CORONAVIRUS UPDATE: Mon 26th July 2021
As the Coronavirus pandemic continues, advice from the government and NHS will be regularly changed and updated. On this page we attempt to interpret the latest information and advice into guidance for people with AT and their families and carers.
Covid-19 and AT
In May 2021, the AT Society organised an important international virtual meeting to focus on what we know so far about how people with AT have been affected by Covid 19. It was attended by clinical and scientific AT experts from around the world, including Michel Willemsen, Jenny Wright, Ran Zhang, Emilia Cirillo, Domenico Delia, Sara Biagiotti, Claudio Pignata, Trudy Burders, Daniel Amps-Woodward, Barbara Pietrucha, Penny Jeggo, Rashmi Shukla, Rob Dineen, Setsuko Hasegawa, Margherita Doria, Howard Lederman, Cynthia Oviatt, Luciana Chessa, Sharon McGrath, Oscar Porras, Marek Ussowicz, Sara Reiling and Sean Kelly. Kay Atkins, Anne Murray and Emma Lukins also attended from the AT Society.
Professionals attending from our UK based clinics included: Mohnish Suri, William Whitehouse, Lucy Cliffe, Jane Flint, Sandra Hufton and Elizabeth McDermott.
We would like to say a special thank you to Penny Jeggo and Cynthia Oviatt for contacting all of the AT experts and collaborating with the AT Society to make this event successful.
Prior to the meeting, an international survey was conducted to gather data provided by immunologists on individuals with AT who had been known to be affected by Covid 19.
- 26 individuals across the world, with AT, were reported to have been infected by Covid 19
- Many countries reported no affected individuals with AT
- Of the 26 individuals affected, 6 were adults and 16 were under 18 yrs. old. The remaining 4 did not have an age reported
- All had mild respiratory symptoms
- 1 individual required hospitalisation for 4 days because of acute neurological changes
- Some individuals had a cancer diagnosis. Several had immunodeficiency and lung problems, but none were not severely affected by Covid19
- The most common symptoms were cough and fever (as observed in the general public)
- Some infected individuals with AT were on the EryDel steroid trial. Their infections did not seem to be different to those observed in people not on the trial. (Please note that being on the EryDel trial should not affect the decision to use dexamethasone in treating anyone with AT showing significant symptoms from a Covid infection)
All agreed that
It is unclear if this data represents a lower prevalence of severe disease than in an equivalent subset of the general population, since the individuals are young and age is the major risk factor for severe disease.
Vaccination is recommended for all individuals with AT since the risk from side effects is very low, compared to the danger of Covid 19 infections. There is no evidence that AT individuals should be at increased risk for any known vaccine side effects.
There is no evidence at this time that any of the licensed vaccines are better or worse than the others, though differences may become apparent as long-term data are collected.
The good news is the data suggests that people with AT are not at greater risk of severe or life threatening infection from Covid-19. It seems no worse for them than for other people of the same age.
When well, individuals with AT should follow the local recommendations for Covid precautions, but generally do not need to be more cautious. Of course, individuals with specific problems should seek guidance from physicians who know them. They can also always contact the AT Society if they have specific worries or concerns by contacting support.
Although parents will feel concerned about the lifting of pandemic restrictions, returning to normal family, school, college, work and social life was viewed as being a good thing for the mental and physical health of people with AT and their families.
Covid-19 Research update
The UK Primary Immunodeficiency Network (UK PIN) are about to launch a research study to explore how effective COVID vaccinations are for people affected by primary and secondary antibody deficiency (PAD/SAD). This is a vital piece of research because as yet, no one knows what level of protection people with antibody deficiency will develop after immunisation through antibody or T-cell responses.
This new study will hopefully help increase understanding about how COVID affects people with antibody deficiency, including finding out how common asymptomatic/symptomatic COVID infection has been in this group, how often/how long the virus persists and if COVID infection results in protective antibody or T-cell responses.
The researchers aim to recruit over 1000 adults with PAD/SAD over the next six months through collaboration with as many immunology centres as possible.
Read more about this exciting new study here:
Covid-19 Vaccine Queries
We continue to receive numerous calls and emails from the AT community with questions about Covid-19 vaccines. Please be assured we continue to communicate with both specialist AT services in Nottingham and Cambridge about all these queries.
Our clinicians tell us there are still lots of unanswered questions about the virus and vaccines and say the situation remains very ‘fluid’ and is rapidly evolving.
Immunologists have explained that both the Pfizer and Astra Zeneca vaccines might be considered unsuitable for individuals with an AT diagnosis NOT because there are safety concerns, but because people with AT may not respond to the vaccines.
These vaccines are not considered live vaccines and, as with the influenza vaccine, people with immune deficiency are being advised to take the vaccine if it is offered, as they may derive some benefit.
Studies are in progress to look at the nature of the immune response to these vaccines in a wide range of individuals.
Please keep checking the PID UK website and vaccine information section on the UK Govt website for further information via the relevant links below:
Read PID UK vaccine information here:
Read UK Govt vaccine information here:
Vaccine information for children with AT:
Advice received from the Immunology team at the Nottingham Paediatric AT Service, is for all children with AT to accept a Covid-19 vaccine when offered. If there are reasons why any child cannot have the vaccine e.g. allergies, this will be assessed by the vaccine administration team. We have also been advised that it may take some time before children are offered a vaccine.
Vaccine information for adults with AT:
Advice received from the Immunology team at the Papworth AT Service, is for all adults with AT to accept a Covid-19 vaccine when offered. If there are reasons why someone cannot have the vaccine e.g. allergies, this will be assessed by the vaccine administration team.
Telling the NHS about AT and Coronavirus
If you need to contact the NHS about a possible case of Coronavirus in someone with AT, you must tell them about AT. If you are not sure what to say, we have prepared a document to help you here.
If someone with AT or a family member has Covid-19 symptoms
If someone with AT (or a close family member) shows any symptoms of the virus, contact 111 as soon as possible. Explain that the person has AT and what that means (refer them to our website).
We also strongly advise that you let us know via firstname.lastname@example.org or by phoning 01582 760733 so that we can make sure you have the relevant information and support. If you have contact details for the Nottingham and Papworth clinics you can contact them directly.
If you have concerns about your child’s health
We have received a message from the British Association of Childhood Disability, forwarded to us by the team at Nottingham. It says that many paediatricians are concerned that children are presenting late to paediatric emergency departments due to worries about exposure to Covid-19 or not wanting to be a drain on NHS resources. There is a risk that delays may be dangerous for the child and also increase the demand for critical care.
They have asked us to underline that paediatric emergency departments are safe and functioning well. If parents have serious concerns about their child’s health they should contact their GP and not be afraid to use the paediatric emergency department when it is required.
It is particularly important where children have long term or recurrent respiratory problems and difficulties with chest clearance to make sure you know who to call in the event of a deterioration when admission to hospital might be advisable. If you have any concerns about this, please do contact us on 01582 760733.
This page provides the latest information and advice that we have. However, we cannot cover every aspect of the condition and as we have said there is a lot that is not yet known.
So our last piece of advice is to read what you can and then use your common sense. The AT Society will be here right through the emergency to talk to, to give information and guidance and, where we can, practical support. If you do have further questions or want to talk anything through, please contact us.