Boris Johnson has promised England a “Freedom Day” on July 19th. For those classed as “clinically vulnerable” or “clinically extremely vulnerable”, however, the lifting of remaining coronavirus restrictions is set to be anything but. In fact, the risk of undertaking normal daily activities will likely increase to the extent that more people will start shielding again if they are able to do so, despite shielding being officially paused.
Vicky Foxcroft, the Labour MP for Lewisham Deptford and shadow minister for disabled people, has highlighted in particular the concerns of the immunocompromised and immunosuppressed, who have been given little guidance or information on Covid-19 vaccine efficacy. With both Foxcroft and I forming part of the immunosuppressed population, I spoke to her about what comes next and what changes are needed.
“On a personal level, I’ll still be taking a lot of precautions. I’ll be using a mask when I’m on public transport. I have been doing stuff like writing to the rail companies to ask them to keep the masks in place,” she tells me. “I’ve literally had hundreds – and I’m not over-exaggerating when I say that – of emails from people who are really, really worried about the removal of all restrictions in that way, particularly the immunocompromised population, because we just don’t know how much the vaccine works on them. That’s obviously a real concern. They’ve spent about a year and a half on-and-off shielding, and then all of a sudden, it’s like, ‘good luck!’.”
Those with weakened immune systems either have a condition that reduces their ability to fight infections and other diseases, or they take immunosuppressive drugs to control the symptoms of an autoimmune disease, to treat cancer or to prevent transplant rejection. Foxcroft is in the immunosuppressed group: she takes methotrexate for the rheumatoid arthritis that she was diagnosed with just a couple of years ago.
Key to alleviating the anxieties of the immunocompromised, or at least providing them with information, may be the Octave study, which is looking at immune response to Covid-19 vaccinations in these patient groups. When Foxcroft recently asked new Health Secretary Sajid Javid about when the release of its findings could be expected, he replied: “On the study to which the hon. Lady referred, I will look into that and write to her, if she will allow me.”
Javid appeared to give the impression that he didn’t know about the study; at the very least, he had no update at all on its progress. “So we’re doing all of this removing of restrictions, but you’ve not analysed our population, deemed to be at risk of severe illness and death if they get it?” a deeply frustrated Foxcroft remarks. “It’s a study that the government is giving money towards, and he should have known that. To be removing all of these restrictions and not know about the one detailed study on the efficacy of the vaccine on immunocompromised people… I was a bit worried, and after that question, I was quite a lot more worried.”
As well as the results of the Octave study, which she is hopeful will start to be published “within the next few weeks”, the shadow minister has been pushing for antibody tests to give immunocompromised people some idea of their immune response to the vaccine. So far, this proposal has been dismissed by ministers. “It’s been said to me, ‘Oh, we don’t want to give people false hope, or false fears’. But we’re allowing everybody else to make informed decisions over what they do,” Foxcroft protests.
“They say stuff around ‘you could have antibodies but not be protected’ or ‘you might not have antibodies, but have a level of protection’. I just think, treat us like we’re adults. Let us have that and let us make informed decisions. Everybody else has been given the information to be able to make informed decisions. What is the harm in allowing us that extra amount of information to decide what we’re going to do?”
The medical guidance given to immunosuppressed people when getting the vaccine has been varied. Some have been told where possible to reduce or stop taking their medication to create a stronger immune response, while others haven’t. It has been common for those soon starting treatment to delay it until two weeks after their second jab, while some of those on very high doses haven’t been able to have a vaccine at all. Everyone has learnt to balance risks during the pandemic, but this is especially necessary – and more dangerous – for the immunosuppressed.
Explaining how she has approached it, Foxcroft says: “I’ve been begging my doctors to reduce my methotrexate. Now we’ve reduced it by a bit, and I need to cautiously wait and see whether or not it’s okay. I have to admit that when I feel a little ache somewhere, I’m ignoring it, because I want to reduce my immunosuppressants. I think there’s a lot of people out there who will be feeling very, very similar.”
The joint committee on vaccination and immunisation (JCVI) has advised that a third ‘booster’ dose should be offered to the shielding population as soon as possible from September. “I think there is an argument for bringing them forward a bit,” Foxcroft says, “but they definitely need to make sure that that’s rolled out quite quickly, because there are big worries as infections are rising”. She does note, though, that this comes back to the Octave study and antibody tests, as the immunocompromised need to know the efficacy of any of these jabs.
Throughout the pandemic, the Labour frontbencher has been “faced with the dilemma of whether to put my health or my constituents first”, as she put it in a written statement to parliament when Jacob Rees-Mogg decided to end virtual arrangements in the House of Commons. From September, after summer recess, the hybrid system will be scrapped again. “Why couldn’t we keep them in place going forward? If the House of Lords is doing it, why can’t the House of Commons do it?” she says.
The Lords – which has had online voting throughout Covid – has been more “forward-moving” than the Commons, somewhat ironically. The government has been insistent that “constituents are best served” when MPs are present physically in the chamber. Never mind that this means parliament being a Covid hotspot and MPs unable to contribute. “There is some stuff lost in parliament in terms of interventions or interruptions and the back-and-forth of debate, but you can use it in certain areas and still make sure that MPs are able to raise issues on behalf of their constituents,” Foxcroft says.
The attitude towards the immunocompromised is just one way in which the government has failed disabled people. Its disability strategy has been repeatedly delayed and the public survey prompted outrage, being inaccessible, incorrectly designed and asking whether respondents would “be happy to have a physical relationship with a disabled person”.
“It’s pretty disgusting,” Foxcroft tells me. “I did do a written parliamentary question about [that question], to ask why. They said, ‘Oh, this was developed in consultation with disabled people’. Now, I’ve been doing virtual roadshows across the country, and I meet with disabled people, disabled people’s organisations, all the time. I cannot find a disabled person who has wanted that question in there. This is supposed to be a strategy working with disabled people to make their lives better, and even the process of doing that just made their lives feel worse and worth less.”
She has demanded the publication of the strategy nonetheless, and is “picking up rumours” that its release could be imminent – ”just before summer recess”. This conveniently means little parliamentary scrutiny of its contents. “The excuse for it all has been because of the coronavirus pandemic, but with over 60% of [Covid] deaths being of disabled people, we actually needed this far, far sooner.”
The government recently promoted Public Health England data in a tweet claiming the Pfizer and Oxford vaccines are “74% effective after the second dose for people who are immunosuppressed”, rising from just 4% after the first dose. Blood Cancer UK called for a retraction and said the Health Department’s representation of the findings was “misleading”. The 74% figure is very different from findings that have come out of the US, and Foxcroft is concerned that it has not been peer reviewed.
For the estimated 500,000 people who are immunocompromised, July 19th still looks more like ‘Lockdown Day’ than ‘Freedom Day’.