Is it time to hit the pubs, give hugs and bin masks? Five experts answer.
After a year of lockdown, it looks like ‘normality’ is returning thanks to the rollout of the COVID-19 vaccine.
For an overwhelming percentage of the population, this is hugely reassuring. And for those people with multiple sclerosis (MS) – doubly so.
We know our disease makes us more susceptible to infections. Research has also shown people with advanced MS with underlying health conditions are at greater risk of being hospitalised or worse – if they get the coronavirus.
But for people on certain drugs – like B-cell depleters Ocrevus (ocrelizumab), Rituxin (rituximab) and Kesimpta (ofatumumab) and S1P modulators like Gilenya (fingolimod), Mayzent (siponimod), Zeposia (ozanimod), Ponvory (ponesimod) it’s not quite time to celebrate.
That’s because people on these disease modifying therapies (DMTs) might have a reduced response to the vaccine. This could happen because vaccines work by triggering an immune response and DMTs work by dampening down the immune system, according to the MS Society.
So what does this mean for the more than half a million people globally on these drugs (me included)?* How will we know if the vaccine has given us some – if any – protection against the virus?
And no, getting an antibody test is not the answer, says Gavin Giovannoni, Professor of Neurology, Queen Mary University, London. Most diagnostic COVID-19 antibody tests don’t detect antibodies to the spike protein used in the current vaccines and they don’t measure protective T-cells – another key part of the immune system.
Now what? Are we condemned to watch from afar as friends and family embrace their new post-lockdown lives: hugging (remember that?), squeezing into crowded restaurants and pubs or jetting off to faraway places?
Not quite, agree MS neurologists. “Don’t assume you are completely unprotected after vaccination,” says Erin Longbrake, Assistant Professor of Neurology at Yale University. “Some early data suggests the T-cells are working just fine and are creating protection from the virus. Giovannoni adds that people on these DMTs – post-vaccine – will have less chance of getting severe COVID-19.
Both point out a number of studies are being carried out exploring how effective certain vaccines are at protecting people on a range of MS drug therapies. Later in the year, the results should start trickling in.
But what about while we wait? How do we stay safe while negotiating life in an increasingly vaccinated society? And what other people with MS – on DMTs or not? What can and can’t they do?
In hopes of guidance, I asked five neurologists from countries at various stages of vaccination – from Israel (63% – received at least one dose), UK (53%), United States (46%) to Canada (41%) – for their advice.
The overall message: be cautious, follow your area’s guidance for protection and make sure those around you get vaccinated especially if you are vulnerable.
As for hugs: be selective and make sure “it’s the more formal English-style,” says Klaus Schmierer, Professor of Neurology, Blizard Institute, Queen Mary University, London. “And no snogging!”
Some answers have been edited.
Do you tell your MS patients to get a COVID-19 vaccine – even if they are on immuno-suppressant DMT’s?
Yes, I encourage them to get the vaccine and tell them it is safe and effective. If they are on immunosuppressant DMTs, I tell them the vaccine timing may have to be modified, but this is not a safety issue but something to optimise vaccine efficacy – Ron Milo, Chairman, Department of Neurology, Barzilai Medical Center, Ashkelon and the Ben-Gurion University of the Negev, Israel
Yes – Rachel Farrell, Consultant Neurologist, Queen Square, London
Yes – Klaus Schmierer, Professor of Neurology, Blizard Institute, Queen Mary University, London
Yes, we do. Our general philosophy is that some DMTs may decrease the immune response, but a decreased response is still better than no response! – Jiwon Oh, clinical neurologist, Medical Director of the Barlo MS Program at St Michael’s Hospital, University of Toronto
Yes – Erin Longbrake, Assistant Professor of Neurology at Yale University
What advice would you give to your unvaccinated MS patients? Should they still wear masks in public places, wash their hands and continue to social distance?
I explore with them the reasons they are unvaccinated as by now everyone with MS in the UK should have been offered a vaccine. If vaccine hesitant rather than anti-vax, I discuss with them that while they may not be at high risk of COVID-19, they can still transmit it and high levels of transmission in a community leads to new variants – Farrell
Get vaccinated! We should all continue to adhere to the rules for the time being since transmission remains a possibility, even if the individual is protected from disease – Schmierer
Unvaccinated patients should continue to follow these restrictions – Longbrake
In general, we advise patients to follow general public health precautions in their regions – Oh
We still recommend to continue the usual protection measures (masks, social distancing, hygiene), especially in close spaces and particularly if they are unvaccinated – Milo
What about going back to work, or the gym/cinema?
In general, we advise patients to follow all public health precautions in their regions specific to these populations. There really isn’t a one-size-fits-all recommendation as the risk of COVID-19 is different in different regions. For patients on certain DMTs that may have greater risk, we advise they may want to be more cautious – Oh
Unvaccinated patients should continue to use caution in public settings. I’d recommend continued masking – Longbrake
With social activities, people need to make these decisions themselves as to what their individual risk and the Covid-19 safe measures at the facility. Work is a different matter and needs to be negotiated with the employer taking into account various risks. If a person can reasonably do their work remotely and is at high risk than continuing to work from home is a reasonable request – Farrell
I do recommend my patients during the current (much better) situation in Israel to go back to work, gym… normal life, while still practicing the recommended precautions. I believe 70-75% of the population being vaccinated – “Herd immunity” – may provide significant protection for unvaccinated people – Milo
Going back to work will be a very individual decision, depending on the cumulative risk based on circumstances. Individual and environmental factors all play into this – Schmierer
What about those with MS who have been fully vaccinated? Can they return to the office, gym/cinema? Are they safe to go into restaurants, pubs, bars – where they take off their masks off to eat/drink?
They certainly should be safer, both as individuals and for others. However, there is still uncertainty around transmission and the effect of DMT (B-cell depleters and fingolimod) on efficacy of immunisation – calls for ongoing caution – Schmierer
I think they can cautiously return to daily activities. Vaccinated patients can begin to ease up, particularly when outdoors or within a group consisting solely of vaccinated individuals. Their level of comfort may depend on what MS medication they are on – Longbrake
Vaccination is not 100% and thus care needs to be taken. Know who you are sitting with in restaurants when in close contact and without masks to help make that decision. Ventilation is key – ask for a table by a window and when warmer – opt for outdoor dining – Farrell
Again, it really depends on how public health recommendations evolve based on region, etc. With certain DMTs, there may be a decreased immune response, so it may be important to be a bit more cautious – Oh
Basically yes. Vaccinated people may still infect others (albeit to a probably lesser degree than unvaccinated ones), and should try to avoid close contact with unvaccinated people in order to protect them – Milo
Your patients on immunosuppressant treatments like Ocrevus – what advice would you give them?
I’m advising my patients on B-cell depletion drugs to consider themselves as having some, but possibly not full, protection from COVID-19 and behave accordingly. I’m not advising routine re-vaccination (unless as part of a research trial) at this point, although that might change as new data becomes available – Longbrake
Get vaccinated and continue general safety measures until we know more about their efficacy of their response to vaccination – Schmierer
They need to observe social distancing, masks and hand washing per guidelines. Their response to vaccine might be attenuated and more data is required to comment on this and the need for boosters – Farrell
I also tell these patients that they may need a third booster vaccine in the future, if further studies indicate so – Milo
With these DMTs, it is very possible that the immune response to the COVID vaccine is decreased – we just don’t know by how much, and what this means from a functional standpoint. As such, we recommend patients get vaccinated, but suggest they may want to be a bit more cautious as our knowledge evolves around COVID-19, and as we continue to learn to manage its risk – Oh
*In 2019, Novartis, the makers of Gilenya, said the drug has been used by more than 275,000 patients worldwide. Last month Roche announced over 200,000 MS patients have been treated with Ocrevus globally.
Rachel Horne is a journalist with MS. @RachelHorne19