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COVID-19 information for people with MS

Last updated: 09/11/20 (Reviewed daily) 

 

This page contains general advice. We cannot make individual medical recommendations.
If after reading this info you have concerns, please discuss them with your medical team (neuro, GP, etc.), your state/territory MS organisation, or contact the Coronavirus Hotline: 1800 675 398. 

This page is updated as new information becomes available.  It includes advice collated from a number of reputable sources, including an independent group of neurologists from Australia and New Zealand, and another international group led by MSIF. (MSIF's advice can be viewed here:)
 

Changes made to page on 9/11/20:  

  • Addition of Background section
  • Additions made to the What should I do about my medication? section

 

MS global data sharing initiative – how you can help!

As the COVID-19 pandemic unfolds across the globe, the power of collecting, sharing and analysing data from all around the world means we will be able to get faster and more robust insights to help people with MS and their clinicians make evidence-based decisions on how to manage their condition during the pandemic or in case of a COVID-19 infection.  
 
We need your help! 
We are calling on everyone in the Australian MS community to answer a brief survey as part of the Australian MS Longitudinal Study (AMSLS), which is part of the MS global data sharing initiative.  
For more information about how the MS global data sharing initiative works, and how the data is used, please visit:
 
Please complete the survey as soon as possible and share this with anyone you know who lives with MS.

 

Background

Since December 2019 following cases emerging in and around Wuhan, China most regions of the world have now experienced cases of a novel respiratory illness (COVID-19) caused by a new coronavirus which has been identified as SARS-CoV-2. Globally, the mortality of this infection amongst cases displaying symptoms and confirmed to have the virus is in the order of 4%. National and International measures to reduce the risk of transmission of the virus have been implemented in most jurisdictions. As predicted these measures have slowed the rate of transmission, but at this point community spread of the virus continues in most regions of the world. The antiviral drug, Remdesivir, has been shown to shorten the duration of illness in those admitted to hospital. Corticosteroids, hydrocortisone and dexamethasone, have been shown to reduce the mortality risk in patients admitted to the intensive care unit. Phase III clinical trials of several potential vaccines have commenced and if successful, a vaccine could become available before the middle of 2021. However, initial vaccines may only be partially protective and the potential for ongoing community transmission may persist for several years. Older persons and those with pre-existing medical conditions (obesity, hypertension, respiratory disease, heart disease, diabetes, cancer) have a higher risk of complications from COVID-19 infection. Men are also at slightly increased risk. At this stage, there is no evidence that being immunosuppressed increases a person’s risk of being infected with COVID-19 or developing complications, but there is a theoretical risk of both. Preliminary evidence from the use of chemotherapy for the treatment of cancer has so far been reassuring.
 
Worldwide there have now been some 36 million people infected with SARS-CoV-2 and over 1 million have died. The number of daily new cases continues to grow steadily whilst the numbers of deaths have stabilised at 5,000 per day. In Australia, we remain in a containment phase with near eradication being achieved in several states and territories, where the only new cases have occurred in interstate or overseas arrivals and their immediate contacts. At present, the risk of contracting COVID-19 in Australia remains low and in many regions is effectively zero. In total, there have been 27,226 confirmed cases of COVID-19 in Australia with 897 deaths, giving a mortality rate of 3.3% which is slightly below the global average. The latest data indicate that the number of new cases is once again declining following a second wave that principally affected Victoria. Just over 90% of deaths have occurred in Victoria. This suggests that the present transmission prevention efforts have been effective, with some notable exceptions. This has been the result of two main factors. The first is that the population of Australia has largely followed the recommendations of social distancing and personal protection. The second is the outstanding work undertaken by our Public Health team who have successfully traced the source of 80-90% of cases and implemented testing, quarantine and self-isolation as necessary. This has been an amazing achievement and goes largely unnoticed. However, we need to remain vigilant as the situation may still change as was recently shown in Victoria. We will continue to monitor this and change our advice accordingly.
 
Preliminary studies looking at the incidence and impacts of COVID-19 in persons with MS (pwMS) have now been completed. Whilst further data collection and analysis is ongoing, what is clear at the present time is:
1. The risk of a pwMS contracting COVID-19 appears to be no higher than the risk for the general population. If anything the risk is slightly lower. It has been speculated that this could be due to either stricter adherence to social distancing measures for those who consider themselves at risk or a protective effect of MS therapies (see below).
2. The overall risk of developing complications of COVID-19 (requirement for ventilation or intensive care treatment, and death) are no greater for a pwMS than the general population.
3. The same risk factors for a worse outcome from COVID-19 seen in the general population (age >60 years, male gender, comorbid conditions [diabetes, hypertension, obesity, cardiovascular disease, chronic respiratory disease and cancer]) have been confirmed in pwMS.
4. The COVID-19 pandemic has affected the behaviour of pwMS. In one study, 40% of pwMS had postponed clinical appointments, laboratory tests and MRI scans. Treatment alterations were made in 14% and worryingly in 65% this decision had been self-determined and was not at the advice of their neurologist.
5. Collectively, treatments for MS have not been associated with an increased risk of contracting COVID-19, developing complications of COVID-19 or death from COVID-19. Again, if anything the data points to a slight protective effect of MS therapies. As indicated above, the reduced risk of infection may relate to changed social distancing behaviour in those on therapy, but the reduction in complications and mortality suggests a beneficial effect on disease severity from these immunological agents,
 
One exception to the above is in relation to anti-CD20 therapies (ocrelizumab and rituximab). The evidence in relation to the risk of contracting any COVID-19 infection on these therapies is indeterminate with several studies showing no increased risk (and possibly reduced risk) over population expectations, but one large study showing an increased risk. However, the main determinant of contracting any infection is whether one is exposed to the virus, with only the secondary issues of whether, if exposed, it gets in and becomes a symptomatic infection likely to be altered by MS treatments. Several studies have now all shown a consistent effect of anti-CD20 therapies increasing the risk of serious infection (hospitalisation and/or requirement for ICU care) in pwMS. The risk of death shows a similar trend, but is not statistically significant, even when studies were combined. The larger studies looking at this did adjust for age, gender, disease course and MS disease severity and the association with worse outcomes from COVID-19 persisted for anti-CD20 therapies. However, it should be noted that the risk associated with anti-CD20 therapies was small compared to the established risk factors of age and comorbid disease.
 

 

All people with MS are advised to follow guidelines for reducing the risk of infection with COVID-19. 

 

General advice & FAQs:

How can I protect myself from getting COVID-19?

The World Health Organization recommendations include:

  • Wash your hands frequently with soap and water or an alcohol-based hand rub

  • Avoid touching your eyes, nose and mouth unless your hands are clean

  • Try to practice social distancing by keeping at least 1 metre distance between yourself and others, particularly those who are coughing and sneezing

  • Avoid going to crowded places

  • When coughing and/or sneezing, cover your mouth and nose with a flexed elbow or tissue

  • Practise food safety by using different chopping boards for raw meat and cooked foods and wash your hands between handling them.

In addition, we recommend that people with MS should:

  • Wear a face mask in public and ensure that you are using it correctly by following these instructions

  • Avoid public gatherings and crowds

  • Avoid using public transport where possible

  • Where possible, use alternatives to face-to-face routine medical appointments (for example, telephone appointments).

Certain groups of people with MS may be at an increased risk of becoming severely ill or dying with
COVID-19. The following groups should take extra care to minimise their exposure to the virus:
  • People with progressive MS
  • People with MS over the age of 60
  • People with higher levels of disability (for example, an EDSS score of 6 or above)
  • People with diseases of the heart or lungs 

Caregivers and family members who live with, or regularly visit, a person with MS on one of these groups should also follow these recommendations to reduce the chance of bringing COVID-19 infection into the home.

National lockdown measures in place in many parts of the world might be relaxed in the coming weeks and months. Until our understanding of the coronavirus improves, people with MS in these higher risk groups and their caregivers should continue to follow the advice above to reduce their risk of contracting COVID-19.  

In order to minimise the risk of being infected by COVID-19, you should follow the standard precautions  advised by the Australian Government. This is the best source of advice on how to keep yourself safe and will be updated daily. You can also stay informed by downloading the official government “Coronavirus Australia” app in the Apple App Store or Google Play, or joining their WhatsApp channel on iOS or Android.

 


What if I develop symptoms of COVID-19 infection or have a confirmed diagnosis of COVID-19 infection?

If you develop symptoms of COVID-19 infection or have a confirmed diagnosis of COVID-19 infection you should:

  • Follow the standard self-isolation advice.

  • Follow the advice of the diagnosing doctor or health care facility.

  • Seek the advice of your neurologist or ask the diagnosing health care team to discuss with them or the on-call neurologist, regarding any changes to your treatment.

  • It is extremely important that you advise your neurologist if you become infected with COVID-19 as we will be collectively monitoring the outcomes for people with MS and various therapies. This will assist in providing appropriate advice to all.
 

Who should I contact if I have symptoms of COVID-19 infection?

If you are concerned that you are developing symptoms of COVID-19 you can:

  • Phone the Coronavirus Health Information Line 1800 020 080

  • Phone the Health Direct Hotline 1800 022 222.

  • Phone your General Practitioner for an appointment (please phone ahead to make an appointment).

  • Attend a coronavirus testing centre (these are listed for each state by the relevant health department, again please phone ahead to make an appointment).

 

Should I come to my outpatient clinic, infusion, bloodtest or MRI appointment?

If you have visited a high-risk area, have symptoms of COVID-19 infection or have had close contact with someone who has been diagnosed with COVID-19 please do not attend your outpatient, infusion, blood test or MRI appointment. Please contact your specialist clinic, MRI department, infusion centre or MS Nurse to advise of your need to cancel the appointment and make alternative arrangements. Most neurology clinics have now moved to telephone or telehealth consultations.
 
It is important to remember that MRI scans and blood test form an important part of the monitoring of your disease activity and potential side effects of medication. In some instances, there may be adverse consequences of delaying or cancelling these investigations. Please contact your neurologist before making any changes to your planned investigations. MRI departments in hospitals and private radiology practices have implemented measures to limit the risk of infection.
 
Some private pathology services offer a home collection service. Please contact your pathology service for details. This may require the approval of your neurologist.
 

Should I travel overseas?

Current travel advice is available on the Australian Smart Traveller website, but essentially all travel is currently severly restricted.

 

Should I have the flu and pneumonia vaccinations?

It is recommended that all persons with MS and related disorders have the flu vaccination. The Pneumococcal vaccination is also recommended.

 

What if I am a healthcare worker?

At present we have no evidence of an increased risk of COVID-19 infection or its complications in pwMS or related conditions, even in those on treatment. However, as indicated below there are potential, theoretical risks with some medications and it would be sensible for healthcare workers on any of these therapies to avoid work environments that would bring them into direct contact with people either known to be or likely to be infected with COVID-19. If you require any documentation to this effect, please contact your neurologist who will be happy to assist.
 

Advice for children or pregnant women with MS:

At this time there is no specific advice for women with MS who are pregnant. There is general information on COVID-19 and pregnancy on the US Centre for Disease Control and Prevention website.

There is no specific advice for children with MS; they should follow the advice above for people with MS.


Advice for looking after your mental health during the coronavirus outbreak:

The Federal Governement's Head to Health website can help you find the right digital health resources for your needs. This includes resources on how to support children and others.: https://headtohealth.gov.au/

Beyond Blue also have a page dedicated to looking after your mental health during this time: https://www.beyondblue.org.au/the-facts/looking-after-your-mental-health-during-the-coronavirus-outbreak


Advice regarding the NDIS:

NDIS and Disaster Response: https://www.ndis.gov.au/understanding/ndis-and-other-government-services/ndis-and-disaster-response

New measures are being put in place in response to the COVID-19 pandemic. Here is a link to the statement from the Minister: https://bit.ly/2WD8nGI


Telehealth:

The Australian Government is expanding Medicare-subsidised telehealth services for all Australians and providing extra incentives to general practitioners and other health practitioners. 

Read joint media release by Hon Greg Hunt MP, Minister for Health and Professor Michael Kidd AM, Principle Medical Advisor: https://bit.ly/2QXk1bX
 
Read ABC's 30/03/20 news story explaining Telehealth: https://ab.co/3460z29
 

COVIDSafe app:

The COVIDSafe app is part of the Federal Government's efforts to slow the spread of COVID-19. The app helps find close contacts of COVID-19 cases, and helps state and territory health officials to quickly contact people who may have been exposed to COVID-19. It is completely voluntary. 
 

Read MS Australia Board's full statement in support of COVIDSafe App here: https://www.msaustralia.org.au/news-blogs/latest-news/ms-australia-boards-statement-support-covidsafe-app
 

Medicines and Treatments:

Medicines Australia assures supply of medicines:

Medicines manufacturers are committed to ensuring supply of the medicines that Australians need when they need them.  There are adequate medicines supply in Australia to meet community needs, please do not stock pile.  Medicines Australia is assisting the Department of Health to identify any potential issues relating to supply of essential medicines and to ensure measures are in place to mitigate any shortages or impacts relating to supply concerns if they arise.  (read full statement here)
 

Electronic prescriptions:

This fact sheet outlines how you can get your medicine if you are confined to home due to coronavirus (COVID-19). Changes to electronic prescribing are underway, but you can already have a telehealth consultation with your doctor and get medicines sent directly to you at home.
 

The Home Medicines Service:

Home Medicines Service will enable vulnerable people and people in self-isolation to order their PBS and RPBS prescriptions remotely and have their medicines home delivered at no cost to reduce their potential exposure to COVID-19.  Pharmacies will be able to offer customers free monthly delivery of under 500 grams of medication and other essential supplies using the Australia Post Express Post network, and will be able to claim the cost through a government rebate. Contact your local pharmacist and they will be able to advise you on this or visit: https://www.findapharmacy.com.au/home
 

What should I do about my medication?

If you are on a regular medication for MS or a related condition, then it is recommended that you should continue to take this medication because of the very real risk of relapse when medication is ceased.

This is in view of the very low risk of contracting COVID-19 in Australia, the lack of evidence for any increased risk of COVID-19 infection or its complications in pwMS on immunomodulatory therapies, and only a marginal increase in the risk of a more severe course of COVID-19 on rituximab and ocrelizumab. 

With regards to specific therapies:

Self-injected therapies (glatiramer acetate [Copaxone], beta-interferon [Avonex, Betaferon, Plegridy, Rebif])

  • These medications are not immunosuppressive.

  • You should continue these medications and follow the standard advice regarding prevention of COVID-19 infection.

Intermittent immunotherapies (plasma exchange, intravenous gammaglobulin [IVIg]):

  • These therapies have a minimal impact on immune function.

  • You should continue these therapies and follow the standard advice regarding prevention of COVID-19 infection.

Regular potentially immunosuppressive MS therapies (natalizumab [Tysabri], fingolimod [Gilenya], siponimod [Mayzent], dimethyl fumarate [Tecfidera], teriflunomide [Aubagio]):

  • These therapies are mildly immunosuppressive, there is currently no evidence that they increase the risk of COVID-19 infection. Specifically, studies of natalizumab, dimethyl fumarate and teriflunomide have not shown any cause for concern.

  • Because of the very real risk of relapse on discontinuing these therapies compared to the currently low risk of COVID-19 infection, the present advice is that these medications should be continued.

  • Your neurologist may wish to monitor your immune cell counts more frequently.

  • You should follow the standard advice regarding prevention of COVID-19 infection.

Immunosuppressive therapies (prednisolone, methotrexate [MTX], azathioprine [Imuran], mycophenolate mofetil [Cellcept], cyclophosphamide [Cytoxan]):

  • The level of immunosuppression with these medications is variable and depends upon the dosage and combination of treatments.

  • Because of the very real risk of relapse on discontinuing these therapies compared to the currently low risk of COVID-19 infection, the present advice is that these medications should be continued.

  • Your neurologist may wish to monitor your immune cell counts more frequently.

  • You should follow the standard advice regarding prevention of COVID-19 infection.

Pulsed immunosuppressive therapies (rituximab [Rituxan], ocrelizumab [Ocrevus], alemtuzumab [Lemtrada], cladribine [Mavenclad], autologous haematopoietic stem cell therapy [AHSCT])

  • These therapies are immunosuppressive to varying degrees and for variable periods of time.
  • Because of the pulsed nature of these therapies there are options to delay courses of treatment.

  • Decisions on whether or not to delay a course of these therapies should be discussed with your neurologist.

  • Because of the very low risk of COVID-19 in many states and territories the use of alemtuzumab has resumed sometimes with additional precautions of self-isolation immediately before and after therapy.

  • A study of cladribine has not shown any cause for concern.

  • The risk/benefit profile of rituximab and ocrelizumab in those with additional risk factors for worse outcomes from COVID-19 (age >60 years, male gender, comorbidities, higher levels of disability) needs to be considered carefully on a case-by-case basis.

  • You should follow the standard advice regarding prevention of COVID-19 infection, in some situations, on the advice of your neurologist, it may be appropriate to take additional precautions.

 

Advice regarding aHSCT:

Autologous Haematopoietic Stem Cell Treatment (aHSCT) includes intensive chemotherapy treatment. This severely weakens the immune system for a period of time. People who have recently undergone treatment should extend the period they remain in isolation during the COVID-19 outbreak. People who are due to undergo treatment should consider postponing the procedure in consultation with their healthcare professional.
 

Seeking medical advice for relapses and other health concerns:

People with MS should still seek medical advice if they experience changes in their health that may suggest a relapse or another underlying issue such as an infection. This can be done using alternatives to in-person clinic visits (such as telephone or video consultations) if the option is available. In many cases, it is possible to manage relapses at home. 
 
The use of steroids for treating relapses should be carefully considered and only used for serious relapses. Where possible, the decision should be made by a neurologist experienced in the treatment of MS. People who receive steroid treatment for a relapse should be extra vigilant and may want to consider self-isolation for an appropriate amount of time to reduce their risk from COVID-19. People with MS should continue to participate in rehabilitation activities and stay active as much as possible during the pandemic. This can be done through remote sessions where available or in clinics as long as facilities are taking safety precautions to limit the spread of COVID-19. People with concerns about their mental health should seek advice from their healthcare professional
 

For Australians living with MS concerned about coronavirus, at the outset we recommend that you:

  • Discuss any particular queries or concerns with your GP or neurologist (pertaining to your situation).

  • Prior to your visit, re-read this page, as the MS-specific information may help you formulate your queries.

It is also important to regularly check the following Australian Government websites, for information about COVID-19, including protecting yourself and minimising your risk:

 

Department of Health - Coronavirus (COVID-19):

The World Health Organization website (www.who.int) has general advice for the public regarding precautions, other concerns and handy FAQs.

 

Many of Australia’s major health services offer advice for MS patients about matters such as:

  • Flu and pneumonia vaccinations

  • Attendance at outpatient clinic or infusion appointments

  • MRI and/or regular pathology services

So please visit the website of your nearest health service: https://health.govcms.gov.au/resources/apps-and-tools/healthdirect-find-a-health-service

 

Find an MS Clinic nearest you: 

MS Clinics exist across Australia to provide expertise in the diagnosis and management of multiple sclerosis and many have a range of neurological services available. Most require a referral from your GP.
The list below may help you to find the clinic nearest you. MS Australia will endeavour to keep this list up-to-date through regular reviews. Please contact us by email to info@msaustralia.org.au to alert us to any errors or updates.

 

Disability Information Helpline:

It provides information and referrals for people with disability who need help because of coronavirus (COVID-19). The Helpline can help families, carers, support workers and services, too.

Contact the Disability Information Helpline on 1800 643 787.

The Helpline is available Monday to Friday 8am to 8pm (AEST) and Saturday and Sunday 9am to 7pm (AEST). It’s not available on national public holidays.

 

Management and Operational Plan for People with Disability:

The Plan is designed to support the objectives of the Australian Health Sector Emergency Response Plan.

It aims to minimise COVID-19 and its effects among people with disability; inform people with disability, their families and support workers; support effective care and rehabilitation for people with disability who contract COVID-19; and to support people with disability to continue to have access to non-COVID health care during the pandemic.

https://www.health.gov.au/resources/publications/management-and-operational-plan-for-people-with-disability

 
 

State & Territory MS Organisations:

Given the current situation and the urgent need to reduce social contact, MS organisations around the country have needed to cancel events and activities involving large gatherings, and in some cases alter the way that support and services are provided. 

Please check with your state/territory MS organisation for advice on how this may affect you: 

 

State & Territory Departments of Health pages:

 

Other media articles/sites on COVID-19 and MS:

Some neurologists around the world with MS patients who tested positive to COVID-19 have tweeted about their experiences, and so far they seem encouraging. The tweets include two from Australian neurologist Dr. Anneke Van Der Walt.

Dr. Gavin Giovanni answers FAQs regarding COVID-19 and MS, including some examples of questions sent in from readers.

 

Watch videos:

Wednesday 8 April, 2020: Comedian Tim Ferguson provides his humorous & philosophical take on COVID-19 & MS with DSC:
 
 
Wednesday 8 April, 2020: Neurological physiotherapist Gilly Davy's wellbeing & brain health tips for people living with MS during COVID-19:

 
Tuesday 31 March, 2020: MSL Conversation with Neurologist Assoc. Prof. Anneke van de Walt:

 
Tuesday 31  March, 2020: Shift.MS MS Reporters interview with Aaron Boster MD:
 
 
Thursday 26 March, 2020: Shift.MS MS Reporters interview with Aaron Boster MD:
 
 
Thursday 19 March, 2020: Shift.MS MS Reporters interview with Professor Gavin Giovannoni:
 

Thursday 12 March, 2020: Shift.MS MS Reporters interview with Professor Gavin Giovannoni:
 

Thursday 19 March, 2020: Professor Gavin Giovannoni's 1-hour webinar for Multiple Sclerosis Academy on "Managing MS remotely during the COVID-19 pandemic":

Warning: Dr.G refers to the UK health system, not Australia, so he used acronyms such as DoH (Deparment of Health), NHS (National Health Service) and ABN (Association of British Neurologists), for example, that are not explained.
 
 

Signatories:

Simon Broadley
Bill Carrol
Natasha Gerbis
Deborah Mason
Mike Boggild
Heidi Beadnall
Anneke van der Walt
Jeannette Lechner-Scott
Jane Frith
Suzanne Hodgkinson
Stephen Reddel
Richard Macdonell
Michael Barnett
Mark Marriott
Pamela McCombe
Trevor Kilpatrick
Bruce Taylor
Allan Kermode
Ernie Willoughby
Simon Hawke
Mahtab Ghadiri
Tomas Kalincik
Steve Vucic
Ian Sutton
Todd Hardy
Ann French
Mastura Monif
Helmut Butzkueven
John Parratt
Olga Skabina
Caron Chapman
Patrick Aouad
Judy Spies
Nicholas Crump