Contact tracing
MS: Busting the Myths
(Updated 15th November 2022)
COVID-19 is a virus that can affect your lungs, airways and other organs. It is caused by a novel coronavirus (called SARS-CoV-2) that has spread around the world.
The advice on our website was developed with the support of MS clinicians, research experts and international advice. It is based on the emerging evidence of how COVID-19 affects people with multiple sclerosis (MS) and expert opinion. This advice will be reviewed and updated as further evidence about COVID-19 and SARS-CoV-2 becomes available. The information is specific to an NZ audience so does not cover all the vaccines and DMTs available globally, only what is available in NZ.
Disclaimer: These pages contain information about COVID-19 and how it impacts those with MS in NZ. Information on our website is general information only and should not be taken as individual medical advice. We cannot make individual medical recommendations. If after reading this info you have concerns or questions such as relating to your MS treatment, vaccines and timings, please discuss them with your medical team (Neurologist, MS Nurse GP, etc.). If you are feeling unwell you can contact the Coronavirus Healthline team (for free) on 0800 358 5453 or +64 9 358 5453 for international callers.
For general queries, please contact your Regional MS Society, or the Coronavirus Healthline team (for free) on 0800 358 5453.
You can also read an informative overview from the MS International Federation on vaccines and DMTs here: https://www.msif.org/news/2020/02/10/the-coronavirus-and-ms-what-you-need-to-know/
This Page contains information relevant to people with MS in New Zealand:
Current evidence shows that simply having MS does not make you more likely to develop COVID-19 or to become severely ill or die from the infection than the general population. However, the following groups of people with MS are more susceptible to having a severe case of COVID-19:
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.
With regards to specific therapies:
Vaccines are vital in the ongoing fight against the coronavirus. However, some disease modifying therapies (DMTs) used to treat MS may affect the body’s ability to produce an immune response to COVID-19 vaccines.
Read more here on the MSIF website.
The current data and what we know of the mechanism of actions of Tysabri, Aubagio, Tecfidera, Betaferon, Avonex or Copaxone do not present any indication that the immune response received from the Covid mRNA vaccine will be impacted as they are not immunosuppressive.
Patients on ocrelizumab (Ocrevus) or fingolimod (Gilenya) should be aware that these are immunosuppressives and may affect your body’s ability to generate an immune response. However, it is unknown how much of an immune response is required.
Gilenya works by blocking B and T cells in your lymphnodes which can increase susceptibility to some infections. Global data is not currently showing an increased risk of severity of Covid-19 for those on Gilenya and vaccination is still recommended.
Ocrelizumab depletes the B-cells in your body. However, B-cell memory in your bone marrow should remain unaffected and these will continue to make antibodies to maintain any immunity received prior to beginning treatment. There is a much lower ability to produce new B-cell responses and therefore antibodies following treatment initiation. Therefore, patients who are looking to begin treatment with Ocrelizumab are required to complete their immunizations at least 6 weeks prior to initiation of Ocrelizumab (Medsafe Datasheet: https://www.medsafe.govt.nz/profs/Datasheet/o/Ocrevusinf.pdf).
The optimal time for a vaccination in the interval between two doses of Ocrelizumab is not known and might depend on the individual’s risk of SARS-CoV-2.
Various studies are ongoing in this area with varied results:
As the mRNA vaccine is not “live”, meaning you are not receiving a dose of the virus itself, for those people with MS who are already on Ocrelizumab or Fingolimod, vaccination is still recommended however your body’s ability to generate an optimal immune response will be limited. For Ocrelizumab (but not Fingolimod), while the antibody response will be affected, it is expected theoretically that your body will be able to make T-cells against SARS-CoV-2, which should provide a layer of protection.
Patients who are either on or due to begin treatment with Ocrelizumab are highly recommended to contact their Neurology Team, Nurse or Neurologist, to discuss their immunisation schedule based on their treatment regime. Treatment decisions should be made between a patient and their treating neurologist or other medical professional based on a benefit/risk assessment specific to the individual patient, and vaccines must be given in accordance with the approved label for the vaccine.
Understandably, there is a high level of interest within the Multiple Sclerosis (MS) Community for information about how the Pfizer vaccine works and is impacting people with MS globally. Due to this Multiple Sclerosis New Zealand and the Ministry of Health were pleased to co-host a webinar on Wednesday 2nd June 2021, looking into the common questions being raised.
Our speakers were Professor David Tscharke, a person with MS, an MS Researcher and Head of the Department of Immunology and Infectious Diseases at the John Curtin School of Medical Research, Australian National University. David has helped inform the Multiple Sclerosis International Federation and MS Research Australia on COVID-19 vaccines, as well as providing short courses on vaccines for the Australian Government. David’s talk covered several key questions the MS Community are raising, such as:
Ray Finch from Spectrum Care was seconded to the Ministry of Health, to assist in designing the vaccine rollout plan specifically for the disability community. Ray details the focus that the Ministry took to ensure an inclusive lens was placed over the roll out plan, working to ensure the issues and concerns of the sector are considered as the vaccination programme is implemented. Ray discusses the key information those in Group 2 and 3 need to know around how to access the vaccine and Supported Decision Making Tools.
Q. What Group am I in?
A.
Group 3
The Ministry of Health have confirmed that people diagnosed with Multiple Sclerosis are considered under Group 3 for access to the Pfizer COVID Vaccine (Comirnaty). Roll out of Group 3 has begun in most DHBs but access is dependent on availability.
Eligibility is due to people with MS having a health condition that means you’re eligible for a free publicly-funded flu vaccination: Eligibility criteria | Influenza – Immunisation & Vaccination Info, NSIG New Zealand
For more information see: COVID-19: Vaccine advice for specific groups and health conditions | Ministry of Health NZ
Group 2
Disabled persons living in long-term residential settings/communal care, people with complex care needs who have multiple carers supporting their daily life, or who live in the Counties Manukau DHB area, are considered under Group 2.
Q. Covid Vaccination Helpline now open
A. People in Group 2 and 3 now have 2 ways to book their vaccine if they are still waiting for an appointment:
Those in Group 4 who are 60+ are also now invited to book online via BookMyVaccine.nz. Group 4 is being divided up by age group with those 60+ being given booking priority alongside those in Groups 1-3 who are awaiting their vaccination.
To learn more about the online booking site there’s a handy video: How to use Book My Vaccine – YouTube.
It is expected that those 55+ will be able to book from 11th August.
Q. I have received an invitation to book my vaccine. What do I do?
A. If you have received an invitation to book you are encouraged to use the link in your invitation to book online.
Q. I have not received an invitation to book my vaccine? What do I do?
A. If you are in Group 2 or 3 and have not received an invitation you can make a booking by calling 0800 28 29 26 between 8am and 8pm 7 days a week.
When calling to make a booking the booking team will work hard to find a time that works to meet your needs.
Q. What if I’m not ready to make my booking?
A. If people in Group 2 or 3 don’t book straight away they won’t miss out and will still be able to book when bookings start opening up to Group 4 at the end of July.
Q. What information do I need when calling the 0800 number
A. Booking your vaccination over the phone will take around 15 minutes.
When you call it’s a good idea to have your NHI (National Health Index) number ready to make the booking process quicker, but if you don’t have your NHI number you can still call.
If the COVID Vaccination Healthline is busy when you call, you’ll need to wait to talk to one of the operators and you’ll be told an estimate of how long you need to wait. You can choose to call back at a more convenient time if you prefer.
Translators are available if needed.
Here are some of the answers to common questions about accessing the vaccine for those in Group 3. These are not specific to MS. These answers have come from the Ministry of Health’s public information.
Q. Do I need to show proof of Disability?
A. No, You won’t need to provide proof of disability. Disabled people can access the vaccine as part of Group 2 or Group 3. The Ministry are not expecting people to provide proof of disability, such as a medical certificate. This means you can decide yourself whether you live with a disability, using the definition provided on their website. Everyone will get access to the COVID-19 vaccine over time, so you’ll have an opportunity to be vaccinated regardless of whether you choose to self-identify as disabled or not
Q. I’m a family member or carer of a person with a disability when can I get my vaccine?
A. Carers of people with a disability, family and whanau are in Group 3. People caring for people with a disability, including family and whanau of disabled people, are in Group 3. It doesn’t matter if the person they are caring for isn’t currently eligible for the vaccine (for example, if they’re under 16 years).
Q. I have complex health needs and struggle to communicate these what can I do?
A. A Health Passport may help you. Letting health workers know what you need can be hard, especially if you have complex needs. The Health and Disability Commissioner is working with hospitals around the country to introduce the Health Passport.
You can order or download your copy and update it with information about how people can support you and communicate with you. It’s the sort of thing you could take if you’re going to a hospital or vaccination centre, or when you use other health and disability services, such as visiting your GP or meeting a new carer.
Visit the Health and Disability website to find out about the Health Passport, find guidance about completing it and order a copy or download one to print and complete: Health Passport – Health and Disability Commissioner (hdc.org.nz)
Q. I have heard that the Janssen vaccine is also available is it right for me?
A. Medsafe provisionally approves Janssen COVID-19 vaccine but it is not currently available in NZ. Medsafe has granted provisional approval of the Janssen COVID-19 vaccine for those 18 years and over. This does not mean that the Government have committed to using the Janssen vaccine in New Zealand but having the option increases choices and gives more flexibility if we need it. Cabinet is still to consider the best options for use of this single-dose vaccine and a decision is expected in August.
Should it be available in NZ, MSNZ will update our information about the Janssen Vaccine for people with MS from the currently available data.
Q. How do I report side effects?
A. You can report these online or via Healthline. Like all medicines, the vaccine may cause side effects in some people. Most side effects are mild and don’t last long. People who have been vaccinated for COVID-19 are asked to wait for 20 minutes so medical staff can check there is no serious allergic reaction. Vaccinators are well trained to manage any adverse reaction, including anaphylaxis. If you’ve had an allergic reaction to any vaccine or injection in the past, talk to your vaccinator.
If you’re unsure about your symptoms or if they get worse, call Healthline: 0800 358 5453
If you do feel unwell after you leave the vaccination site, please use this form to report all suspected adverse effects for COVID-19 vaccines that you are made aware of: COVID-19 Vaccine: Report an adverse reaction
You do not have to be certain that the vaccine caused the event to report.
Q. Are there more vaccinators coming?
A. Ministry of Health are training more COVID-19 vaccinators. A recent Government change to the Medicines Regulations means more people in the health and disability sector can now undertake the necessary training to become vaccinators. This provides a much-needed boost to vaccinator numbers and diversity in the COVID-19 Immunisation Programme.
Q. Can my child who is under 16 get a vaccination?
A. Not currently but this undergoing review for 12-15 year olds. Medsafe has given provisional approval of the COVID-19 Pfizer vaccine for young people aged 12 to 15 years. Cabinet is waiting on guidance about when and how to use the Pfizer vaccine for those people within the vaccine rollout. Until then, people aged 12 to 15 cannot receive the Pfizer vaccine. It will not be mandatory for young people to get vaccinated.
Q. Where can I go for more information?
A. The Ministry of Health has compiled several easy read resources about Covid-19, the vaccine, rollout and staying safe. We encourage you to take a look at these which may be able to answer some of your questions: COVID-19: Easy Read information | Ministry of Health NZ
Information in alternate formats and other languages will be available at https://www.health.govt.nz/our-work/diseases-and-conditions/covid-19-novel-coronavirus/covid-19-vaccines/covid-19-vaccine-resources
The Ministry of Health have also provided information on their website about misinformation and scams if you are unsure about the validity of any of the information you are receiving.
It is well known that viral infections can cause relapses and trigger exacerbations of multiple sclerosis. The most up to date evidence shows that the risks of relapses outweigh any potential vaccine side-effects therefore people with MS are strongly recommended to get the flu and measles vaccines.
An MS diagnosis entitles you to a free and early access for the flu vaccine. It is also recommended that you receive your flu vaccine no less than 2 weeks prior or 2 weeks following your COVID vaccine.
With Group 3 access beginning, we recommend contacting your primary health provider as soon as possible to make a booking for your flu vaccine so as not to delay you being able to receive the COVID vaccine when this becomes available.
The COVID-19 vaccination program has highlighted the importance of having clear supported decision-making and consent processes for disabled people. This resource has been developed for family / whanau, close supporters and those working in the disability sector, in preparation of the roll out for the national COVID 19 vaccination programme. The Ministry of Health have prepared some Easy Read Resources on guidance, vaccine information, and some tools for supported decision-making. These resources can be found here: COVID-19: Easy Read information | Ministry of Health NZ
Brochures:
Poster:
If you are unsure about these guides your local Community Support Worker may be able to assist with this process. To find out if this service is available please contact your Regional MS Society
Anyone who has cold or flu symptoms should get a test and stay home until you have a negative test result.
For Covid-19 health advice and information, contact the Healthline team (for free) on 0800 358 5453.
This page contains general advice. We cannot make individual medical recommendations.
There is a significant amount of information on the Ministry of Health’s COVID-19 website to keep you up to date with progress and how to protect yourself and others.
We include advice collated from a number of reputable sources, including:
Ways to cope with Long Covid (video) November 2022
Your Paxlovid Plan (pdf) November 2022
Covid 19 positive – Managing your symptoms November 2022
Covid vaccine – Answering common questions by those in group 3 July 2021
Covid vaccine booking helpline now open for group 3 July 2021
Covid vaccine update for people with MS and Covid vaccination Webinar June 3, 2021
Covid-19 in Ocrelizumab-treated people with Multiple Sclerosis January 26, 2021
MS the Coronavirus and vaccines – updated global advice January 25, 2021
Covid-19 – Advice for Patients April 9, 2020
Covid-19 & MS – Global data sharing initiative April 2, 2020
Seven tips to get you through lockdown with MS March 27, 2020
We’re still here for you March 24, 2020
Alert Level 2 – Advice for people with Multiple Sclerosis March 23, 2020
Staying active at home March 19, 2020
Preparing for a pandemic March 19, 2020
Novotel Coronavirus (Covid-19) February 13, 2020
How to book your Covid-19 vaccination – Video August 11th, 2021
Time between doses of vaccination extended – August 16, 2021
COVID-19 vaccination guidance for persons with Multiple Sclerosis (MS) – October 4, 2021