MS: Busting the Myths
February 25, 2025 | Advocacy, News, Treatments
Over the last decade, we have seen the needs of people with MS are changing. This is largely due to the availability of higher efficacy DMTs in NZ, and ever-advancing research is also telling us even more about the importance of practical lifestyle modifications to improve health outcomes. As a result, people are continuing to work, stay active and experience less interruptions to daily life.
However, this is not the case for everyone. Treatments are still not available for everyone; the workforce crisis within the health system makes access to critical neurological and allied health services difficult; and changes with funding support systems add additional stressors. We hear reports of increased rates of financial worries, loneliness and mental health concerns across the country.
To ensure we are aware of the needs within our community, we ask you to report any barriers you experience that impact your ability to live well with MS to your Community Advisor, who can inform us at Multiple Sclerosis New Zealand (MSNZ). The more we hear about the concerns within our community will help us understand the national impact and aid us to advocate on your behalf.
Disability Support Services
A key priority for MSNZ is engaging in the Disability Support Services consultation. This is for anyone receiving disability funding through Needs Assessment and Service Co-ordination (NASCs) or Enabling Good Lives (EGL). There are likely to be significant national changes to disability support services as they head towards a more consistent, transparent and equitable process of assessment and funding. Now more than ever it is important to have your say in what meaningful flexible funding is to you. Read more about how you can participate on our website here.
It is pleasing to see the consultation aiming to understand views on support needs of family, whānau, and carers alongside those they support. The Carers Alliance have worked tirelessly for many years to see carers needs are recognised, with access to appropriate, fair and consistent respite.
Your voice does matter so don’t dely. Engage!
State of the health sector
Unsustainable workforce pressures continue to worsen right across the health system. GPs, specialist neurology teams, diagnostic services and allied health are critical to timely access to diagnosis and successful ongoing management of MS. Pressures are felt right through the health system, including community organisations like your local MS society as they look to navigate services and fill gaps.
Advocating for sufficient funding for critical health and community services will continue to be an important advocacy topic for us.
If you are experiencing alarming delays accessing health services, please do report these to your Community Advisor or to MSNZ directly. As evidenced by our campaign in 2024, when people with Primary Progressive MS in Canterbury were unable to access Ocrelizumab, our voice can have a positive impact particularly when evidenced by lived experience.
Reforming Pharmac
Last year MSNZ was invited to join a select group of patient advocates that have significant experience with Pharmac. We were invited to provide input into recommendations to reset and reform how Pharmac engages with patient advocacy groups and patients, to improve outcomes for New Zealanders and access to medicines. Engaging in the process was eye-opening, heartbreaking, validating, and encouraging. While everyone came with their unique experiences, it was interesting to engage with representatives from a wide range of health not-for-profits and see commonalities in thought about how to improve Pharmac’s processes and communication. There is still a significant amount of work in this space to improve outcomes for all New Zealander’s accessing medicines. We continue to engage in this process and will provide further updates as available.
Access to Medicines
We recently wrote to Pharmac to express our immense disappointment with their Health Technologies Assessment (HTA) process. 12 months ago, MSNZ urged Pharmac to include MS in the conditions approved for early access to the Shingrix vaccine for shingles, or at a minimum those on immunocompromising treatments. For most disease modifying therapies (DMTs) it is necessary to have a range of vaccinations prior to starting treatment, Shingrix being one of these. While some have been able to get funding through their DHB, others are having to self-fund $600-850+.Many are forced to ‘choose’ not to be vaccinated. We understand the inordinate delays are due to MS being one of many conditions under review.
MSNZ continues to advocate to Pharmac for the funding of five additional treatments: Cladribine, Kespimta, subcutaneous versions of Tysabri and Ocrelizumab and Siponimod. The first four of these therapies would reduce access barriers for many patients and reduce time in infusion clinics, freeing up chairs for other patients requiring infusion treatments. While people are now able to stay on treatment significantly longer, many of whom might be considered to have Secondary Progressive MS (SPMS), Siponimod would be the first treatment specifically for this form of the condition.
Research
We are looking forward to our new research project starting in March. Our researcher Natalia Boven, at Compass Campus at the University of Auckland, will use data available on the Integrated Data Infrastructure (IDI) to track epidemiological changes of MS in New Zealand, and compare to the 2006 MS Prevalence Data. We already know from Natalia’s initial research last year that the numbers of people with MS in New Zealand have increased from 2917 in 2006, to 4860 as of June 2022. We expect those number to now be around 5000. We look forward to providing you with updates of Natalia’s findings towards the end of the year.
Information Resources
Its been over 12 months since we launched our new Living Well with MS resources and over 1300 of these have been distributed nationally. We would love to hear your feedback on these resources, so please get in touch. If you haven’t yet seen the information packs, please reach out to your Community Advisor.
This year we will be working on a major project to refresh our website. This update will review all the information, ensuring it is up to date, relevant and accessible.
Coordinating and Leading Advances in MS Care
Alongside our advocacy and information programmes, we’re on a mission to coordinate and lead the advances in best practice MS care to improve the health and wellbeing outcomes of those affected by MS.
Regionally employed Community Advisors (CAs) are critical to the delivery of care for people, families and communities. Our new Clinical Services Lead is connecting with our member organisations, to understand how we can best support and strengthen the regional CA workforce nationally. Through enhanced career training and development, CAs will be supported to improve outcomes for people affected by MS in their local communities.
As regionally based organisations, it is critical for us to understand the unique strengths and pressure points that our members work within. Access to specialist neurology or allied health services varies throughout New Zealand which creates inequity for the workforce and the people they care for. We are focussed on working with our member organisations to meet their individual needs to retain caring, people-centred and evidence-based models of service.
Looking ahead
Despite only being at that start of 2025, we’re looking forward to what is on the horizon and how to prepare. Next year will be an election year, and one which we expect to be hotly contested in the public eye. Right now, political parties on all sides will be looking at setting their policies and manifestos. This year is critical for us to have the opportunity to meet with key representatives on all sides of the political divide, ensuring the needs of people affected by MS are heard. We will also continue to engage closely with our neurological, health, disability and carers alliance partners on matters of collective concern to amplify our voice.
Looking back
At the end of last year we reflected on our achievements in 2024. We encourage you to take some time to read our review: https://msnz.org.nz/2024-a-year-in-review/.
We look forward to providing you with further updates throughout the year as we progress towards our goals and mission.