Summary of the discussion
Thank you to all who attended and contributed to the webinar, the third in our series. It covered developments in our knowledge about the risks from Covid and how we treat people with Covid. This has helped to reduce the numbers of people who die from Covid. We discussed the vaccine, how it was developed and how it can help kidney patients. Questions about returning to work safely were also answered, including the help you should get from your kidney doctors. Importantly, it was emphasised that for the present time kidney patients should continue to adapt their behaviour to minimise their risk from Covid. We were joined by 3 kidney doctors, Dr Rebecca Suckling from Epsom and St Helier hospital, Dr Andrew Frankel from Imperial College Healthcare Trust and Professor Richard Haynes from the Oxford Kidney Unit and 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.
- An update on what we know about how Covid-19 affects kidney patients
Dr Frankel gave an update on the significant amount that has been learnt so far about how Covid-19 affects kidney patients. Three key areas for kidney patients where knowledge has increased are; understanding level of risk from Covid; how we can best look after people on haemodialysis in hospital units so that they are less likely to catch Covid in dialysis units; and how we treat people who have Covid.
1.1 What is the risk to kidney patients from Covid-19?
It was explained that Covid is a serious disorder but we know that most people, including kidney patients, have only mild symptoms and recover well indeed a significant number have no symptoms at all. However, underlying conditions such as kidney disease increase the risk of severe symptoms. For this reason, it is very important that people continue to protect themselves and minimise their chance of contracting Covid.
It is not a binary situation whereby people are at high risk of becoming very ill from Covid or not. There are a number of individual factors that increase one’s risk of becoming severely ill. Age is the most important one, the older you are the higher your risk of serious outcomes from Covid. Other factors such as obesity, ethnicity, diabetes and being on immunosuppression also increase your risk. Some of you will recognise yourselves as being at very high risk, but if you are young and have only one or two risk factors, your risk is likely to be lower.
If you are younger, for example aged 30, and have a transplant and are on standard immunosuppression but no other risk factors then your risk is not nearly as high compared to an older person who is obese and has diabetes. You should continue to be careful and adapt your behaviour in order to reduce your risk of catching Covid, but if you do catch it is more likely to be a milder case.
1.2 Would immunosuppressants impact on the ‘cytokine storm’ that can occur in Covid?
Dr Frankel explained that the cytokine storm, which is when the body’s immune system becomes overactive in response to an infection and releases an excess amount of proteins called cytokines which may cause damage, was possibly less of a significant factor in Covid-19 than first thought. Therefore, It is not believed that there is a significant interaction between existing medication and the cytokine storm.
1.3 Are kidney patients more at risk of catching Covid?
The risk factors referred to in 1.1 do not increase your chance of catching Covid. This is determined by your behaviour and your environment (whether there is a high number of cases in your area). We continue to encourage people to adapt their behaviour to minimise their risk of catching Covid.
- What have we learnt about treating Covid-19?
Professor Haynes explained that we have learnt a lot about how to treat Covid since March, through research into treatments and experience of treating people with the virus. This has resulted in fewer people who are admitted to hospital with Covid having very bad outcomes and dying. One of the first treatments was Remdesivir, which reduced length of hospital stay but did not seem to affect chance of death. The Recovery trial was the first trial to find that a treatment called Dexamethasone can substantially reduce risk of death. It is now standard treatment around the world and has contributed to the more positive outcomes we are now seeing. There are also ongoing studies of a third drug called tocilizumab which seems to help people who are seriously ill with Covid. These are all medicines we already use for other illnesses.
2.1 Are these treatments used for kidney patients?
Kidney patients were included in the trials of these treatments and all the evidence suggests that they should be treated in the same way as other people with Covid, as long as there is not a specific reason that treatment should be different.
The majority of people admitted to hospital recover and this proportion is increasing. The Kidney Care UK website has a blog describing one kidney patient’s experience of contracting and recovering from Covid.
2.2 Are kidney patients affected by Long Covid?
It is likely that people with kidney disease have developed Long Covid but we do not know at this point whether it has affected their kidneys. The descriptions of long Covid are based on people’s symptoms like tiredness and difficulty thinking, rather than damage to organs. Studies are ongoing which may tell us about how people’s organs are affected.
2.3 Should I monitor my oxygen levels and temperature at home?
In terms of self-management of Covid, increasingly hospitals are setting up ‘virtual Covid wards’, in which people with Covid are provided with equipment to measure things like their oxygen levels at home. The hospital doctors monitor the readings that are sent in and take appropriate action.
People without a diagnosis of Covid, but who monitor their temperature and oxygen levels at home, should book a test for Covid if they have any of the key symptoms – a raised temperature, continuous cough or change/loss of taste and/or smell. You should contact your kidney unit if you think you have Covid, or have had a positive test.
In terms of when you should contact your doctor about your oxygen levels, it is not really possible to give a definite figure, but it would be important to look out for a drop from your usual levels particularly if that drop is accompanied by feeling unwell. If this is the case, you should seek medical attention.
2.4 Should I be taking vitamin D supplements to help prevent Covid-19?
There has been quite a bit of publicity about vitamin D and people who are clinically extremely vulnerable are now being offered free vitamin D supplements. It is good for you and can help support your immune system and possibly help resist infection with Covid. So it is important to have sufficient vitamin D.
It has always been considered good practice for people with advanced kidney disease have to their vitamin D levels brought up to the correct level because they are often low in this vitamin. So it is likely you are already being prescribed supplements, for example Adcal, and you should check with your doctor before taking any additional supplements.
Some units are more hesitant about prescribing vitamin D to people in the first year after a kidney transplant, so if this is the case do check with your kidney team and you may be advised not to take vitamin D supplements.
It is important to note that there is active vitamin D, which is often prescribed by kidney units in medicines like Alfacalcidol and Calcitriol. It is subtly different from natural vitamin D. You can be low in natural vitamin D even if you are taking active vitamin D. So do check with your kidney doctor about any natural vitamin D supplement you may already be taking and what you should do to make sure your levels are correct.
- Vaccines for Covid-19
Vaccines are one of the most incredible things about modern medicine; they have eradicated severe diseases and have had a huge public health benefit. And it is remarkable that we have progressed from a disease unheard of in January to possibly vaccinating people before the end of this year.
3.1 Should I be worried about how quickly the vaccines have been developed?
No, you should not be worried. The speed of development might make people concerned, so it is important to say that corners have not been cut. Before they can be used, the vaccines must pass all the same safety tests and provide the same level of results to the regulator (the MHRA) as for any other vaccine.
The speed of development has been possible because it was recognised that things had to be done differently in response to this worldwide emergency. The usual process for vaccine development is relatively slow. Developers complete a stage of work at a time and submit each stage to the regulator, who takes considerable time to issue approvals before planning for the next stage can begin. In response to the Covid pandemic, regulators and researchers have worked in parallel and avoided delays. This has meant that the vaccine development has progressed as quickly as possible, but with all of the same standards of safety checks as with any other vaccine.
3.2 How effective are the vaccines?
3.2.1 What have the vaccine clinical trials found?
Tens of thousands of people around the world have taken part in clinical trials of the vaccine, just as with any other vaccine. Results have been published for three vaccines, with data showing 90%, 95% and 70% effectiveness. Ninety-five per cent efficacy means that in the clinical trials, there were 95% fewer cases of Covid in people who had the vaccine compared to the people who had the placebo (dummy treatment). Although slightly more people taking the Oxford/Astrazeneca vaccine did contract Covid, it is important to note none of these people became severely ill and none of them had to go into hospital. As well as the obvious benefit to individuals, this also reduces the demands on health service resources. The Oxford vaccine is also simpler to store and transport around the country.
3.2.2 Does age affect how well the vaccines work?
Fortunately, age does not seem to affect how well the vaccine works. Older people’s immune systems mount just as good a response.
3.2.3 Was there any difference in outcomes for people from Black, Asian and Minority Ethnic Groups?
The studies have not identified any different impact in Black, Asian and Minority Ethnic groups. This is because there have not been enough people in the studies who have become very unwell to be able to study any particular subgroups.
3.2.4 Could the virus mutate, meaning that the vaccine no longer works?
Yes, but every year we change the flu jab and it may be that this is the same with Covid, so we might need slightly different jab.
3.2.5 How well do the vaccines work for kidney patients and those taking immunosuppressants?
Kidney patients were not included in the vaccine trials because trials generally include the wider population rather than people with specific health conditions.
Because the vaccine is new, we will not have all the answers to how different people respond for some time. It may be that people with kidney disease and people on immunosuppressants do not respond quite as well. However, there is every reason to expect that the vaccines will work well enough make it worthwhile having the vaccine. The partial protection it will give you will be better than nothing.
This is similar to the current flu vaccines, which do not work as well in kidney patients but still offer important protection. The increased risk that Covid poses to people with long-term conditions like kidney disease mean it is particularly important that they have the vaccine.
3.2.6 Tell us more about the trial where people without functioning immune systems are given antibodies instead of a vaccine? Could this be the best thing for people with kidney transplants?
People asked about the trial that is looking at an antibody treatment for people with severely impaired immune systems who would not respond to the vaccine. Vaccines stimulate the body to produce antibodies to fight an infection. These antibodies can be manufactured and given to people directly, if they would not respond to the vaccine. It is likely that this would not provide the same length of protection as a vaccine, but the trial is looking at whether this is a useful alternative treatment for some people. Most people with kidney disease would probably respond well enough to a vaccine so as not to need the antibody treatment.
3.2.7 Could ‘herd immunity’ help protect kidney patients?
Yes. People with kidney disease may not have such a strong response to the vaccine as the general population. However, when large numbers of people in the community have the vaccine and become immune then the virus has nowhere to go. It cannot spread and this means it will not be present in our communities as it is at the moment. This is known as herd immunity and makes it safer for everyone.
So the key thing with these vaccines, as with others, is not an individual’s response to them, but vaccination levels across the population. When large numbers of the population are vaccinated, it protects even those who may not have a strong response to the vaccine.
3.3 The safety of Covid vaccines
The vaccines will only be approved for use once they have passed all the stringent safety tests in place for new medicines. As is always the case with new vaccines, we will learn more about the long term safety of the vaccines over time and this will be assessed by ongoing studies.
3.3.1 Are the vaccines safe for kidney patients?
- Are the Covid vaccines live?
In terms of safety for kidney patients, the risk to transplant patients from live vaccines is not a concern as none of these Covid vaccines are live.
- Could the vaccines cause rejection of my transplant?
There is a theoretical concern with all vaccines that because they stimulate the immune system, they might damage transplanted kidneys or cause rejection. This has never happened with other vaccines, which all work by stimulating the immune system. Professor Haynes said the benefits of reducing the known risk of Covid for kidney patients should outweigh concerns about a theoretical risk, that has to date not been shown with any other vaccine.
- Safety and efficacy of the vaccine for people with specific kidney diseases
A number of people asked about the efficacy and safety of the vaccines for people with specific kidney diseases, such as IgA nephropathy. There is no reason to think there are particular risks for people with these conditions, but you are advised to speak to your doctor if you have any concerns.
3.3.2 Will the vaccines interact with any other medicines?
There is no evidence that the vaccines interact with other medicines, so it should not matter what other drugs you are taking. Your doctors will advise you if there is anything that you should be concerned about.
3.4 Which vaccine will be best for kidney patients?
There is no evidence that one vaccine is better than another for kidney patients or people on immunosuppressants. Dr Frankel advised that it would be best to take the first vaccine that is available in your area, to avoid any delays in protecting yourself. Waiting for a specific vaccine would extend the time you are vulnerable to Covid.
3.5 Will I be followed up after I have had the vaccine?
As with currently available vaccines, for example the seasonal flu vaccine, there will not be individual follow up. You should alert your doctor if you have any worries about changes in your health, as at any time. As with all vaccines, there will be long term studies of the safety and effectiveness of the Covid vaccines, which will continue for a number of years.
3.6 Who will contact us when it is our turn to have the vaccine?
You will be contacted by your kidney team or your GP when it is your turn to have the vaccine.
3.7 Will families of kidney patients be able to have the vaccine at the same time?
The provisional guidance suggests that family members of clinically extremely vulnerable people will be able to get the vaccine, because of the additional protection it will offer that person. How this works is yet to be confirmed.
3.8 Will we need to take a booster for the Covid vaccine?
We’ll find out whether and when we need a booster to the vaccine as time goes on and we learn more about how long their protection lasts.
3.9 What priority will be given to kidney patients when it comes to getting the vaccines?
The situation with regard to prioritisation of access to vaccines is changing and recently the list was changed so that clinically extremely vulnerable people would receive the vaccine earlier. Kidney Care UK is monitoring the situation and working to ensure kidney patients can have access to the vaccine as soon as possible. We will update our online guidance as the situation changes.
- What safety measures should I be taking once the vaccination programme is rolled out? What will the risk from Covid be?
Kidney patients should continue to be vigilant and protect themselves once vaccines start to be rolled out to different groups in the community. Professor Haynes recommends a gradual return to usual activities, rather than a drastic change in behaviour. Vaccinated people may still be infectious and until kidney patients have had their vaccine, they should continue to take all the same precautions as now.
Even after you have had your vaccine, it would be sensible to wait until high numbers of people in the general population have had the vaccine and infection rates in your community have come down before getting out and about too much.
It is most likely that eventually Covid will be another disease that is present in our communities, just like flu. The vaccines will not wipe it out. But it will not be something to be as scared of because it will not be circulating in communities as it is now, and your chances of picking it up will be very low. It will be another risk to manage by following the same infection control measures as with other diseases, such as washing hands regularly.
Over the next year, things will gradually return what we consider a more normal way of life and people can be more confident about going back to the office and their other usual activities.
- Employment - going out to work safely
The Government’s shielding guidance has been a very blunt instrument, which could not take account of people’s individual levels of risk. However, it should always be an individual’s choice as to whether to go into work. When coming to a decision it is important to think about; your own personal risk level; the job that you do; how you get there (busy public transport poses a risk). These are the things that determine whether it is safe for you to go back to work. You will also need to follow the rules for the whole population, for example in England everyone should currently be working from home if they can do so.
If you are clinically extremely vulnerable you should continue to work from home if you can, but if you feel your risk is lower and your workplace can be made safe, then you may choose to go into work.
If your workplace is not safe and it is difficult to engage your employer in discussions about how to make it safe there are a number of places to go for help. Your hospital kidney team should support you and this should be more than a generic letter. If you are facing a difficult and risky situation at work, your unit should give your proper support.
You can also contact Kidney Care UK for support. They have advice online, counselling and a team of Advocacy Officers to help. They are also campaigning for people to be able to work from home if they need to, or have access to the furlough scheme until end of next March if their workplace cannot be made safe.
- Keeping safe at Christmas
Christmas is going to be different this year. So many kidney patients have done such a great job of protecting themselves over the last nine months and it may not be worth putting this at risk for Christmas. The Government have said what it is possible to do, without breaking the law. But this is not the same as what people should do and it is probably best to plan for a socially distanced Christmas and save all the celebrations for later in the year when it is safer.
- How can I make sure the information I am reading is correct and reliable?
There is a huge amount of misinformation on the internet and it is really important that people can access accurate and reliable information to guide them. Kidney patients should go to well-known and reliable sources such as Kidney Care UK, the Renal Association and the British Renal Association for information they can trust.
Fiona Loud reminded everyone to keep sending their questions into Kidney Care UK via [email protected] and we will source the answer and publish in our online Covid-19 guidance.
Thank you again for joining our webinar.
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Professor Donal O’Donoghue OBE 1956 – 2021
Kidney Care UK Chair of Trustees Professor Donal O'Donoghue passed away due to Covid-19 on Sunday 3 January.