Thank you to all who attended and contributed to the webinar, the ninth in our series. It covered developments in our knowledge about the Covid vaccines and treatments, potential preventative treatments, as well as a discussion about how to return to normal activities. We were joined by four kidney doctors, Dr Rebecca Suckling from Epsom and St Helier NHS Trust, Dr Andrew Frankel and Professor Liz Lightstone from Imperial College Healthcare NHS Trust and Professor Richard Haynes from the Oxford Kidney Unit. 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.
- The omicron variant appears to spread more easily but leads to less severe illness than previous Covid variants. Although many people with kidney disease have tested positive for Covid recently, only a smaller number of fully vaccinated patients were unwell enough to require hospital admission.
- Three doses of Covid vaccine are necessary for good protection for most people on dialysis and with CKD. For immunosuppressed people, more people respond with each additional dose so it is really important to have all four doses currently offered. Many people who appear to have a poor response as measured by production of antibodies have recovered well from Covid, so whilst caution is recommended there is some cause for optimism.
- People with kidney disease who develop symptoms of Covid should do a test promptly, as treatments are available that are very effective at reducing the severity of infection, but they should be started soon after symptom onset.
- There is a new scheme through which people at higher risk from Covid can get quick access to assessment for one of the new Covid treatments and we recommend people familiarise themselves with the process, in case they develop symptoms.
- There is lots of exciting research going on into treatments that can help prevent Covid, which may be particularly helpful for people who are immunosuppressed and therefore may not respond as well to the Covid vaccine.
- People with kidney disease are at much lower risk now than earlier in the pandemic and are encouraged to return to some form of normality while continuing with good practices such as frequent handwashing, not touching the face too much and adopting the space rule when it is in your interests and is practical.
- Individuals who are worried about their level of risk from Covid can discuss this with their hospital team and decide which measures they are happy to continue with while slowly getting back to normal activities.
Dr Andrew Frankel highlighted that although we haven’t reached the end of the Covid pandemic there are many reasons to be optimistic as we move from Covid being a really devastating respiratory virus for many people with kidney disease to a situation in which we have vaccines and a roll out of effective treatments. The virus itself is changing in the way viruses often do, to becoming more infectious but less dangerous. Compared to earlier stages of the pandemic, although many people with kidney disease are testing positive and caution is still required, fully vaccinated people are likely to have a much milder illness and are less likely to need to be admitted to hospital. Covid is moving to become one of the seasonal infections that we live with and there is a huge amount to be reassured about because we have better weapons to deal with it.
What is the risk to children from Covid?
Professor Haynes said that children have been found to be far less severely affected by Covid than adults, including children with kidney disease. Although the risk of children with kidney disease being very unwell with Covid is slightly higher than children with no health conditions, fortunately it is still a very low risk.
The Covid vaccine roll out has recently been extended to children aged 5-11 years old who have underlying health conditions or who live with people who are severely immunosuppressed. This is after careful assessment of the evidence. Your child’s doctor will be in touch with more information and to arrange an appointment.
Current and future vaccination schedule for people with kidney disease
Professor Haynes explained that for people with kidney disease who are not immunosuppressed, the usual course of Covid vaccines was for two initial doses (8 weeks apart) and then a third booster dose around 12 weeks after the second dose.
For people who are immunosuppressed, for example those with kidney transplants or who take immunosuppressant medications for another reason, the primary course of vaccines is three doses (8 weeks apart) and then a fourth booster dose around 12 weeks after the third dose. These vaccinations are not compulsory but are very much recommended to all kidney patients because of the protection they offer from severe illness with Covid.
It is most likely that, in future, the Covid vaccine will be offered as an annual vaccination, in the same way as the flu vaccine. It will be adapted to protect against the variant that is currently most widespread and probably offered alongside the flu vaccine at GPs and pharmacies.
How to access vaccines
Fiona noted that it is now possible to book the 3rd, 4th and all booster jabs online. People who are immunosuppressed will need to take a letter from their doctor which shows they are immunosuppressed to their vaccine appointment. This may be a any letter from your hospital doctor to your GP which summarises your condition and the medications you take.
How effective are the Covid vaccines for people with kidney disease?
Professor Lightstone summarised the latest research which tells us that, for people with kidney disease who are not immunosuppressed, three doses are necessary for a good level of protection from Covid. Two doses are less likely to provide a good enough level of protection, so it is very important that people in this group have all three of their vaccine doses.
People who are immunosuppressed should have four doses of the vaccine. They may respond less well, but research shows that for each additional dose there will be more people who respond. A proportion of the people who had no response to three doses will respond to the fourth dose. A small number of people will not respond to the fourth dose, but they will not be harmed by having repeated doses. Therefore, it is very important that people who are immunosuppressed have all four doses to secure their best chance of protection.
Should people on dialysis and with CKD 3, 4 and 5 have four doses of vaccine?
Professor Haynes told attendees that currently, people on dialysis and people who have CKD stage 3, 4 or 5 are not being offered a fourth dose, unless they are immunosuppressed for some other reason, because they tend to respond well to three doses. This group will be offered additional doses in the future, once we make the expected move to annual Covid vaccinations.
Do antibody levels wane over time?
The audience heard that antibody levels do wane over time, but this is not something to worry about. Following vaccination, another part of the immune system called memory cells are primed to produce more antibodies should the Covid virus enter the body. An antibody count that has reduced over time is not the same as not having produced antibodies in the first place, because the body is ready to produce more should they be needed to fight the virus.
What if I have produced no antibodies after four doses?
Professor Liz Lightstone addressed questions from people who had not produced any antibodies following vaccination. She said that it was sensible to be cautious when you go out and about, for example by wearing a mask and meeting people in the fresh air, but there was reason for optimism and many people who have no antibodies have caught Covid and recovered well.
Antibodies are only one part of the complex immune system and it is likely that although no antibodies are present, the body’s T cells and other immune responses are primed to fight the virus should a person become infected. New medicines are also available which are effective at treating immunosuppressed people with Covid, these are discussed later in the webinar.
Should all kidney patients have antibody tests?
It might be possible to access an antibody test via your NHS Trust and Professor Lightstone highlighted that it may be worth asking your kidney doctor about this, not least because it can help guide which treatments you should receive if you test positive for Covid. However, it is still not possible to say exactly what level of antibodies gives a good level of protection and you should discuss the result of any test with your kidney doctor. As we’ve heard previously, antibodies and the immune system are complex and buying tests privately is not recommended. Different tests measure different things and it may be hard for an individual to interpret what the result means in terms of protection and recommended behaviours.
Are there research studies I can get involved with?
The panel discussed ongoing studies into the Covid vaccines that people with kidney disease may like to get involved in. This includes the MELODY study, which people can participate in from home. Participants are sent a kit which tests their antibody levels. A negative result on this test does necessarily mean the person has no antibodies, as these home kits have a higher threshold for a positive result than tests used in hospitals. This means a higher level of antibodies is needed to get a positive result on the home kits. Also, the MELODY test kits do not measure other parts of the immune system, such as T-cells. The protection offered by these other facets of the immune system is reflected in the number of immunosuppressed people with no antibodies who have caught Omicron and recovered well.
The MELODY study team will look at outcomes for immunosuppressed people following vaccination. It will tell us how many people are producing antibodies and how much this affects their likelihood of catching Covid and having a severe illness. This will tell us more about the protection offered by the Covid vaccine and inform recommendations about what protection this group may need and the development of new treatments. The study website has more information and the Kidney Care UK Covid information has links to the MELODY study and other research opportunities.
What should I do if I think I have Covid?
Dr Andrew Frankel explained that if you think you have Covid it is important to get tested as soon as possible, as a positive test result will give you access to treatments some of which need to be taken within 5 days of symptoms onset. It is also vital that you tell your renal unit who will link up with other hospital departments that are leading on providing treatments for Covid.
Attendees were reminded it is important to contact your hospital unit to tell them you have Covid before your go in so that they can make arrangements for you to receive your care safely.
What do we know about new treatments for Covid?
Professor Richard Haynes reflected on the very positive developments in new treatments for Covid, which data suggests are very effective and have led to far fewer people becoming very sick and dying from Covid. There are two main types of treatment currently. They may be given in hospital via an infusion (injecting the treatment into the body) or a five-day course of tablets you can take at home.
The first type are monoclonal antibody treatments. These are produced by analysing the antibodies produced by people with a Covid infection. Scientists look at which of these antibodies are best at binding to the virus and stopping it from damaging the body. They then learn how to manufacture and deliver these antibodies to patients with a Covid infection.
There are also antiviral treatments. These treatments are focused on disrupting the mechanics inside the Covid virus to stop it replicating (making copies of itself). This means the virus cannot then travel around the body and cause damage.
Do these Covid treatments have side effects?
With over 10,000 of these treatments now given in the UK, side effects have been found to be mild. A small number of people will have an infusion reaction, which is like an allergic reaction, and some people report headaches, tummy upsets or dizziness after the tablets. But overall, these treatments are well tolerated.
How can I access these treatments?
The Covid treatments are available as appropriate to people who become very unwell with Covid. People who are at higher risk from Covid, including those with kidney transplants, people on dialysis and people with stage 4 or 5 CKD, should have been written to by the NHS and supplied with a PCR test to keep at home. This is to speed up access to an assessment for treatment, should they develop symptoms and then test positive for Covid.
Professor Haynes gave an overview of the system now in place for people at higher risk from Covid. The NHS letter sent to people in this group explains the importance of using the PCR test as soon as possible after the onset of Covid symptoms. The PCR test is sent off for analysis and if it is positive, you will be contacted within 24 hours and invited for an assessment at a CMDU (Covid Medicines Delivery Unit) and then given any appropriate treatments. Full details of the process in each UK nation are here: England Scotland Wales Northern Ireland.
If you do not hear within 24 hours of sending off your PCR test you should contact your GP or 111 who can make an urgent referral. Referral to a CDMU and the start of treatment should be within five days of both symptom onset and a positive PCR test.
We know that not everyone who falls within this high-risk group has received the letter and PCR test. If you believe you are in the group but haven’t had letter and you test positive for Covid, Professor Haynes recommended you call either 111, your GP or your kidney doctor and they will be able to refer you for assessment for treatment.
From 10th February in England, people in the highest risk group can use a lateral flow test (LFT) to access treatments if they do not have a PCR test or are awaiting a PCR test. You must submit the result of any lateral flow test either online or via 119 in order to be contacted by a CDMU about treatment.
LFT results can also be used in Wales. In Scotland, LFT results can be used in some circumstances but in Northern Ireland a confirmatory PCR is needed.
Fiona recommended everyone should make themselves familiar with the process they should follow if they develop symptoms of Covid.
Which are the treatments that I might be offered?
Professor Lightstone explained that the treatments originally used by CDMUs included sotromivab and monulpiravir. From Thursday 10th February monulpiravir will no longer be routinely used, but sotromivab, remdesivir, and a new drug call paxlovid, will be available. These drugs have been found to be very effective, including for people who are immunosuppressed. Clinical trials have shown they reduce the risk of being admitted to hospital with Covid by over 80%.
Many people with kidney disease will not be able to take paxlovid because it can’t be taken with a number of drugs taken by kidney patients like statins. Remdesivir is not recommended for people with a GFR below 30. It is therefore likely many people with kidney disease would be prescribed sotromivab. However, the doctors at the CDMU that are assessing you would have access to your medical notes and will recommend the treatment that is best and safe for you.
When this scheme began, patients may have been offered a choice of drug treatment. As more is learnt about the treatments and newer drugs used that are not suitable for some kidney patients, you are less likely to have a choice. But rest assured the drug offered will be the most appropriate for you.
Professor Lightstone explained that people who have tested positive for Covid but do not have symptoms would probably not be offered one of the treatments, as, on balance, they are likely to get better by themselves and so avoid the need for more drugs which can place quite a toll on the body. It is important that if you do have any Covid symptoms, which are very broad and include things like headaches, muscle aches and a sore throat, you report them. This advice stands however mild your symptoms are, so that you are prescribed any treatments you may need.
Attendees heard many people with kidney disease who have already had Covid will probably catch it again. It is likely that if you had a relatively mild infection first time around, it will be similar if reinfected. You may still need to be prescribed one of the Covid treatments if you do catch the virus again.
Your Trust should provide transport for you if it would otherwise be difficult for you to get to hospital to receive your Covid treatment.
If you are elsewhere in the UK when you test positive for Covid, you should still be assessed by the CDMU for treatment, although it might take a bit more organising in the background. You should take your PCR or LFT tests with you when you travel.
There is lots of interest and work going on to develop and test treatments that can prevent people from becoming ill with Covid. These will be particularly important for people who are immunosuppressed who may not have responded as well to the Covid vaccines. Many of the drugs in development may offer long-acting protection, which will be very helpful in enabling immunosuppressed people to get back to normal life.
Evusheld is an antibody therapy developed for the pre-exposure prophylaxis (prevention) of Covid. It has been approved for use in the USA and is currently being assessed by the UK’s MHRA (Medicines and Healthcare Products Regulatory Agency).
A trial called PROTECT-V is evaluating the benefits of treatments that may prevent Covid, including a nasal spray called Niclosamide. They will also be adding the monoclonal antibody sotrivomab and another drug, ciclesonide, to the clinical trial.
Although lots of work is going on, preventative treatments are not currently in routine use in the UK. It may be that widespread use of these treatments becomes unnecessary, because of omicron and potentially future variants causing less severe illness which people can recover from on their own. No treatment is without risk, so there would need to be a careful consideration of the benefits of reducing an already low risk from Covid against the potential harm of giving an additional medication to a person with kidney disease. This is a different risk benefit calculation to giving the medication to someone who already has Covid or giving preventative treatment when the risk of severe illness with Covid is very high.
Professor Lightstone shared that the Melody study team is in discussions about testing the use of Evusheld in people they have identified as having no antibody response to the vaccines. It is really important to explore all avenues for protecting this group and this research could provide some very valuable guidance about how best to do so.
Fiona highlighted a government statement in which they expressed their commitment to developing preventative treatments for people who are immunosuppressed and at higher risk from Covid.
Keeping safe while getting back to normal activities
Restrictions are easing further around the UK and Dr Frankel explained that the days of nationally determined rules to reduce the spread of Covid are likely to be over very soon, unless something unpredicted changes. The virus will still be present but for fully vaccinated people, even those who are immunosuppressed, the risk of becoming severely ill will be very much lower. If you do catch Covid you are most likely to be able to recover at home particularly if you access treatments available (described above).
Fiona highlighted that some people remained very fearful and felt they should continue to shield themselves. Dr Frankel advised that if you are very concerned that you remain at high risk from Covid you should talk to your hospital team – to your dialysis nurse or your consultant. Talk to them to understand what your actual risk is and how to adopt sensible measures without unduly restricting your life. It is likely that if you are fully vaccinated your risk is now much lower than it was and it will go down further as case numbers reduce, even if you are immunosuppressed. This is particularly because omicron is associated with less severe illness and we now have effective treatments.
Dr Frankel recommended you think about the measures that you are happy to continue using, that reduce the chances of catching Covid but do not impinge too much on your wellbeing or day to day life. So, you might want to carry on using a mask in public indoor spaces but are happy to meet up with people again, possibly while maintaining space. Or you may choose to get back to cuddling your grandchildren, but not travelling at peak times on public transport. By thinking through what is important to you, you can strike a balance between reducing your chance of getting Covid while living your life in the way that you choose.
Dr Frankel emphasised that we need to encourage people to come back to some form of normality but to pick up the good practices with which we’ve all become familiar. This includes frequent handwashing, being careful not to touch your face too much and adopting the space rule when it is in your interests and is practical. These will not only help protect you from Covid but other viruses too, as people who are immunosuppressed have always been advised to do. Dr Frankel also highlighted that as a society we are all more aware of the need to protect others from infections, which will lead to changes such as not coming into work with heavy colds or delaying a social event because of illness and this will be a good thing.
Attendees were concerned with how to judge their own individual risk from Covid. The panel reflected that this is a difficult question that can never be precisely determined, but factors like age and overall health status can be a helpful guide. There are tools on the internet that can guide you and you can also talk to your clinician about your risk and what you can do to reduce risk.
Importance of reliable information sources
Keeping abreast of new developments in our understanding of Covid, new treatments and also changes in the virus is also important as these factors will impact on people’s risk. But Dr Frankel reminded us that there is a huge amount of information about Covid and some of it is very alarmist but not necessarily reliable. So, it is vital to get information about your health from accredited and reliable sources, such as Kidney Care UK.
Support to keep safe at work
Fiona reminded attendees that the guidance in England is that people who are immunosuppressed should continue to work from home if they can. Kidney Care UK have produced a letter, with the support of other charities, which summarises information and sources of advice about keeping safe at work which people can share with their employers. It is available to download from the Kidney Care UK website. This confirms that employers have a duty to keep everyone safe in the workplace and should give particular consideration to those at higher risk from Covid, such as those who are immunosuppressed. Employees at higher risk should be able to undergo a risk assessment which establishes how employers will meet this duty. Dr Frankel highlighted that your hospital team can also offer support with conversations with employers.
Fiona thanked the panellists 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
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