COVID-19 vaccines and PID

On this webpage you will find the latest information on the COVID vaccines and answers to frequently asked questions.

Statement from PID UK

In response to the positive news about the development of COVID-19 vaccines, Dr Matthew Buckland, Chair of our Medical Advisory Panel, issued the following statement on behalf of PID UK:

'The recent news concerning the vaccines is highly encouraging and we look forward to the full results being published. Patients with primary antibody deficiency, including CVID and XLA, cannot produce reliable antibody responses, by definition. Those with combined immune deficiencies, including SCID, will not make good T cell responses to a vaccine. For these individuals a non-live vaccine is'safe' but will not offer protection against COVID. For patients with milder immunodeficiencies e.g. specific antibody deficiency, MBL deficiency, Selective IgA deficiency a normal vaccine response is likely. For PID patients a vaccine means the likely development of robust herd immunity, protecting them by reducing the amount of virus circulating in the community.  It will also mean reliable antibody levels in plasma donors, reflected in replacement IVIG/SCIG about 6 months or so after the vaccine is widely taken up.  As with the advice on seasonal flu vaccine, we encourage PID patients to have a safe vaccine, when available, since they may get some albeit minor benefit, and as a way of encouraging those around them to have it, where the highest benefit is likely to be derived.'

This statement has been endorsed by UK PIN.

PID UK endorses the statement released by the British Society for Immunology on COVID-19 vaccines for patients who are immunocompromised or immunosuppressed (19th January 2021)

This reads in full:

'This statement has been developed by the British Society for Immunology COVID-19 and Immunology Taskforce which is made up of experts on how the immune system works. This statement is aimed at people who either have a medical condition which means their immune system doesn't function optimally or people who take medication that suppresses their immune system.

All three of the COVID-19 vaccines (Pfizer/BioNTech; AstraZeneca/Oxford; Moderna) that have currently been approved for use in the UK are safe to use for people who are immunocompromised or immunosuppressed. None of these approved COVID-19 vaccines contain any active SARS-CoV-2 virus. The Pfizer/BioNTech and Moderna COVID-19 vaccines are both mRNA vaccines which contain a small piece of genetic code from the SARS-CoV-2 virus to generate an immune response. The AstraZeneca/Oxford COVID-19 vaccine is a viral vector vaccine, which uses an inactive unrelated virus (the viral vector) which cannot replicate to deliver SARS-CoV-2 genetic material to generate an immune response.

While COVID-19 vaccination might provide a lower level of protection in people who are immunosuppressed or immunocompromised compared with the rest of the population, it is still very important that you get vaccinated as it will offer you a certain amount of protection against catching COVID-19. It is important that you receive two doses of the vaccine to maximise the protection that vaccination offers you.

COVID-19 vaccination will work best if you have a functioning immune system. For people currently undergoing whole organ or stem cell transplant and who may be severely immunocompromised, you should talk to your medical treatment team about the most suitable time to get your COVID-19 vaccination.

It's important to remember that the COVID-19 vaccines can protect you from getting seriously ill with COVID-19, although if your immune system isn't functioning optimally this protection will not be complete. We don't currently have any evidence that the vaccines can stop you passing on the virus to others even if you make a good immune response. This means that even after you have been vaccinated, it's very important that you still follow social distancing guidelines and wash your hands regularly.'

On Wednesday 30 December 2020, the Medicines & Healthcare products Regulatory Agency (MHRA) announced that the Oxford/AstraZeneca COVID-19 vaccine had been approved for use in the UK, with a dosing schedule of 12 weeks between first and second dose. In this announcement, the dosing schedule for the Pfizer COVID-19 vaccine was also changed to a 12-week gap between first and second dose. These announcements were made based on recommendations from the UK's Joint Committee on Vaccination and Immunisation (JCVI).

JCVI changes to the vaccine dosing schedule

PID UK endorses The British Society for Immunology (BSI) statement on their position and rationale on these announcements concerning the change of dosing schedule for the two approved COVID-19 vaccines. You can read the full BSI statement here. It is important to note that everyone will still receive their second dose and this will be within 12 weeks of their first.  The second dose completes the course and is important for longer term protection.

Frequently asked questions

You can download our COVID vaccine FAQs infographic here.  

Q. Which of the COVID vaccines is best for people with PID?

A. Both the Pfizer/BioNTech and Oxford-AstraZeneca coronavirus vaccine in clinical trials, have been found to be safe and offer good protection. However, we do not yet know how effective these vaccines might be for people with primary immunodeficiency.  Please see read our statement above on vaccines for people affected by PID and news of a research project that will help understand what protection is given.

Q. Do I have a choice about what COVID vaccine I'll receive?

A. The vaccine you will be offered will be dependent largely on the supplies available from the manufacturers and the logistics of the roll out of the COVID vaccine programme.

Q. Should I contact my immunology centre or GP about getting the COVID vaccination?

A. No, all services are over stretched. Wait to be contacted by the NHS, your NHS number is being used to track people wherever you are vaccinated. In some areas you will be contacted by a Hub not your own GP, but they will contact you. Your immunology centre will not have any vaccine and will not have a means to liaise with the vaccination hubs.

Q. Who will let me know when I can get the COVID vaccine?

A. The NHS is working through a priority list as set out by the Joint Committee on Vaccination and Immunisation (JCVI). You SHOULD NOT contact the NHS or your local GP surgery about the COVID vaccination. The NHS will let you know when it is your turn to have the vaccine.  This will be in the form of a letter/email from your GP or the NHS. It will include all the information you need to book appointments, including your NHS number.

Do not respond to texts, emails or messages that are not from your GP/NHS or that ask for personal details including bank details. There are a number of scams using COVID vaccination to get peoples' details. You will either be sent an appointment or there will be a web booking system, but you will not have to enter personal details.

Q. Can I be vaccinated if I have had a severe allergy?

A. The Pfizer vaccine is not recommended for people who have had anaphylaxis (severe allergic reaction) to drugs, vaccines or food.  It is still recommended when there is a history of allergy without anaphylaxis, but this would be discussed with you.  Every person attending for vaccination will be asked. If you cannot have the Pfizer vaccine, you will be added to a wait list for the Astra-Zeneca vaccine.

Q. Do I need to be registered with a GP to get the vaccine?

A. To get the vaccine, you will need to be registered with a GP surgery. If you aren't you will have to get registered or wait until the vaccine is offered more widely at other locations.

Q. Can I have pay for a private COVID vaccination?

A. COVID vaccines will ONLY be available through the NHS.

Q. What are RNA vaccines and how are they different from 'conventional' vaccines?

A. RNA is an abbreviation for ribonucleic acid. mRNA acts as a messenger carrying instructions from DNA to make proteins.

Traditional virus vaccines use actual viruses that are weakened so they do not harm people and have to be grown in chicken eggs; a process that can take many months.  By contrast, the COVID-19 RNA vaccines delivers part of the virus genetic coding for the 'spike' protein. This RNA is then coated in a lipid so it can enter the body's cells and this is injected into the patient. The RNA vaccine then enters the cells and instructs them to produce the COVID spike protein. This prompts the immune system to produce antibodies and activate T cells to destroy infected cells.

RNA based vaccines are easier and faster to develop, once scientists have the genetic sequence of the protein they want to create.  Protein based vaccines are harder to manufacture but many successful vaccines have been produced in this way, e.g. Hepatitis B and some flu vaccines use this method.

Q. How much do we know about the vaccines recently in the news?

A. Pfizer/BioNtech, Oxford/AstraZeneca and Moderna have recently announced highly successful results from their COVID-19 vaccines trials, and results from other vaccine trials are expected soon. 

Interim findings from Pfizer/BioNtech indicate their RNA vaccine is 90% effective in preventing COVID-19. Two doses are needed to give protection. The vaccine has been tested on 43,500 people in six countries and no safety concerns have been raised. However, the data presented is not the final analysis as it is based on only the first 94 volunteers to develop COVID so the precise effectiveness of the vaccine may change when the full results are analysed. On the 23rd November the Medicines and Healthcare products Regulatory Agency (MHRA) approved the use of this vaccine for a mass vaccination programme.

The Moderna trial involved 30,000 people in the US and the analysis was based on the first 95 to develop COVID-19 symptoms. Two doses are needed to give protection. Only five of the COVID cases were in people given the vaccine and 90 were in those given the placebo treatment. The company says the vaccine is protecting 94.5% of people. The data also shows there were 11 cases of severe COVID in the trial, but none happened in people who were immunised.  Again, these are interim results.

The Oxford University/AstraZeneca vaccine uses a modified, inactivated cold virus to carry the genetic information of COVID into the body to get the immune system to mount a response. Early data from the clinical trials suggests it is safe and could protect up to 70% of people. There is good data that it will work in elderly people.  The vaccine does not need to be shipped or stored in an ultra-cold environment, it is also considerably cheaper than the Pfizer/BioNtech and Moderna vaccines.

On the 30th December 2020 the government accepted the recommendation from the Medicines and Healthcare products Regulatory Agency (MHRA) to authorise Oxford University/AstraZeneca's COVID-19 vaccine for use. See
https://www.gov.uk/government/news/oxford-universityastrazeneca-vaccine-authorised-by-uk-medicines-regulator

There are some unknowns about the vaccines, for example, we do not know if the vaccine stops you spreading the virus or just from developing symptoms; or if it works equally well in high-risk elderly people.  We also do not know how long the immunity will last and this question will only be answered by long-term follow up studies.

Q. Have any of the vaccine trials involved people with primary immunodeficiency? 

A. We do not know precisely the mix of people who have taken part in the clinical trials but PID patients would not be eligible to take part in a vaccine trial in the way that they are conventionally set up.  

Q. Is there any evidence about the effectiveness of the RNA vaccines for PID patients?

A. In short, no, because PID patients haven't been enrolled in the trials.  Our experience to date of patients with antibody deficiency and COVID-19 infection suggests that the antibody response is at least as important as T-cell responses for clearing this virus. The pre-clinical vaccine trial data suggests that antibody is essential for preventing primary infection. There will be more research data available about this over the coming months. The preliminary data indicates, therefore, some people with certain types of PID may not respond to the vaccination to get reliable protection.

Q. I have CVID, and since many other immunodeficient patients don't develop antibodies to vaccines and have poor T cell responses why are you encouraging people to have the vaccine when available?

A. Taking flu as an example, unfortunately we don't have routine antibody tests or T-cell function tests to see if patients have responded to vaccination given in the clinic and we suspect that many will not.  We do know the licenced vaccines are safe. We also know that those with poorer immunity such as the elderly can make a useful response. If patients might derive even a tiny amount of protection from a safe vaccine, many doctors think that is a worthwhile balance, given that influenza like COVID can result in deaths.  The exception to this is we do not recommend live vaccine in many children with more significant PID.

The PID community can do its bit to encourage friends and family to have an approved COVID vaccination. This will help protect those who don't have immunity to COVID-19 infection.

Q. Do allergic reactions to vaccines usually occur?  

A. The Department of Health (DOH) green book (the DOH vaccine reference book) gives the following statement:

'Anaphylaxis
Anaphylactic [severe allergic] reactions to vaccines are extremely rare but have the potential to be fatal. Between 1997 and 2003, there were 130 reports to the Medicines and Healthcare products Regulatory Agency (MHRA) of anaphylaxis or
anaphylactic-type reactions following immunisation (excluding the meningitis C campaign), although no deaths as a result of the reaction were reported. In that time, around 117 million doses of all vaccines were supplied to hospitals and GPs.
This rate (approximately one per million vaccine doses) is similar to that reported from other countries (Bohlke et al., 2003; Canadian Medical Association, 2002).'

Other reactions are non-anaphylactic vaccine events and they are more common, but can usually be managed with antihistamines or will go of their own accord.
In the vaccine trials of COVID vaccines, there were no anaphylactic events. 

In hospital settings, healthcare workers are often sensitised to cleaning agents, latex and other compounds to which they may have inadvertently been re-exposed in their vaccinations. 

The MHRA says that anyone who has previously had a significant allergic reaction to a medicine, food or another vaccine should not have the Pfizer-BioNTech jab and anyone due to receive their vaccine should discuss any medical history of
serious allergies with their healthcare professional beforehand.

More information is needed from the regulators and NHS England about the exact causes of the allergic reactions seen in the two NHS workers who received the Pfizer-BioNTech jab.

This is a useful article on vaccine safety: Covid vaccine: What you need to know about vaccine safety - BBC News

Q. Will carers/immediate family members of clinically extremely vulnerable people be prioritised for vaccinations as this may protect those most at risk to COVID?

A. This decision has yet to be made by the Joint-Committee on Vaccination and Immunisation (JCVI) committee. PID UK had representation at a recent APPG event involving the Chair of this committee, Professor Robert Read, and asked this question. We were assured that this is under consideration. The committee is waiting for the results of studies assessing whether any of the vaccines can prevent transmission of COVID.  If the data is convincing, they will revisit the vaccine prioritisation programme to include carers/family members of the clinically vulnerable. We will keep you posted on this.  

Q. What wider benefits will a COVID vaccination programme have for the primary immune deficiency communities?

A. Wider benefits include the likely development of robust herd immunity, protecting immunodeficiency patients by reducing the amount of virus circulating in the community.  It will also mean reliable antibody levels in plasma donors and this will be reflected in replacement IVIG/SCIG therapies after about 6 months or so after the vaccine is widely taken up. 

Q. Will be the COVID vaccines be appropriate for pregnant women and children under 16 years?

A. Pregnant women should not have the vaccine as there is no data on the safety of use in this group.  For the under 16 years there is also not yet enough data to make a conclusion on safety or efficacy. Since most children have mild or asymptomatic disease, they were not prioritised in the first trials, but Pfizer/BioNtech and Moderna are already recruiting to paediatric studies.

Q. How safe are the vaccines and who will monitor their safety?

A. All vaccines undergo extensive safety testing and must meet exacting standards to progress through the different stages of clinical trials. Their use must be approved and licensed before their use through expert review of all trial data through the Medicines and Healthcare products Regulatory Agency (MHRA). They check that the trial meets the necessary efficacy and safety levels. You can find out more about this process at http://vk.ovg.ox.ac.uk/vaccine-development

Q. When will we know if the vaccines are working for the general population?

A. The government is keeping tabs on infection by age and location.  We should start to see a fall in cases and hospitalisation in those groups targeted by the vaccine first within 2 months of the vaccination roll-out.

Q. How will the safety of the vaccines be monitored after the vaccination programmes start?

A. The safety of the vaccines will be monitored on an ongoing basis, as with all licensed drugs. This is undertaken by the Medicines and Healthcare products Regulatory Agency (MHRA) through the Yellow Card Scheme. Reports of suspected side effects are sent to the MHRA by drug companies (who are obliged to pass on any reports of suspected side effects that are defined as serious), health professionals, and patients themselves.

The data are evaluated each week, and the reported side effects are compared against the expected side effects as detailed in the information sheet for the vaccine. If a previously unidentified reaction emerges, or the frequency of reactions is not in line with what is expected, then the MHRA will investigate carefully. What happens next depends on the kind of side effect identified, but options include insisting that details of the new side effect are given in the product information leaflet or giving out warnings identifying groups of patients who should not be given the vaccine. In rare circumstances, the vaccine may be withdrawn from use.

Q. Will people with antibody deficiency get any direct benefit from having a vaccination?

A. This remains unclear and until we know most doctors are likely to give the same advice as flu-vaccine, if it gives even a tiny benefit from T-cell responses to reduce either the risk of infection or to make the illness less severe then as long as it has been licenced and is safe, then antibody deficient patients should consider having it.  We should also acknowledge that some people with e.g. specific antibody deficiency may make a good response to COVID vaccines, just as they might to tetanus but not to e.g. pneumococcus.

Q. Who decides on the priority list for a COVID vaccination programme?

A. The Joint Committee on Vaccination and Immunisation (JCVI) provides advice to the Government about this. They examine data on who suffers the worst outcomes from coronavirus and who is at highest risk of death.  More information can be found at https://www.gov.uk/government/publications/priority-groups-for-coronavirus-covid-19-vaccination-advice-from-the-jcvi-30-december-2020

Q. Who will be prioritised for the COVID vaccination programme?

A. Age is, by far, the biggest risk factor for COVID so older age groups will be targeted first.

The JCVI guidance says the order of priority would be as below:

    1.    residents in a care home for older adults and their carers
    2.    all those 80 years of age and over and frontline health and social care workers
    3.    all those 75 years of age and over
    4.    all those 70 years of age and over and clinically extremely vulnerable individuals
    5.    all those 65 years of age and over
    6.    all individuals aged 16 years to 64 years with underlying health conditions which put them at higher risk of serious disease and mortality
    7.    all those 60 years of age and over
    8.    all those 55 years of age and over
    9.    all those 50 years of age and over

    It is estimated that taken together, these groups represent around 99% of preventable mortality from COVID-19.

    Q. When will the vaccines become widely available?

    A. The vaccines need to authorised for use by the MHRA first and their decision will be based on the full data as to the safety and how well the vaccines work to protect against COVID.  The Government has yet to announce the start date of an immunisation programme but infrastructure and logistical plans are being drawn up.

    Q. Will the vaccines stop the spread of COVID?

    A. It is unlikely that a vaccination programme will be able to fully stop the spread of the COVID virus unless we see high level uptake of a highly effective vaccine. The disease may well become endemic in the global population like flu and have to be managed on a yearly basis through vaccination programmes.  This means that everyone, and most importantly those clinically vulnerable should continue to take measures to protect themselves from catching the virus.

    Q. Why are so many different types of vaccines being developed?

    A. Given the scale and importance of the challenge of developing a COVID vaccine and the need for vaccination programmes to be available globally, different strategies and approaches are being used in the hope that some of these avenues of research and development will pay off. The pace of the research is unprecedented.  

    Q. How can I find out more about the development of COVID vaccines and vaccination programmes?

    A. These websites may be helpful:

    Reviewed by the Chair of the PID UK Medical Advisory Panel 18th November 2020 ; updated 24th November 2020; updated 4th December 2020; updated 17th December; updated 12th January 2021.