COVID-19 - Frequently asked questions (FAQs)

To help the primary and secondary immunodeficiency communities we have put together some FAQs to help address some of the queries you may have regarding COVID-19 and its implications for the community.

The FAQs cover topics such as:

  • What to do in the case of non-COVID-19 emergencies
  • Attending hospital appointments, immunoglobulin safety and availability, and immunoglobulin infusions
  • Testing for COVID-19
  • Treatments for COVID-19
  • Mental health well-being
  • Benefits you could claim for.  

Q. I am hearing now about SARS-CoV-2 virus. What is this and is it the same as COVID-19?

A. Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) is the virus strain that causes coronavirus disease (COVID-19). It is the same thing, but researchers and scientists have given it a more precise name.

Q. Are people with immunodeficiency more likely to catch COVID-19?

A. No the risks are the same as for the general population.

Q. I am in the highly vulnerable group. If I get COVID-19, am I more likely to have trouble in recovering?

A. If you are highly vulnerable then you are thought to be at risk of more severe disease, so avoidance of getting COVID-19 is the key. This is why shielding is so important.

Q. Is COVID-19 contagious before symptoms begin?

A. Possibly but the data about how contagious COVID-19 is remains scarce.

Q. Can people get COVID-19 twice?

A. This is not fully understood at the present time. People with normal immunity are unlikely to get the same strain twice but it is not known how much the virus can or will change or how truly different some described sub strains are in terms of immunity when it develops.  People with immunodeficiency could be at risk more than once.

Q. Why are some people asymptomatic and what is different about them?

A. There is no clear answer to this at the moment, but we know that being asymptomatic is mainly age related (children more likely to be asymptomatic).

Q. Will warmer weather help kill off COVID-19?

A. There are speculations that warmer temperatures will help limit the spread of the virus, as is the case during an influenza outbreak. However we don’t know if this is the case with COVID-19. Countries such as Brazil, Peru and Indonesia are all warmer climates and have experienced significant spread of the virus and within the UK cases continued to rise in the South West and North despite unseasonably high temperatures.

Q. Can people affected by immunodeficiency take part in the COVID-19 clinical trials?

A. Yes but you should seek medical advice before you do so.

Q. It seems like children might be going back to school soon. Is there guidance for families who have vulnerable children?

A. Yes plans are being made for schools reopening in England, with the other home nations taking different decisions. There is no guidance at all yet but if your child is vulnerable you should continue to follow the shielding guidance until told this has changed. 

Q. I have heard PID patients have had bad outcomes from COVID, why is that and what are the results?

A. The immunology medical organisation, UKPIN, undertook a survey and asked centres to send information on patients they were aware of having COVID-19 infection. The information was voluntarily collected and then emailed in to UKPIN. Outcome data on approximately 50 patients with primary immunodeficiency (PID) and 30 with secondary immunodeficiency (SID) from different hospitals were analysed. The majority of patients in the survey came to light because they were admitted into a hospital for severe COVID symptoms. The outcomes of those with COVID severe enough to be admitted to hospital were about the same for PID patients as the general population. With respect to the CVID data: very few patients with CVID have had COVID (<1%) and the risk of COVID outcomes in CVID patients admitted into hospital because of COVID appear to be similar to patients without CVID.

It is important to note that the number of cases studied is very, very low - probably 99% of PID patients have either not had COVID, or, they had an infection that hasn’t been bad enough to need testing and treatment in hospital. There is no data available on patients who have had mild infection at home. There has not been community based testing. The data belongs to UKPIN and not PID UK.

Q. When will we know more about how the COVID-19 pandemic has affected the community?

A. There are ongoing research surveys taking place nationally and internationally. There is the possibility of reasonable data within a few months. We encourage everyone to get involved as the more information that can be obtained the better. A summary of the studies you can get involved in can be found at

Q. Has the National Institute for Health and Care Excellence (NICE) issued any guidance for the PID and secondary immunodeficiency community?

A. A NICE guideline for children and young people who are immunocompromised was published on the 1st May 2020. The guideline is for health and care practitioners, health and care staff involved in planning and delivering services and commissioners. You can access the guidance at

Q. What information is it useful to have to hand in case I get ill from COVID-19?

A. We would suggest having written details of any underlying health conditions you have; a list of your medication, doses and frequency and how you take your medicines; contact details of your immunology health team; record if you have low blood pressure or body temperature and state what they are or if you have a phobia of needles or sickness: and also list the names and numbers of family members you would like us to contact in an emergency.

If you want to record more formally your information and wishes, then you could consider making an ‘advanced healthcare plan’. With anxiety levels at an all-time high this is a sensitive topic and many people might not want to talk about this or want to do one – this is entirely up to the individual.  Advance Care Planning, is a process through which individuals can plan ahead and make choices about their future. It is for anyone who wishes to plan ahead, whether he or she has a serious illness or not.

Here is a perspective from one of our members. She says ‘I think these, advanced plans, might be of use to the community, it would save a great deal of stress in an emergency – I’ve already sorted one for my husband to use (for me) in an emergency as he wouldn’t have a clue about any of this ‘medical stuff, his words. I think that you need to give the doctors/nurses a ‘flavour’ of your personality, so they see you and not COVID-19.’ Here is an example of a care-plan.

If you live in England or Wales, you can record your wishes for treatment and care using this form

If you live in Scotland this type of planning is called an Anticipatory Care Plan (ACP)

We were unable to find an equivalent document for Northern Ireland, but you could use the templates above.

Q. The worst COVID-19 cases seem to be when the immune system goes into override.  Would immunodeficient patients produce the same response? 

A. Immune deficiency is a misnomer much of the time.  Most of the inborn errors of immunity including CVID are disorders of immune regulation and many are associated with hyper inflammation outside of COVID.  Some patients with PID may experience severe COVID because they cannot clear the virus, whilst others may have inflammatory complications.  Hyperinflammation is seen in people with previously “normal” immune systems so it would not be surprising to see this also in a subset of patients with PID as a consequence of COVID-19 infection.

Q. What is a cytokine storm and how is it involved in COVID-19?

A. Cytokines are a group of chemicals secreted by cells, which organise the immune, and inflammatory response by which we defend ourselves against infection. They include interleukins, interferons, and growth factors. A cytokine storm is when the immune system goes into overdrive and large amounts of cytokines are produced which drive immune cells to attack the bodies’ own tissues.  In serious cases of COVID it can cause leakage of blood vessels and the lungs may fill up with fluid.

You can read more at:

Q. Is it possible to stop the cytokine storm?

A. We now know that Dexamethasone, a steroid, is effective and reduces the inflammation and saves lives.  Other treatments are being trialled also targeting cytokine storm, but we do not yet know if they are effective.

Q. What do we know about whether people who are seriously ill with COVID are primarily suffering from the virus or whether it’s bacterial infections that are exploiting the opening that the virus provides? Is there a link to the research?

A. Many of the patients do have evidence of secondary bacterial infection, this is routinely tested for in admissions and most people are pre-emptively started on antibiotics if admitted into hospital. COVID itself does however cause direct inflammation in lungs and through cytokine storm can activate the immune system causing multi-organ damage. It was recognized quite early on that the infection also increases blood clotting and some of the damage to organs (including the lungs and kidneys) can be caused by blood clots. The research changes so rapidly Immunodeficiency UK would not advocate posting that information here.

Q. What do we know about the after effects of having had COVID-19?

A. There are long-term follow-up studies, but it is still too early to say with any certainty what the true long-term effects are.

Q. Is the COVID-19 virus mutating?

A. All viruses mutate.  COVID-19 has been around for a relatively short time, so the amount of mutation or change in viral genetic sequence is currently quite limited.  The number of cases in China was much lower than that in Europe and other parts of the world, so more mutation has been seen in the virus in Europe. There is no compelling evidence as yet that the virus has mutated to be significantly more or less harmful. There is some evidence that it may have undergone a mutation in Europe that could enhance transmission, but that is very preliminary data and as yet unconfirmed.

Q. How does the COVID-19 virus disguise itself to enter human cells undetected?

A. COVID-19 has a large number of spikes sticking out on its surface, which it uses to attach to and enter cells in the human body. These spikes are coated in sugars, known as glycans, which disguise their viral proteins and help them invade the body’s immune system. The entry receptor for COVID-19 is known as Angiotensin-Coverting- Enzyme (ACE-2). 

Q. When people develop antibodies to COVID-19 are there certain parts of the virus that are ‘hot spots’ for antibodies to bind to?

A. SARS-COV2 has spike (S), membrane (M), nucleocapsid (N) and envelope (E) proteins.  Of these the majority of antibodies following natural infection appear to be targeted against the S or N antigens and it is responses to S or N that are measured in the antibody tests that the government is rolling out.

Q. Is there a link between COVID susceptibility and someone’s blood type?

A. There are reports suggesting certain blood groups may increase susceptibility, but they are preliminary and it is not clear that bias has been removed to exclude the overall frequency of those blood groups in the populations at risk.

Q. Is it possible to predict the trajectory of the virus in the UK?

A. This is difficult to do because a lack of testing results in a lack of understanding of its spread and we don’t know what proportion of the population is asymptomatic and could be ‘spreaders’.  As yet we don’t know if, and for how long, immunity lasts in people who have recovered from COVID. All these gaps in knowledge underline how important it is for people to adhere to the government’s guidelines on social distancing and COVID-19 health measures.

Q. How do I access the Scientific Advisory Group for Emergencies (SAGE) reports?

A. These can be found at


Q. In the event of a non-COVID medical emergency what should I do?

A. The risk of developing other serious or life-threatening conditions remains unchanged during the COVID-19 pandemic and you should be fully confident that you can, and should, seek medical assistance if you are worried about yourself, your child or other relative. Such circumstances may include having the symptoms of a heart attack, a stroke, signs of sepsis and meningitis. These are situations when the sooner medical attention is given the better the outcome will be. So, the key message is do not delay in seeking help because you are concerned about putting pressure on NHS services or frightened because of COVID-19. You should ring 999 emergency services as per normal.

Q. I’m confused about what I should do if I have other health problems that are not COVID-19 related. What do you advise?

A. If you need a GP appointment about something other than coronavirus then contact your practice, either online, by an app or by phone. You will be assessed and as far as possible you will receive advice or care online or over the phone. If a face-to-face appointment is necessary, you will be advised on what to do.

Everyone is being told NOT go to your GP unless you have been advised to. This will ensure the surgery can continue to provide essential care safely.

Q. I’m in the highly vulnerable group and having to shield. What should I do if I run out of the medicines I need?

A. Contact your GP either online, by an app or by phone telling them your situation. To get the medicines to you ask friends or family to help. In some areas volunteers are helping deliver medicines. You can also ask your pharmacy and ask them to deliver. People who deliver things to you must not come into your home and you must not leave your home to meet them.

Q. I am taking an immunosuppressant medicine. Should I stop taking or reduce my dosage because I’ve heard immunosuppressants might make me more vulnerable to COVID-19?

A. You should continue your immunosuppressive medication or you risk the disorder it is controlling re-activating.  You should check the advice re: Shielding – if your immunosuppressive therapy is in the list you should be minimising contact to prevent infection.  If you have read our resources and still aren’t sure, discuss with your health team.

Q. Should I have a back up supply of antibiotics for my daughter who has been taken off Azithromycin for the summer months?

A. This is very specific to the underlying condition. Usually someone well enough to be on no-treatment (assuming not on SCIG or IVIG) will need assessment by a doctor for any new infection, but this does vary centre to centre so check with your clinical team.

Q. I have just heard something about multisystem inflammatory syndrome. What are the symptoms and are children with a primary immunodeficiency more vulnerable?

A. Children with are not more likely to develop the COVID inflammatory syndrome as far as we currently know.  Before COVID the inflammatory syndrome presentation would be called Kawasaki’s or atypical Kawasaki’s. This is a vasculitis (blood vessel inflammation) of childhood. The features are prolonged fever (> 5 days), rash affecting eyes and skin, involvement of the hands and knees (swelling) and in a small percentage heart involvement with expansion of the blood vessels supplying the heart. Diagnosis during COVID is difficult because Coronavirus also causes fever as one of its typical features and it often lasts 5 days or more. The cause of Kawasaki’s is not known, but often it is thought to be triggered by infection. It seems likely that the currently described inflammatory syndrome is a form of Kawasaki’s in individuals who would always be susceptible to develop Kawasaki’s and is triggered by COVID.   

Q. What is the difference between a face covering and a facemask?

A. The term face covering is now being used to describe non-medical facemasks. The term usually refers to face coverings that are home made.

Q. What are the rules now on the use of facemasks?

A. The rules differ between the home nations. In England face coverings are now compulsory on public transport, for hospital staff, outpatients to hospitals and visitors, and for visits to GPs. In Wales and Northern Ireland people are being asked to wear non-medical face coverings where social distancing is not possible - including public transport, but their use is not mandatory. In Scotland, it is compulsory  use face coverings on public transport.

Useful links:
Northern Ireland:

Please be aware that masks must be worn correctly, changed frequently and got rid of safely if they are to work properly so do read the guidance embedded in the link above. 

Q. If I get COVID-19 what should I do if I develop breathing difficulties?

A. Anyone who is concerned that they are short of breath should contact 111 or 999 for advice.

Q. Should I be taking any vitamin supplements during the COVID-19 pandemic?

A. Keeping a healthy well-balanced diet with plenty of fruit and vegetables is good practice and should provide all the vitamins you need. There is no evidence that taking vitamins will protect people from coronavirus.

Q. I have a PID but I am not in the highest risk group and have been asked to return to work in a busy infant classroom.  I’m concerned about this. What should I do? 

A. We are unable to give individual risk assessments but advise that you contact your GP about this matter.

Q. I am shielding. Should I take Vitamin D?

A. You can take a vitamin D supplement, but the dosage should be within Recommended Dietary Allowance (RDA) guidelines. 

Q.  Should I take Ibuprofen if I get a COVID-19 infection?

A. The current advice is that patients who have been prescribed non-steroidal anti-inflammatory drugs (NSAIDs) as a treatment for a long-term condition, such as arthritis, should keep taking these medicines as normal. Adult patients who take low-dose 75 mg aspirin regularly for prevention of heart attacks or for vascular disease should continue to do so. The full guidance is at:

Q.  How did PID UK develop its statements and guidance on COVID-19 for the community?

A. All the information PID UK provided was peer-reviewed by our Medical Advisory Panel and other immunologists and was consistent with the medical consensus opinion from UK PIN, the professional organisation representing clinical immunologists and immunology nurses. The information we issued evolved over time taking into account the changing landscape of the COVID-19 situation in the UK and the Government’s guidance. 

Q.  Why did I receive conflicting advice from the NHS and PID UK concerning my risk level? 

A. Our guidance advice was produced in concert with that developed by consensus from UK PIN and remains current but we understand your confusion. This has been caused by the way the current system is working with patient coding and systems not accurate enough to differentiate different types of PID. So people are getting mixed messages from these latest GP generated letters and immunodeficiency of any type is being added to the shielding list.

If in doubt you should contact your immunology centre to double check, whether shielding and not strict social distancing is required.

Q. How do you best look after someone with COVID-19 symptoms?

A. This is a really good video guide to what measures you should take if someone in your household gets the virus:

Lung health

Q. Are there any breathing exercises I should be doing to keep up my lung health?

A. Keeping up with physical exercise is a good way to maintain good lung health. There are also specific breathing exercises that you could do - have a look at our website page on lung health at

Q. Would being able to measure my blood oxygen levels at home using a pulse oximeter be a help to check how well my lungs are working through the COVID pandemic?

A. Anyone who is concerned that they are short of breath should contact 111 or 999 for advice. A pulse oximeter if available may give the person giving advice additional information, but not all pulse oximeters that you can buy are properly calibrated and could give false re-assurance to someone with dangerously low oxygen levels.  In general, we only advise people on home oxygen supplied with pulse oximeters by the hospital to use them.


Q. The Government has announced news on the easing of lockdown. How will this affect me as I have been advised to shield?

A. If you are the highly vulnerable group you should remain shielding for the full period as the easing of lockdown does not apply to your situation. This is to keep you safe and protected from COVID-19.  Please see also the queries below.

Q. Why has shielding been extended in some of the home nations and not others e.g. England?

A. The decisions on COVID measures are based on the science, including case numbers and politics.  A final decision on shielding has not been made yet and will depend on what happens to cases in the next couple of weeks as restrictions for the general population are eased. Some of the shielding restrictions have been eased – allowing highly vulnerable individuals some daily exercise, but with strict social distancing.

Q. Is there an evidence base that the government is using for extremely vulnerable people when they consider easing of shielding for the highly vulnerable?

A. The advice is given by SAGE the Scientific Advisory Group for Emergencies.  The evidence base for previous decisions is shared online and some for COVID is now available, but PID UK is not party to anything other than that in the public domain.

Q. Do you know when the Government will issue more advice for individuals in the 'Moderate' risk category?

A. This is usually announced first at one of the government briefings.  You normally can tell this is coming because the press start to report on likely changes a few days in advance.

Q. Are there any plans to extend the shielding period?

A. As part of this document ‘Our Plan to Rebuild: The UK Government's Covid 19 recovery strategy’
 there is a paragraph below that implies shielding will be extended.

‘Protecting the most clinically vulnerable people
Some people have received a letter from the NHS, their clinician or their GP telling them that as a result of having certain medical conditions, they are considered to be clinically extremely vulnerable. Throughout this period, the Government will need to continue an extensive programme of shielding for this group while the virus continues to circulate. The Government will also have to adjust its protections for other vulnerable locations like prisons and care homes, based on an understanding of the risk.

Those in the clinically extremely vulnerable cohort will continue to be advised to shield themselves for some time yet, and the Government recognises the difficulties this brings for those affected. Over the coming weeks, the Government will continue to introduce more support and assistance for these individuals so that they have the help they need as they stay shielded. And the Government will bring in further measures to support those providing the shield - for example, continuing to prioritise care workers for testing and protective equipment.’

Q. Can I attend a family funeral if I am shielding?

A. The purpose of shielding is to absolutely minimize contact with people with the virus.  Although funerals are now limited to 5 or 10 people and they are trying to clean the facilities between funeral services and are setting it out so you can socially distance during the funeral, nonetheless the decision to take the risk is a highly personal one.  Many funeral facilities are now offering webcasts of the service, so you can still participate in the right of passage.  If you are religious having a faith discussion with a religious leader may also help you.  We found the link at this website address helpful

Q. I have been told to shield against coronavirus, as far as I am aware, I only have an isolated IgA deficiency. I have queried with the GP and he has advised I do need to shield.  I am not under an immunologist as I have never needed to be, whom would you suggest I query this with as your risk assessment table indicates I am in level 3?

A. If isolated IgA deficiency is your only health issue then you would not be considered to need shielding on that basis, but your GP may be taking your other medical history into account.  Your GP can call a local immunologist or use the NHS e-Referral Service Advice and Guidance to clarify with an immunologist if you still think this is incorrect

Treatments for COVID-19

Q. I’ve heard of a breakthrough with treating COVID-19 with a low dose steroid called dexamethasone? What were the results?

A. As part of the RECOVERY trial a total of 2,104 patients were chosen at random to receive 6mg of dexamethasone once a day (either by mouth or by intravenous injection) for 10 days. Their outcomes were compared with 4,321 patients chosen at random to continue with normal care alone.  Without the drug, death rates at 28 days were highest in those who needed to be put on a ventilator (41%), intermediate in those who required oxygen only (25%), and lowest among those whose lungs were working sufficiently well (13%). Dexamethasone reduced deaths by one- third in ventilated patients and by one-fifth in other patients receiving oxygen only. There was no benefit among those patients who did not need help to breathe.

Q. How does Remdesivir work?

A. Remdesivir is an anti-viral drug. It works by interfering with the replication of the virus.  Early data suggests it can cut recovery time by about four days. It is now available for early treatment of all hospitalised patients who need oxygen therapy.

Q. What is the current view on the use of hydroxychloroquine to treat COVID-19?

A. Following a large randomised controlled trial it has now been concluded that there is no beneficial effect of hydroxychloroquine in patients hospitalised with COVID-19. See the statement from the RECOVERY project

Q. If hydroxychloroquine doesn’t help people hospitalised with COVID-19, is it any use to as a prophylactic medicine?

A. There appears to be no benefit at all from hydroxychloroquine.

Q. I have heard that interferon beta is being tested as a treatment for COVID-19. What is the status of these trials?

A. Testing the use of interferon beta is part of the ACCORD platform/study (Accelerating Covid Research and Development) study. The aim of the ACCORD study is to fund and support proof of concept trials of drugs/treatments/tests/equipment and if they show promise to feed them into larger trials such as RECOVERY. There are centres across the UK who are administering Interferons to patients as part of the ACCORD and other trials to see if that may provide benefit.​  Read more at

Q. Can heparin be used to treat COVID-19 infection?

A. Heparin, a blood thinner, may be used in a hospital setting to treat complications arising from having COVID-19.  The amount depends upon the level of markers of inflammation and clotting factor activation in a patient’s blood.

Q. Can taking prophylactic antibiotics help avoid a person getting infected by COVID-19?

A. It is more likely that antibiotics prevent secondary bacterial infection in someone who has COVID than preventing COVID altogether.  This is the most likely explanation for benefit observed in some patients given e.g. Azithromycin.

Q. I have heard that ventilators are not the best form of treatment. Is this true?

A. This is true in so far as prevention is better than cure. If people follow social distancing and avoid the virus that is the best treatment. If we find there is a low toxicity drug that can treat COVID-19 from the earliest stage and prevent people getting sick, that is also likely to be a better approach.  At present unfortunately significant proportion of patients who are unwell enough to need to go to hospital will have such poor oxygenation of their blood that ventilation, either non-invasive or invasive is needed.  At present if that happens sadly up to 50% of those patients die.  For the 50% that survive, that would not be possible without mechanical ventilatory support.

Q. How do I find out what clinical trials for the treatments of COVID-19 are taking place?

A. There are several sources of good information on clinical trials that we recommend:

Randomised Evaluation of COVID-19 Therapy (RECOVERY). Based at Oxford University this project has recruited over 11,500 patients in clinical trials to date.

It has a section with information for people who might want to take part in the studies.

Please note that ‘patients may only be included in this study if they have COVID-19 confirmed by a laboratory test for coronavirus (or considered likely by their doctors), and are in hospital. Patients will not be included if the attending doctor thinks there is a particular reason why none of the study treatments are suitable’.

European Commission: Coronavirus research and innovation a database of privately and publicly funded clinical studies around the world

Q. I have read about monoclonal antibody treatments for COVID-19. What are these?

A. Monoclonal antibodies are antibodies that have a single specificity. They recognise and bind to a specific part of a molecule. They can be genetically engineered and produced in large amounts. When they are used in medications the drug name usually ends in ‘mab’.

Researchers are looking to neutralise the COVID-19 virus by using monoclonal antibody cocktails to target specific parts of the virus. In principle, antibodies could be given to patients in the early stage of COVID-19 to reduce the level of virus and protect against severe disease.  First, research has to identify which antibodies in plasma from people who have recovered from COVID have the most anti-viral potential. Then monoclonal antibodies are generated which mimic that property are developed. These are then tested in the laboratory and successful candidates tested in animal models before they enter patient clinical trials.  A publication in the journal Science has recently described such an approach

The drug Tocilizumab, which is a monoclonal antibody against the cytokine interleukin-6, which is over produced during the cytokine storm seen in serious COVID cases, is being tested in clinical trials.

Q. Are people investigating using a combination of drugs to treat COVID-19?

A. There are currently hundreds, if not thousands, of trials worldwide and some of these include combination therapy.


Q. When a vaccine is developed who would be prioritised for immunisation?

A. We are not sure who would be prioritised as these decisions have yet to be taken.  It may be that front-line health workers who are constantly exposed would be offered it first.  Most PID patients are unlikely to benefit from the vaccine depending on whether the vaccine relies on a neutralising antibody or a producing cellular immunity via T-cell responses. The Government has relesaed guidance

Q. Are the vaccines being developed live vaccines and therefore would be unavailable to CVID patients?

A. None of the candidate vaccines proposed are live but the problem is that the vaccine may not work in all PID patients because of the inability to produce the needed immune response.

Q. Since immunodeficient patients don’t develop antibodies to vaccines and once one is (hopefully) developed for COVID-19 will we gain any protection?

A. PID patients would not be eligible for a vaccine trial in the way that they are conventionally set up.  That would be the best way to determine if there was any clinical benefit on reducing infection rates or its severity.  There are many candidate vaccines and their safety and efficacy profile will be clearer, if and when any start to enter clinical practice after the trials. It really is too early to say if they will be of benefit to PID patients at this point in time. 

Q. Since immunodeficient patients don’t develop antibodies to vaccines and once one is (hopefully) developed for COVID-19 will we gain any protection?  For many years we weren’t advised to have the annual flu jab but now do just in case it gives any benefit.  

A. PID patients would not be eligible for a vaccine trial in the way that they are conventionally set up.  That would be the best way to determine if there was any clinical benefit on reducing infection rates or its severity.  There are many candidate vaccines and their safety and efficacy profile will be clearer, if and when, any start to enter clinical practice after the trials. It really is too early to say if they will be of benefit to PID patients at this point in time.

Q. Does having a flu vaccine weaken an elderly immune system leaving you more vulnerable to COVID-19 infection?

A. There is no known link to flu vaccines "weakening" immune systems and no known link between COVID and influenza other than both are viruses and like many cough and cold viruses started circulating in the winter months.  The combination of COVID and flu in the elderly would likely be a very bad one, so we continue to encourage uptake of flu vaccine as a source of protection when possible. 

Q. Would the pneumonia jab help me to avoid COVID secondary infections?  Is this the flu jab?

A. The flu and pneumonia jabs are different and are effective against different microorganisms. Pneumonia jab is effective against Streptococcus pneumoniae (pneumococcus) and the flu vaccine against different strains of the flu virus. See  Neither of these vaccines will offer protection against the COVID.  Please see our page on vaccines

Q. I have had the pneumonia vaccine. Does that give me any protection against COVID-19?

A. This vaccine specifically protects against infection with a bacterium called pneumococcus, which can cause a secondary bacterial chest infection in someone who has a viral pneumonia, but the vaccine does not protect against coronavirus itself.

Plasma therapy for COVID-19

Q.  If enough people recover from COVID-19 could their antibodies be used to help people with serious COVID-19 infections?

A. Biotest, BPL, LFB, and Octapharma have joined an alliance formed by CSL Behring and Takeda Pharmaceutical Company Limited to develop a potential plasma-derived therapy for treating COVID-19. The alliance has already started with the investigational development of one, unbranded anti-SARS-CoV-2 polyclonal hyperimmune immunoglobulin medicine with the potential to treat individuals with serious complications from COVID-19. In the press release they say ’Developing a hyperimmune will require plasma donation from many individuals who have fully recovered from COVID-19, and whose blood contains antibodies that can fight the novel coronavirus. Once collected, the “convalescent” plasma would then be transported to manufacturing facilities where it undergoes proprietary processing, including effective virus inactivation and removal processes, and then is purified into the product.

We will keep you updated on progress when we have more concrete news.

Q. What is convalescent plasma and how might it help people with PID?

A. Convalescent plasma is the plasma obtained from donors who have recently recovered from COVID-19.  For now, it is at the trial phase for use on COVID patients and there is no firm timeline as yet for use for other vulnerable groups.

Q. What is the difference between convalescent plasma and hyperimmune immunoglobulin?

A. The viral inactivation in convalescent plasma is not as extensive as for hyperimmune immunoglobulin, which is fractionated with 2-3 antiviral steps, like IVIG.  Hyperimmune immunoglobulins are a type of plasma derived medicinal products manufactured in the same way as regular immunoglobulin (IG) therapies, but from the plasma of donors who have developed high titres of specific antibodies. Hyperimmune immunoglobulins therefore contain much higher titres of specific antibodies than regular IG therapies and are entirely different products.  In the case of COVID-19 there is currently no hyperimmune immunoglobulin available. Several companies are working on the development of such therapies. The production process would involve using the plasma of many donors who have recovered from COVID-19 and therefore have high titres of COVID-19 antibodies. Once collected, this plasma would then be transported to manufacturing facilities where it will be fractionated into the final product in a similar fashion as regular immunoglobulin therapies. This is a long production process, often lasting between 7-10 months. The clinical trials for this treatment will start at the earliest in July 2020.

Q. How long would a person be protected against COVID-19 by using convalescent plasma?

A. Although there are some promising results, convalescent plasma has not yet been shown to be safe and effective as a treatment for COVID-19. Therefore, it is important to study the safety and efficacy of COVID-19 convalescent plasma in clinical trials.  There is not yet enough validated data on the protection given by convalescent plasma, but a person receiving it would not be protected by antibodies for more than a month.

Q. What is happening with the convalescent plasma trials to treat COVID-19?

A. There are two trials ongoing in the UK: As part of the REMAP-CAP trial convalescent plasma treatment will be for people who have been in intensive care for less than 48 hours and have tested positive for COVID-19. Around 1,000 people are planned to take part in the trial and will receive plasma as part of their treatment. They will have two transfusions over two days and will monitored for 21 days to see how effective this is. The trial has recently been opened for recruitment to the convalescent plasma and currently new hospitals are being set up to participate throughout the country. 

In the RECOVERY trial, the effectiveness of convalescent plasma will be assessed for treating patients with COVID-19 who are in hospital, but not in intensive care.  Around 2,500 people will receive plasma as part of the trial. Like the REMAP-CAP trial, they will receive two doses over two days.

We will bring more information on these trials when we have it.

Q. Have any patients with PID been treated with convalescent plasma?

A. There is currently no data available on this, but PID UK will update this information as and when any reports emerge.

Q. How long does it take for a person with a fully functional immune system to produce antibodies to COVID-19?

A. IgM antibodies are seen in 3-5 days from symptom onset.  IgG antibodies are detectable from day 7 in some patients, but most reliably by day 21.

Hospital appointments and immunoglobulin infusions

Q. Does my immunoglobulin infusion offer any protection against COVID-19?

A. No, it does not as there are no relevant antibodies in it as immunity to COVID-19 in the plasma donor community has yet to be established.

Q. Are there any health risks from catching the COVID-19 virus from donated plasma?

A. The Plasma Protein Therapeutics Association (PPTA) states that ‘Based on strict screening procedures for plasma donors and the established processes of virus inactivation and removal during manufacturing of plasma-derived products, PPTA concludes that the 2019 Novel Coronavirus (2019-nCoV) is not a concern for the safety margins of plasma protein therapies manufactured by PPTA member companies’.  The PPTA member companies include all UK suppliers. 

Q. Are there any problems at present with immunoglobulin supplies?

A. There are no shortages or supply issues as of April 2020. The NHS is monitoring the situation very carefully and the demand management arrangements for immunoglobulin remain in place.

Q. Are centres still able to provide immunoglobulin replacement therapy services?

A. The NHS has recommended that immunology services and other services using immunoglobulin should still support the ongoing provision of immunoglobulin replacement therapy, especially for patients with immunodeficiency. 

Q. I am due an infusion appointment but I haven’t heard from my clinic. What should I do?

A. Contact your clinic and confirm that you should still be attending at the same location or if they are now using homecare or operating from another hospital site.

Q. How are immunology centres maintaining good patient contact during the pandemic?

A. The NHS have recommended that immunology centres services consider having individual discussion with patients, particularly those at the highest risk of COVID-19 about the risks and benefits of attending for immunoglobulin replacement therapy. Many centres have done this. Another recommendation is that centres should set up a generic email for patient queries with access to clinical staff to provide responses to patients.

Q. Because of COVID-19 I don’t want to go to hospital for my IV infusion. Is it possible for me to switch to the subcut so I can do this at home?

A. Yes, you can request that your treatment is switched to subcut method and your centre should discuss this with you. Whether this is a viable option depends on your individual circumstances, and if your centre has the capacity to provide the necessary safety training and delivery.

Q.  Should I attend my outpatient appointment?

A. Wherever possible patients will be offered telephone consultations. If your appointment is considered essential, then you are advised to attend (see below).

Q.  How do I get to my hospital safely if I’m in the highly vulnerable group?

A. If your appointment is non-essential you should re-schedule. If you are attending for essential treatment or tests, confirm with your unit that arrangements are unchanged. Where possible people are encouraged to use private transportation or taxis with the least exposure to others. If travelling on public transport, maintain strict social distancing and travel at quieter times (avoid early morning in particular).

Q. I have an appointment at the hospital. What precautions are the hospitals taking to ensure I am safe from coronavirus infection?

A. All hospitals and staff are risk assessing their clinical areas and who enters them on an ongoing basis. Already all non-essential hospital outpatients, infusions etc have been stopped so that traffic into and out of clinical areas is minimised. Visitors are only allowed in to the hospital to see children (one visitor per child) or those who are at the very end of life, so hospitals are now very quiet places compared to normal. Within the hospitals clinical areas are setup in a way to minimise risk of cross infection.

Q. I have been called into hospital to have my regular immunoglobulin infusion but with all the information about staff not being tested and the issue with inadequate PPE I’m so concerned and frightened about going? Can you advise?

A. PPE is an issue for staff not patients. If patients are not coughing, they do not create a risk for staff with or without a mask. If patients are coughing staff should have masks depending on the level of exposure and full PPE under certain circumstances. The level of PPE that staff have does not impact on infusion care.  If the staff are symptomatic, that is infectious, they will be at home.

Hospitals are also much quieter than usual by nature of routine work being cancelled, but if you remain concerned it is worth discussing options with your health team.

Q. How long can a person go without immunoglobulin therapy before on average, a person’s immunity starts to drop?

A. The half- life of IgG is 17-21 days, so it takes about 3 weeks to fall by half from the level achieved on the day of infusion.  It is generally thought that 12 weeks are needed for all of an infused dose of IgG to disappear from the system, but that varies from individual to individual.

Q. Historically what is the longest length of breaks between treatments that people have had before showing a decreased immunity?

A. In some UK centres and parts of Europe patients with secondary antibody deficiency only have their IgG over the higher risk winter months and then have 6 months off.  The choice to do this must be based on full knowledge of the patient history.

Q. Do I need to understand my antibody levels to make an informed choice about attending hospital for my infusion?

A. Please see the answer to the question above but yes, an informed choice requires knowledge of how low the antibody levels were before the treatment was started.

Q. The Government says I’m extremely vulnerable and must shield myself at home. This seems to contradict making a trip to hospital. I’m confused. 

A. The government advice is quite clear on this:

"What should you do if you have hospital and GP appointments during this period?

We advise everyone to access medical assistance remotely, wherever possible. However, if you have a scheduled hospital or other medical appointment during this period, talk to your GP or specialist to ensure you continue to receive the care you need and determine which of these appointments are absolutely essential.

It is possible that your hospital may need to cancel or postpone some clinics and appointments. You should contact your hospital or clinic to confirm appointments."

There are many people needing treatments who are vulnerable e.g. dialysis and so hospitals are assessing the need, asking if treatment can be done another way e.g. having infusions at home, can the treatment be stopped?  If this is not possible people should come to hospital in a way that minimises contact outside, but with strict social distancing that is much easier now and there are now limited flows of people in the hospital.

Q. How do I weigh up the benefit over risk of attending a hospital appointment? Is it safer for me to self-isolate as long as possible 12 weeks plus, or do I go into a scheduled hospital for treatment soon, ultimately putting myself at possible risk?

A. This is a clinical and personal judgment. Both options have risk and without all the information this cannot be balanced. Talk this through with your health team or if not available your GP who will have more information and who may be able to call the consultant directly if needed. As you will appreciate PID UK cannot provide you with an individual risk assessment.

Q. Will increasing my dose of immunoglobulin help me better fight off COVID-19 infection?

A. No, the current immunoglobulin products do not have anti-COVID-19 antibodies there is no therapeutic value in increasing the dose. The dose you are prescribed is already tailored to help protect against other infections.

Q. I give immunoglobulin infusions to my child. Do I have to take extra special precautions?

A. The only circumstances under which you would modify the infusions would be if you or your child had symptoms of COVID. Under all other circumstances, the aseptic technique you follow should be adequate to protect you and your child from transmission of infection at the time of infusion.

Q. Are companies developing an anti-COVID-19 plasma product?

A. The companies Biotest, BPL, LFB, and Octapharma have joined an alliance formed by CSL Behring and Takeda Pharmaceutical Company Limited to develop a potential plasma-derived therapy for treating COVID-19. The alliance will begin immediately with the investigational development of one, unbranded anti-SARS-CoV-2 polyclonal hyperimmune immunoglobulin medicine with the potential to treat individuals with serious complications from COVID-19.

Testing for COVID-19

Q.  What is the test for COVID-19 and who in the NHS are being tested?

A. There are two main types of COVID-19 tests:

Polymerase chain reaction (PCR) testing looks for the presence of the virus’ genetic material (RNA) on a nasal or throat swab. These tests can tell whether someone has an active infection.

The other type is serological testing. This type of blood test looks for the presence of antibodies produced by the immune system against COVID-19. If anti-COVID-19 antibodies are present in the serological test then that means that a person has had the infection in the past. People with weakened immune systems, though, may not make these antibodies properly.

In the NHS the main use of the test is for the presence of virus in a symptomatic individual. No symptomatic staff should be in contact with patients.  In asymptomatic staff some hospitals have tested some people who have had high-level exposure from family members or work. The majority of asymptomatic staff who have been exposed are negative on the PCR test.  As the epidemic progresses and NHS are exposed more and more to COVID-19 positive patients, it would not be practical or possible to test staff every day.  So at present asymptomatic staff are not being tested. 

NHS staff who have had symptoms and self-isolated for a week may be tested to make sure they no longer have active virus in their nose/throat before going back to work and seeing patients unless they are completely asymptomatic at that point.

Q. People with PID can’t make antibodies in the same way as healthy people so how will antibody serological testing work for PID patients?

A. Some patients with mild antibody or other immune deficiencies may make a response that is detectable in serum, but the majority of PID UK members will not make a detectable antibody response. If relaxation of social distancing is based on antibody status, there will hopefully be specific guidance for groups that don’t make antibodies.

Q. When will testing for COVID-19 extend to the highly vulnerable?

A. COVID-19 testing should in theory be available soon to all after the Government announced a significant expansion of the screening programme.  You can read more about testing for COVID-19 at  We will keep the community up to date on developments. We do not advise anyone to buy home testing kits. 

Q. I have been in contact with someone who is asymptomatic but who has tested positive for COVID. I have been told to quarantine for 14 days but can I get tested?

A. At present there is no provision for routine contact testing of asymptomatic individuals. This is the official information we have found:

Q. Would someone who has had a COVID-19 infection and recovered be immune to the virus in future?

A. They are likely to be immune to the current version (strain) of the virus. However, the current knowledge of the COVID-19 virus is limited as yet so questions remain as to how long the immunity will last, will the virus mutate to overcome the immunity, or if people who had mild or no symptoms gain the same protection.  Research will help give answers to these questions.

COVID-19 research

Q.  What research studies are being done on the impact of COVID-19 on the PID community?

A. PID UK in collaboration with UKPIN is encouraging people with PID to register for this APP COVID-19/. We are asking that everybody who registers to use the App to provide details of their name and postcode to their immunology teams or PID UK, so that the relevant information can be pulled together at the later date.  So if you do take part please do let us know at and send us your details.

Further information about the app can be found on following this link:

Q. Why is this research important?

A. Information is key in understanding of the spread of infection and its impact on the PID community.  Please do get involved as this will help inform us on the impact of COVID and how better strategies for dealing with the pandemic might be developed. 

Q. I have signed up for the COVID- 19 PID APP tracker study but it doesn’t ask questions specifically relating to PID. Why is that and does it matter?

A. The APP we are encouraging the community to get involved with is generic and not PID specific. Making the APP PID specific would have taken time and resources and time is pressing to collect the data. We are asking those that take part to inform their treatment centre or PID UK about their involvement by sending us details of their name, email address and postal code. This will enable cross-correlation of the information submitted with the data held in the UK PIN registry so that PID relevant data can be analysed.

Q. Is the COVID-APP tracker only for people who live in England?

A. No people in all four nations can take part.

Q. How will the findings of COVID-19 research in the PID community be compared to that of the general population who are following strict social distancing?

A. The general population data will act as a control group. The PID community data will show how effective social distancing is at preventing transmission in this group and will allow follow-up on the outcome of infection.

Q. How is the NHS building a picture of how the COVID-19 outbreak is affecting people and how it is spreading?

A. The government has launched a coronavirus status checker that will help the NHS coordinate its response and build up additional data on the COVID-19 outbreak.  NHS asks people to share their coronavirus symptoms to help others.  Please encourage friends and family to take part.

Q. What is being done to develop treatments and a vaccine against COVID-19 and how long is this going to take?

A. Research is happening at breakneck speed with collaborative efforts being forged between companies, laboratories and researchers around the world.

There is an “adaptive” protocol national trial called ‘RECOVER’, which changes as new treatments emerge. There are trials of anti-virals and trials of potential vaccines are already place. Several companies are developing or testing currently available anti-virals against the COVID-19 virus, this includes testing those that were found to be effective against the SARS virus and EBOLA. Another research avenue is synthetically engineering antibodies that could be able to block the virus infecting human cells. As with all research this will take time, for example it is not expected that manufacturers will be able to produce a mass-produced vaccine until the second half of 2021.

Q. Will highly vulnerable people have to stay in shielding until a vaccine is released or antibodies to COVID-19 are available in our infusions?

A. There was considerable delay in creating a Swine-flu vaccine when that epidemic arose.  What was different at that time was the availability of anti-viral therapy. For COVID-19 it may be some time before a vaccine is available, so the greatest hope for reducing shielding for the most vulnerable lies in the RECOVER project and similar treatment trials. Once we have effective medicines to treat or prevent more severe infection it is likely shielding will be withdrawn. Given the huge numbers of patients being recruited into the studies, it is estimated to take 28 days to determine how effective any one-treatment arm of the clinical trial will be.

Q. How long will it take for herd immunity to COVID-19 to develop within the UK population?

A. Herd immunity usually requires 60-70% of the population to have had the infection or be vaccinated, so in the UK, that is approximately 40 million people. The rate at which the population acquires infection is dependent on exposure.  At present the infection rate has fallen to less than 1, which means that every infected person is now infecting less than one other person. If that continues we may end up with small outbreaks that can be contained by the use of technology e.g. contact tracing apps on phones.

Q. A vaccine when it is developed might not work for people with PID so what treatment options might be available to offer us protection?

A. For PID patients we would hope that hyper-immune globulin becomes a reality in a short space of time, additional passive immunity could then be given either following a known exposure to a COVID infected individual or alongside regular treatment until there is a high enough level of protective immunity in regular IVIG/SCIG. The anti-virals and other medicines being developed to treat COVID are likely to be a quicker route to offering protection or treatment, with plasma therapies coming along after. But all this approaches are being developed at pace and there is a long history of producing hyper-immune globulin that we can tap in to.

Q. What is the COVIDENCE research study?

A. The COVIDENCE UK national research study is designed to find out whether people with conditions such as PID may be at increased risk of coronavirus disease. The researchers are looking to recruit a broad mix of people from all over the UK, including those who have NOT had coronavirus infection, and those who HAVE already had proven or suspected coronavirus infection. The study will involve filling in an on-line questionnaire to collect information about your lifestyle, diet, longstanding conditions and prescribed treatment. Completion takes 30-60 minutes. After that, you will be contacted monthly via email to report possible symptoms of coronavirus disease. The data you provide will be linked to your medical records, to allow the study team to investigate whether coronavirus infection may affect long-term health.  You must be aged 16 years or older to take part.  

Mental well-being

Q. I am finding it hard to cope with self-isolating.  What advice can you give?

A. Our top tips are to stay connected with friends and family through apps such as Facetime, Zoom, Houseparty etc; sticking to some sort of routine gives you a sense of control so develop a routine and plan for your day; maintain a healthy lifestyle that involves some type of exercise, exercising will help you sleep better; limit you exposure to the news and social media etc.

For more helpful information visit

Q. How can I explain what is happening with COVID to my children?

A. As we read from the charity Childline statistics children are being seriously impacted emotionally by the pandemic. Our advice is to make time to talk; find out what your children know, explain COVID in a way your child understands and tune in to your child’s feelings. There are lots of great resources out there to help you to do this.  Some can be found here:

Guidance for parents and carers on supporting children and young people’s mental health and wellbeing during the coronavirus (COVID-19) outbreak

You can access a full list of resources at this webpage:

Q. I am worried that my partner is not coping well mentally with the current situation and is showing signs of depression.  What should I do?

A. It is natural to feel a range of emotions, such as stress, worry, anxiety, boredom, or low mood. Many people feel distressed by the constant news and overwhelming amount of information at this time.  However, if you feel they need professional help encourage him to talk to his GP, contact the charity SANE, the charity MIND; the charity Shout the Samaritans (free phone number 116 113) or, in an emergency, attend your local accident and emergency department.

Q.  Someone in my family is on the ‘frontline’ and the situation is clearly impacting badly on their mood and mental health. What can I do to support them?

A. Listening to them and acknowledging the strain they are under and saying that how they feel is perfectly normal and understandable are good starting points. You should ask them to contact and discuss how they are affected with their occupational health at work team as soon as possible. This support helpline has been set up specifically for NHS staff You should also encourage them to contact their GP for support.

Please find information on support services for mental health and wellbeing on this webpage:


Q. I am on statutory sickness pay (SSP; £95.85/week) and just cannot get by on this. What other benefits can I claim?

A. This website gives details of the benefits you may be entitled to whilst claiming SSP These include Personal Independence Payment (PIP) and Employment Support Allowance (ESA). PID UK can send you guides as to how to fill out the PIP and ESA forms. Just get in touch with us at

Q. I must go to hospital for my treatment. Is there any scheme whereby I can claim back the cost of travel?

A.The Healthcare Travel Costs Scheme (HTCS) scheme may help you. Details can be found at:

However, you do need to meet the exact criteria to qualify but if you are already on some sort of benefit then this is worth applying for.

Q. How do I get help with health costs for prescriptions etc?

A. Prescription charges only apply in England.  If you are on any type of benefit you may qualify for help. Find out more at

Q. I have been furloughed from my work. What does this mean and what are my rights?

A. To furlough means to “lay off or suspend temporarily”.  It is not a recognised term in UK employment law, although it is commonly used in the USA. Government guidance says someone is furloughed if they remain employed but are not undertaking work.

PID UK is not a legal expert on the furlough scheme but this link provides useful information on various scenarios  See also this website which looks at this issue from the employer perspective

I need practical help!

Q. I’m shielding and finding it really difficult to get a home delivery slot for food deliveries. What should I do?

A. Yes, the demand for supermarket delivery slots is huge and seems to be outstripping what can be provided even if you are in a high priority group.  Friends, family, neighbours may be able to help and if this is not possible you could try and find local support groups through these websites: and at .

Other options include trying online shopping using local shops. There are now lots of small businesses now doing home delivery services in order to keep their businesses afloat and many do not charge a delivery fee if a minimum order is placed. Remember people who deliver things to you must not come into your home and you must not leave your home to meet them.

If you self register on the government website, you are more likely to become eligible for home delivery and support:
The medical content of these FAQs was reviewed by the Chair of PID UK’s Medical Panel, 20th April,18th May, 19th June 2020.