Five reasons why asthmatics are still worried about Covid

In March 2020 in the UK, people with underlying health conditions including asthma were told they were clinically vulnerable to Covid and should therefore take extra measures to avoid it. Eleven months later, the majority of asthmatics learned that they would not be included in vaccine priority groups. Those under 50 now have to wait until the summer, unless they either met very strict criteria based on hospital admission or use of oral steroids, or, it later transpired, if they got lucky in a postcode lottery with some GPs/CCGs taking a more inclusive approach than others.

We were told this was because “new evidence” was “reassuring” regarding the risk of Covid for people with asthma. So why have we not all welcomed that good news? Here are some of the reasons: from the most logical to the more emotional, but all, I hope, understandable.

1) Questioning the statistics

The evidence being cited by the JCVI is based on the OpenSafely data set: a paper and the QCovid algorithm showed that Covid deaths among most asthmatics are broadly similar to the level of asthma in the population. However, this is in comparison to total numbers in the population, not to numbers who were actually infected with the virus (limited testing in the first wave, and asymptomatic infections throughout, mean such infection numbers are not available). So asthmatics who heeded warnings of a nasty respiratory virus early, and have spent the last year taking every possible precaution, argue that the reason they have not featured disproportionately in the death figures is down to their extra efforts to avoid infection; and the fact that mortality rates are similar and not far lower suggests that their clinical risk is in fact higher. Indeed, the QCovid authors themselves warn that it calculates risk of “catching covid-19 and then having a severe outcome,” and not risk of “death if infected” , with an accompanying editorial in the British Medical Journal saying “A “low risk” prediction generated by the model might reflect active steps taken by similar people in the past to lower their risk, such as shielding. Therefore, using a low risk prediction to support a decision to return to work, for example, is problematic.”

Another sticking point is the definition of “severe asthma”. Multiple studies show that only “severe asthma” is associated with higher risk, and UK government sources state that “severe asthma” is included in the vaccine priority groups. But many are falling through dangerous gaps between the very narrow definition of ‘severe’ agreed by JCVI, and those definitions used in the various published studies. For example, those taking three or more medications including inhaled but not tablet steroids; or those with one or more recent courses of oral steroids but not necessarily the 3 required for vaccine priority; or those whose history of asthma attacks doesn’t quite fit the specified time frames. Conversely, calculated risk levels for “non-severe” asthma may be lowered by the inclusion of the very mildest cases, meaning that the risk for moderate-to-severe asthma is not necessarily so low.

So while there is some reassurance that asthma is not the overwhelming Covid risk factor, nor Covid the near-certain death sentence for asthmatics, that we first feared, the data are noisy and the signals still mixed, so it is not unreasonable for asthmatics- especially those whose condition is more severe whilst still missing JCVI’s chosen cut-off points- to suggest a more precautionary approach should have been taken in deciding how many people would need to be vaccinated before lockdown could be lifted.

2) Not just life or death

The balance of evidence shifts further towards increased risks for more asthmatics when considering bad outcomes other than death, including severe illness requiring hospital admission and critical care, and long Covid. For example, a recent paper shows three times the risk of hospitalisation, and a further 20% increase in critical care among those hospitalised, across asthmatics as a whole.

It has also been clear for some time, though often not given the media attention it deserves, that not all who survive Covid make a full recovery, at least for many months. Long Covid refers to persistent symptoms including extreme fatigue, breathlessness, brain fog and more. Risk factors so far identified include being female, aged 35–50 (so not in phase 1 based on age), and asthmatic. We’ve also heard from asthmatics who have had Covid, and their condition has gone from mild and controlled, to uncontrolled and debilitating. So far this is anecdotal; the data will likely follow in the coming months or years, but that will be too late for the decision of whether we need protection right now from an incoming third wave.

We are used to managing our condition: taking preventative medication, avoiding triggers: and many of us already know that respiratory viruses can be a trigger, during infection and often for some time afterwards. To see the threat posed by this virus and yet be denied access to a preventative measure is exasperating.

3) Loss of trust

We have spent the last year being listed as clinically vulnerable. Every time the news reported that the only younger people who died from Covid that day had “underlying conditions”, our healthy friends were able to listen and think “Well, I’d be fine, then,” while every time we were left thinking, “That could be us.”

Now they’re saying perhaps our particular underlying condition is not the highest risk; but now we’ve seen behind the curtain- how easily our lives or deaths could be dismissed- we can’t unsee it. We can’t forget our experience of the last year and suddenly believe that this government value our lives enough that they wouldn’t risk our lives unless they were sure the risks were minimal.

This was not helped by the timing of the announcement. Whilst the Green Book chapter had been quietly released in November 2020, the final announcement of the exact criteria for asthmatics came in February 2021, when concerns were being raised about vaccine supply for second doses, and when the first plans for reopening were being leaked. Having seen how disposable the lives of people with ‘underlying conditions’ were in the eyes of the government, it is hardly straying into the realms of conspiracy theory to suspect they would also drop groups from the vaccine priority list in order to cut numbers and meet targets, especially since asthmatics are a very large group.

Our trust was certainly not restored when a question regarding the exclusion of most asthmatics from group 6 received a misleading answer from the Prime Minister himself: appearing to claim that asthmatics were in fact included in priority groups, but slipping in one strategic mention of the word ‘severe’.

4) Experience of respiratory distress

When a healthy person hears that Covid causes shortness of breath, what do they imagine? Feeling out of breath after running? A completely hypothetical notion with no point of reference?

We’ve all heard from Covid patients who, after the terrifying experience of fighting for breath, are desperate to warn others to take the disease more seriously. Asthmatics don’t need such a revelation: we have experienced the breathlessness, the fear, the knowledge that our body is doing something beyond our control or willpower, every time we’ve had an attack.

So if the difference in risk between someone with asthma and without is smaller than first thought, we don’t believe that this means we should be less worried; but rather, it means too many other people are less concerned than they should be. Indeed, at almost every turn in the UK’s handling of the pandemic, those who sounded warnings have been vindicated, while those who underestimated the virus in favour of optimistic spin have been proven terribly, tragically wrong.

5) Betrayal / Wasted effort

For all the reasons above, we have been worried about Covid from the start, and taking precautions above and beyond our healthy peers. We refused to take advantage of relaxed restrictions: we didn’t join friends or family in restaurants or in their homes; we continued to shop online as physical shops reopened and supermarket queues subsided; we stuck to outdoor meetings AND two metre distancing AND masks. For a year we took on the extra burden of extra precautions as well as extra worry, because we were told we were clinically vulnerable, and it was not worth the risk to our health. The one upside was the hope of a vaccine, and knowing that our risk would move us up the queue.

We were told going into the January lockdown that the deal was, the public stuck to the lockdown, and the government/NHS would deliver the vaccine. Well, we thought the deal for higher risk groups was, we’d lived with the extra fear and taken the extra precautions, but now we would get the vaccine before society reopened again. We understand that this doesn’t entitle us to be vaccinated ahead of groups later found to be at even higher risk, but it should at the very least entitle us to sympathetic treatment and a thorough explanation, rather than the often curt responses amounting to shut up, go away and wait your turn.

Now we’re facing the risk of a third wave, without the protection of a vaccine, and potentially without the option of our previous precautions such as working from home, as all social distancing measures are lifted and anyone still unvaccinated is assumed to be at low risk. Have we come this far only to be forced to catch the virus anyway? Will a year of extra-stringent social distancing then be followed by a year struggling with long Covid? Would we have been better off taking those risks last summer, to get the first 6 months of long Covid out of the way during the winter lockdowns?

We already spent last summer staying in isolation as healthy peers enjoyed more freedom. Now, as they look forward to each easing of restrictions once again, we instead fear the rise in infections that they will bring, and the growing isolation as everyone else moves back from Zoom to physically meeting, including those who were also vulnerable last year but who are now vaccinated.

So will this decision result in a wave of hospitalised asthmatics as society reopens? We have to hope not, as enough have been vaccinated one way or another (through meeting the group 6 criteria and being able to prove it, or through the postcode lottery, or a reserve list, or another condition or caring role), and the rest of us will continue to be as careful as we can be for as long as we must. But for those in the youngest age groups, and especially those with front-line jobs or children in school, four long, anxious months lie ahead.

Scientist. Asthmatic.