Urgent statement- PID UK response to community concerns on late breaking COVID data

Background

PID UK is aware that a recent Webinar on COVID-19 by the professional society UKPIN has caused alarm in the PID community. The webinar was preliminary data presented to medical professionals and has not been through any rigorous process of assessment for statistical or clinical validity. It has been presented as a work in progress and not a definitive source of information. Nonetheless we are aware that figures pertaining to risk of serious outcomes of COVID-19 in PID patients, including fatality, are now out there in the community and are causing real concern.

Outcomes from COVID-19 infection on large general populations are based on the estimated prevalence in the community by either PCR testing of representative groups or by antibody testing.  Antibody testing will not be of value in CVID patients.  Blind PCR surveillance including significant patient numbers in this population has not been undertaken. 

Analysis of the data and what we know

UKPIN have collected data from immunology centres reporting PID or SID patients that they believe have had COVID-19.  This is largely based on patients who have presented with symptoms to an acute care setting and then been admitted into hospital.  Community based testing for patients to date has been almost non-existent.  No worthwhile data has been collected on patients who have had COVID symptoms at home and no home testing has occurred. Please read the lay summary below.

Before we consider PID patients, what is the general rate of COVID-19 infection in the community and what happens to those individuals?  The current cumulative prevalence (all infected cases to date) is about 9% for the general population and 17% for London.  80% of those who have COVID-19 infection stay at home either with or without symptoms for the duration of their illness.  Of the 20% who attend and the smaller percentage still that are admitted into hospital, up to 30% may die of COVID-19 or its complications.  When we scale that back to the whole community, overall mortality is estimated at 1.4% - 3% of infected cases in most European countries. The key point here is that infection severe enough to require admission into hospital is a poor prognostic factor.  The main features associated with getting to the point of being admitted into hospital are older age, male sex, obesity, diabetes and long-standing high blood pressure or heart disease.

Individuals from BAME communities are also thought to be at increased risk. Most of these common risk factors are prevalent in the PID and SID community.

In the UKPIN survey data there were 78 patients across the spectrum of primary and secondary immunodeficiency recorded as definite or probable COVID-19. That represents about 1.5% of the patients in the national registry of PID patients.

Of those 78 patients with PID and SID, 68% were confirmed positive by PCR testing. There were 53 PID patients and of those 21 CVID patients.  Of the CVID patients, 14 were PCR confirmed cases. There were sadly fatalities in the CVID patients, but many of these will have had the common underlying risk factors, in addition to their immune deficiency, that might explain a poor outcome from COVID-19 infection.

It is important to stress that 14 CVID patients is significantly less than 1% of all known CVID cases in the UK. We would suggest that such a low case rate means that either CVID patients are better at COVID avoidance than the general population, or, we have not captured anywhere near the prevalent cases in the PID community with people managing infection at home.  Both of these are likely to be true.

In the UKPIN study the mortality rate observed in CVID patients admitted into hospital is almost exactly the same rate as that observed in the general population admitted into hospital.  Based on a very small sample it would appear that despite underlying immune dysfunction, CVID patients are not necessarily at greater risk of a poor outcome from COVID infection.  Nonetheless, our hearts go out to the families of those who have lost a loved one.

Next steps

PID UK is here to support you. We do not want PID patients taking unnecessary, ill-informed risk.  We do not want to play down the importance of COVID-19 and patients and their families protecting themselves.  Equally, we do not want people to live in fear, become unnecessarily upset or worried, based on data that represents a tiny percentage of our community and does not help decision making. We do want good reliable information so that patients and their families can make good, informed choices.

In order to determine how many patients with PID have come into contact with known cases of COVID-19 and/or have had symptoms or a positive swab test, PID UK will set up a patient survey to try to get better quality data from you, the community.  In the long term this is the only way we can give you all data on which to base decisions regards your own risk and make choices on how to protect yourselves going forward.  If as a community we come together to do this it will not be perfect, all data has the potential for bias, but we think this is the right way to try to help.  There will be many of you out there with other good ideas on next steps, share them with us and let’s move forward together.

Keep safe, stay well.

Dr Matthew S Buckland PhD FRCP FRCPAth FHEA
Consultant and Honorary Associate Professor in Immunology
Chair of the PID UK Medical Panel

Lay summary

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.
Posted 12th June 2020