severe disease and hospitalisations among the general population.
The effectiveness of the vaccine in reducing Covid infections in the general population is really good news for kidney patients, because it means the virus is far less widespread in the community and kidney patients are far less likely to catch Covid.
However, very sadly some people will still become severely ill or die from Covid-19, even after they have had both doses of vaccine. This is because although the vaccines are highly effective at preventing severe disease and death, they are not 100% effective at stopping it. So therefore there will be a very small number of people who get very ill or die with Covid.
Dr Frankel answered a question from a person with dialysis who continued to test positive for Covid for a number of weeks. This does not necessarily mean that person still has an active infection, as the test may be picking up fragments of dead virus. However, it’s likely that a dialysis patient who has had Covid infection will take a good few weeks to feel better, although there is no reason why they won’t rehabilitate and they should try to do a little bit more each day and give themselves time to recover.
5) How antibody response is affected by medication and previous Covid infection
The stronger your immunosuppressant medication you less likely you are to have an antibody response to any type of vaccine and this is reflected in the Covid vaccine data we’ve seen. Specific studies have shown people taking certain combinations of immunosuppressant drugs, eg Belatacept and Mycophenolate mofetil (MMF), have lower antibody response than healthy people. Despite this effect, no one should adjust their medication before talking to their doctor. This is extremely important for transplant recipients because reducing immunosuppressant medication puts their transplant at risk.
The audience was reminded of guidance that people who are about to start immunosuppression, for example who have a planned living donation, should have both doses of vaccine beforehand. This is because they will mount a better response to the vaccine before they start this medication. More information is here.
People who have previously contracted Covid infection should still go ahead and get both doses of vaccine as they could get it again. They will have some immune response from the infection, but this will be strengthened by having both doses of the vaccine. You should wait 4 weeks from the date you have the positive Covid test before you book an appointment.
6) Current vaccine studies
Dr Willicombe spoke about current vaccine response studies. Data from the kidney workstream of Octave, a UK study of vaccine efficacy amongst people with long term conditions, will be published soon. So far the researchers have looked at the blood test results in the laboratory, rather than the clinical data on how many kidney patients are getting severe disease.
A second study of vaccine response (funded by Kidney Research UK, National Kidney Foundation and other kidney patient charities – see here for more information) in people on haemodialysis is the first to look specifically at neutralising antibodies, which are likely to be a better guide to the level of protection as these antibodies coat the virus to prevent infection.
Kidney patients can ask their doctors about participating in trials, but it may not be possible for all units to get involved because of limitations in funding.
7) Should I get an antibody test?
There are no plans currently to rollout antibody testing for kidney patients post vaccination. The panel recommended patients should not have an antibody test outside of a research study, either from the private sector or via your GP.
Firstly, it will be very hard to understand what the test results mean in terms of your protection. Different tests test for different antibodies, some just tell you whether you have had Covid in the past, some will give a yes/no answer as to whether you have any antibodies, others will give you a level of the specific antibodies that the test measures. It would be difficult to interpret this information in terms of your level of protection.
Secondly, immunity isn’t straightforward and there are different aspects of the immune system, including antibodies and T-cells. We measure antibodies because they are fairly straightforward to measure, while T cells are more difficult to measure. But antibodies are not the full story and we don’t yet know what level of antibodies are protective against severe disease.
Therefore, an antibody test is not yet useful in terms of guiding your behaviour or explaining your level of protection. We are measuring antibodies in research studies because by comparing this laboratory data with numbers of people becoming ill, we hope to learn what level of antibody indicates a person is protected from severe illness. Then we might be able to start recommending people get antibody tests, but we’re not there yet.
Until we know what level of antibodies gives a good level of protection from severe disease kidney patients should continue to behave as if they have no protection and we return to this later in the session. The panel recognised that it is likely to be very frustrating to have to wait longer for evidence about the level of protection and guidance for behaviour, but the research community is working tirelessly to get these answers for patients and their families.
8) Will kidney patients be offered a third dose?
Vaccine responses wane over time, which is why we have annual flu jabs, so we expected booster doses of Covid vaccines would be required. Prioritising people with reduced responses, such as transplant recipients, for third doses is likely to be sensible. Dr Willicombe will shortly hear whether her team have secured funding for a study on how people with kidney disease and other long term conditions can get the best protection from the third dose. The findings would inform policy on what vaccine to give as a booster and how to deliver it safely. The JCVI (Joint Committee on Vaccination and Immunisation) will develop evidence based advice that guides government policy on how the third dose would be delivered and it would likely to along similar lines to the current vaccine rollout programme.
Post webinar update, the JCVI on 1st July announced interim advice on plans for a booster dose of vaccines starting in September, with immunosuppressed and clinically extremely vulnerable adults likely to be offered their dose first.
9) Additional ways to fight Covid
Knowledge of how to treat Covid has advanced hugely over the last year and we continue to research new treatments to battle the virus. One new treatment which is showing promising results, particularly for people who have not mounted a strong antibody response after vaccination, is based on treating people with severe Covid with neutralising antibodies.
In terms of protecting against infection, the Protect-V trial will test a range of interventions which may prevent kidney patients from catching Covid. It is currently assessing the benefits of a nasal spray which delivers a medicine currently used to treat tapeworm infection but which may also have activity against Covid.
10) Keeping safe at work
It is still really important that clinically vulnerable people who go out to work have Covid-secure workplaces. Fiona highlighted the “SafeAtWork” coalition, which wrote to all employers to remind them of their duties to maintain safety measures at work particularly for people who may remain at higher risk from Covid. People with kidney disease may like to download the letter from Kidney Care UK’s website and share with their employers.
Dr Frankel highlighted that people should ask for a risk assessment and for any issues arising from that process to be dealt with before they return to the workplace. If you have access to an Occupational Health team at work, you should ask them for support with risk assessments and appropriate adjustments. If employees face any difficulties they could approach their kidney doctors who may be able to write to employers.
Other avenues for support with returning to work include Unions, ACAS and Kidney Patient Charity support services and websites.
In addition to the adjustments that your employer may put in place, Dr Frankel reminded attendees that they should think through all the protective behaviours that they can adopt to reduce their risk, such as having two doses of vaccine, mask wearing, keeping a safe distance from others, keeping indoor spaces well ventilated, frequent handwashing, and travelling at quieter times if that is possible.
11) Keeping safe when returning to normal life
Advice that clinically extremely vulnerable people should shield is no longer in place and people can resume social contact and activities, whilst following government guidance for their area. But it still important that people with kidney disease do so carefully and continue to take precautions, even after restrictions ease further as is currently the plan for 19th July.
When you are thinking through the measures that you could adopt, the panel advised you should consider your own individual risk from Covid 19, as this varies considerably between kidney patients. Things that reduce risk include younger age, less severe kidney disease, and fewer co-existing health conditions. (You may find it helpful to read this blog from Dr Tony Williams on assessing personal risk of Covid and tools that can help with this. Infographics here illustrate which kidney patients are at greater risk from Covid. You can also discuss individual risk with your renal team who can help you think through your own situation.)
If you feel you are in a higher risk category, the panel suggest that once restrictions ease, as far as is practical for you, you may wish to try to follow the measures we have all become used to. This means keeping 2 metres from people who are not part of your household, frequent handwashing, and wearing a mask. It is also very strongly recommended that immunocompromised people encourage their household members, aged 16 and over, to take up the offer of vaccination as this will provide an important layer of protection.
Where possible, people with kidney disease at high risk from Covid should try to avoid high risk environments, such as areas with a high prevalence of Covid, indoor spaces with poor ventilation, or where people tend to be crowded together and social distancing is difficult. For example, having lunch in a pub garden would be better than eating indoors in a busy pub, or you might choose to go shopping when you know the supermarket will be quieter, if that is possible for you. Or you may choose not to visit a town where you know the infection rate is particularly high. See here for a postcode search tool.
In terms of meeting up with people, it is sensible to continue to keep a bit of distance and to keep indoor spaces well ventilated. If you are meeting adults who are not vaccinated, you might choose to meet outdoors.
Lateral flow tests can be a helpful tool, as they can help identify people who have Covid but do not have symptoms. However, they are not as reliable as PCR tests (which you should only take if you have Covid symptoms) so risk reducing measures should still be followed even if a person you are meeting has had a negative lateral flow test.
12) Coping with anxiety about getting back to normal life
Dr Frankel spoke about the anxiety some kidney patients are feeling with regard to the easing of restrictions and rejoining society, whilst others may be looking forward to it. He encouraged those who are apprehensive to give themselves permission to feel a bit anxious. Meeting friends and family and resuming activities is a very positive thing to do, but no-one could be expected to forget the very difficult time that they have been through over the last 16 months, so people should go at their own pace.
People feeling worried can choose to return to normality gradually and slowly, whilst maintaining the measures we know can minimise risk of infection. Planning trips out and social occasions in advance, to avoid high risk environments and follow risk reducing measures, can help people feel more prepared and comfortable with what they are doing.
13) When will it be safe to travel?
In terms of travelling, it might be some time before mass international travel is up and running again. Government rules regarding permission to travel as well as quarantining are in place here in UK as well as in the country of destination. It may also be helpful to speak to your doctor about the risk from Covid in the country you are thinking of travelling to.
Haemodialysis away from base within the UK is still very limited, and we hope that this will change over the coming year as soon as it is safe to do so.
14) Government communications
Many people with kidney disease reported feeling disappointed with the government communications regarding support for kidney patients. Fiona highlighted the work that the kidney charities have been doing to raise awareness of the challenges that kidney patients have faced during the pandemic. Dr McAdoo also spoke about how researchers are feeding into government policy, often behind the scenes, and the vital role of patients who participate in these studies.
15) Flu jab
All kidney patients are encouraged to go and get their flu jabs this year as every year, to help protect themselves. The flu season may start earlier this year, so it would be wise to be early in the queue.
- We recommend all kidney patients have both doses of vaccine and that people taking immunosuppressant medication encourage their household members aged 16 and over to take up the offer of vaccination.
- Keep watching the kidney patient charity websites, which are updated regularly with information and guidance about Covid-19, vaccinations and research.
- Write to your MP if you would like them to raise any issues concerning support for kidney patients with Government.
- Ask your kidney doctor if you would like to learn more about participating in research studies
- Ask for a comprehensive risk assessment from your employer. Support is available if you do not feel your workplace is Covid-secure.
- We recommend all kidney patients take up the offer of the flu vaccine this year
- Kidney Care UK patient information on Covid-19, including the vaccine section
- Kidney Research UK information about all their work related to Covid-19
- National Kidney Federation information and support
- PKD Charity information on Covid-19 and polycystic kidney disease.
- Here is a great blog from Dr Ed Carr about vaccines.
- Another helpful resource is the Safe At Work campaign here which reminds employers of their duties in supporting CEV people and their right to a risk assessment.
- For financial, emotional and advocacy support visit our support section
- The Delta variant, the dominant variant in the UK, poses no greater risk to kidney patients but you should maintain risk reducing measures.
- Laboratory studies show with kidney disease who do not receive immunosuppression have been shown to have a good antibody response, whilst those on immunosuppressant drugs have weaker responses. However, this does not necessarily mean people are not protected from severe illness.
- It will take some time to understand what antibody levels mean in terms of protection from severe disease, but far fewer kidney patients are being admitted to hospital with severe Covid since the vaccine rollout.
- Doctors do not advise people take antibody tests outside of a research study because it is not clear what the results mean in terms of protection, so they are not a helpful guide.
- Clinically extremely vulnerable people are no longer advised to shield but should continue to take precautions. Those returning to work are entitled to a comprehensive risk assessment and your employer must ensure your workplace is Covid-secure.
- If people are feeling anxious about restrictions easing, they should go at their own pace and take small steps towards resuming activities.
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