MS: Busting the Myths
December 20, 2022 | Advocacy, My Story, Newsletter, Support
As we wind down for the holidays, at Multiple Sclerosis NZ, we have taken a moment to review what a year 2022 has been and celebrate our achievements. We continue to strive for our vision of ‘A world without MS’, breaking down barriers to treatments and access that exist for people with MS across the country. As a relatively small organisation, we have not let the global impacts hold us back. We are fortunate for the support of our amazing volunteers, donors, supporters and staff. Thank you to everyone who has contributed with their time, skills and donations this year.
MS Treatments
In the last 18 months we have seen the result of seven years of hard fought, and persistent advocacy, come to fruition.
In 2014 we began calling on Pharmac to widen the entry criteria for MS disease modifying therapies/treatments (DMTs). This pressure was increased in 2017 when globally recognised changes were made to the McDonald Diagnostic Criteria. In 2020 NZ clinicians also joined the call for change.
Last year, in March 2021, the first step towards success was achieved. Pharmac partially approved the changes we had been advocating for, extending the stopping criteria. We are now seeing people staying on treatment significantly longer. People with MS no longer worried about the 100m ‘walk of shame’ and can use one or two walking aids in their assessments if necessary. The criteria change also means many considered as having Secondary Progressive MS, are staying on treatment.
In June 2022, we welcomed the announcement from Pharmac that newly diagnosed were now able to access to funded treatments earlier than ever before. The new criteria no longer requires those clinically diagnosed with MS to wait for a second episode of symptoms, attack or relapse, before they can begin treatment. These changes came into effect 1 July 2022.
This is a huge step forward in the treatment of MS in New Zealand. It prioritises the importance of early intervention being vital for preserving long-term brain health, reducing the likelihood of premature disease progression or disability. Importantly, these changes will help to relieve some of the mental stress and fear that the “waiting game” placed upon people.
For New Zealanders returning from overseas, they no longer have to weigh up stopping treatment if they don’t qualify, with coming home.
MS can be a complex condition to diagnose. We understand and appreciate that for many, these changes will not have come soon enough. However, we hope these changes will improve the diagnostic and treatment initiation process for New Zealanders from now on and in the future. We look forward to seeing the positive outcomes of these changes.
Economic Burden of MS
This prioritisation of early intervention supports the findings of the Economic Burden of MS Report 2021, released in May 2022 by the New Zealand Institute of Economic Research (NZIER). The report was commissioned by MSNZ to highlight how the economic impacts of MS were undervalued within the health system. The report shows earlier intervention of MS will save New Zealand’s health system millions of dollars per year. It will also contribute millions back into the economy through individual income related earnings.
Understanding the total costs and benefits of a health challenge is good health economics. This matters for society because a person’s health has implications for families, society, and the economy. The NZIER report provides evidence that earlier intervention and medicine funding access are key to positive outcomes for both people with MS and the economy.
W
ith the average age of diagnosis of MS being mid-late 30s, people tend to be in their peak earning years, with financial commitments and families to support. Progression of the disease to severe levels of disability can be delayed by between 6 to 10 years with early intervention. The present value of such a delay was estimated to be between $500,000 and $1 million per case over the delay period. See here to read more about the Economic Burden of MS Report.
MSNZ was fortunate to have the support of two interns, Isabella and Indica from the University of Canterbury this year. Our wonderful interns created informative social media posts and this video about the findings of the Economic Burden of MS Report.
Watch here: https://www.youtube.com/watch?v=upvyuNHR22A&t=30s
Autologous Hematopoietic Stem Cell Treatment (aHSCT)
On the 26th July 2022, following a year of campaigning and collecting signatures, Joan Perry, her daughter Anne, and representatives from MSNZ presented 10,903 signatures to ACT Deputy Brooke van Velden outside of Parliament in Wellington. Joined by Green MP and person with MS, Golriz Ghahraman, members of MS Wellington, and supporters in the community the day was a momentous step.
Following this, MSNZ and Joan made a joint written submission in August to the Petitions Committee, and an oral presentation to the Health Select Committee on the 9th November.
We are calling on Te Whatu Ora to make aHSCT an available treatment option for those who the evidence shows will benefit.
People are usually diagnosed with MS between their 20s and 50s, and on average in their mid 30s. This is a prime time for career building and families. Fatigue and cognitive impairment, along with the ever-present risk of relapses and accumulating potentially irreparable disability are the major prohibitors to employment and leading a normal life. MS Fatigue not just tiredness, it completely overwhelms a person leaving them unable to often do simple tasks such as getting ready in the morning, going to work or playing with their children.
Overseas aHSCT has been a safely managed and effective treatment for MS for over ten years. In studies comparing clinical outcomes of aHSCT to available DMTs, aHSCT outperforms conventional treatments. Results show:
New Zealand’s leading MS Neurologists and Haematologists support the availability of aHSCT for appropriate patients. They have proposed an access criteria in line with the UK and Australia and based on over 20 years of research. The same treatment has been used for more than 20 years in NZ for blood cancers. NZ has the clinical capability to do these procedures now.
Over 100 New Zealanders have self-funded between $70k and $200k for treatment in countries such as Russia, Mexico, Singapore and India. Overseas treatment adds significant risks to patients. The treatment wipes out a person’s immune system which takes significant time to recover and is done often without the support of family, or NZ health professionals.
Providing the service in NZ at one or two key centres will enable better monitoring of patients, pre and post-treatment, involving their primary clinicians throughout the entire process and reducing the financial burden and health risks for patients and their whanau.
NZIER, in its Economic Burden of MS Report 2021, estimated the total cost of MS in NZ to be $266.3m annually. This is an average cost of $64,500 per person with MS per year. 1900 New Zealanders are currently receiving funded disease modifying therapy in New Zealand. Two of the most commonly used DMTs have an average yearly cost per patient of $25,850.
In most cases, aHSCT is a one-off intensive treatment, with little need for further treatment. This means they often no longer need the regular use of infusion beds, saving the health system significant resources. aHSCT could save the government medicine and infusion costs every year for 25+ years.
The cost benefit analysis, undertaken by the Northern Region Clinical Working Committee, shows the cost benefit of the treatment is less than two years. This cost analysis does not include the savings to other Government Agencies such as Health and MSD as well as the substantial costs to people with MS, their families and community organisations.
We know from the NZIER report, the cost of MS to the health system of $130.5m in 2021 was only half of the total societal costs which were $266.3m.
The additional benefits include:
The total estimated employment related loss for individuals with MS was $82 million annually.
It is essential that given the demonstrated cost savings, economic benefit to the taxpayer and also to PwMS and their families that adequate resources are devoted for the 10-15 people a year who we estimate will meet the current criteria.
The MS community in NZ have shown their commitment to this treatment by funding through the NZ MS Research Trust for a young NZ doctor to go to Sydney to study the treatment there.
At a time when New Zealand is under critical health and financial pressures, making aHSCT available has clear clinical and financial benefits to the health sector, other government agencies and to PwMS and their families.
Siponimod for Secondary Progressive MS
In August 2021 MSNZ made a submission to the independent review of Pharmac and its processes. Organisations, like our own, raised consistent issues with transparency and need for wider consultation with patient groups. In 2022, as part of their assessment of Mayzent (Siponimod) for Secondary Progressive MS (SPMS), Pharmac reached out to us to understand more about the unmet need.
We are now seeing people staying on treatment for longer, and this is likely to include many who would typically be classified as Secondary Progressive. However, for those not currently on treatment, the ability to access it is extremely difficult.
As part of our consultation we launched a snap survey. We were overwhelmed to have received 50 responses in only 4 days from people with SPMS. The responses supported our submission to the Pharmacology and Therapeutics Advisory Committee (PTAC) review.
In November 2022 we were advised that PTAC recommended listing Siponimod with low priority and have requested further advice from the Neurological Advisory Committee regarding appropriate Special Authority criteria.
PTAC’s recommendation noted specifically the consideration of the:
MSNZ is pleased that there is recognition of the severe unmet health need. However, there is still substantial work to be done to progress the recommendation higher up the priority list. We will endeavour to provide updates as these become available.
We would like to thank the 50 individuals who provided substantive, personal and impactful feedback to our survey. The responses were hugely valuable in assisted with the focus and direction of the submission. The feedback received highlighted the value of first-hand accounts and engagement with impacted communities in addressing inequities faced in the system. Pharmac have also since commented to us that:
“We found the MSNZ submission incredibly valuable. Having the voice of those with SPMS included and the real life experiences was both moving and important for us to receive to consider in the assessment of siponimod. Thank you again for providing this to us.”
Once again, thank you for sharing your personal and in many cases heart-breaking experiences. The feedback is continuing to be used by MSNZ in reviewing our advocacy priorities as it highlighted multiple areas of need within the MS community.
Where are we heading?
Having ticked off many of our core goals over the last 18 months we can now reprioritise and address inequities in access to services and health and wellbeing. Of priority will be:
We also look forward to launching our new information resources by mid 2023 and reporting on the outcomes of our Good Service Project in collaboration with MS Brain Health.
Thank you to everyone who has followed, supported and encouraged our efforts. A particular thanks to all those who have shared their stories with us, our MS specialists, donors and all people with MS who continue to be our source of strength and encouragement. Our work could not happen without the support of the community and we ask that you consider us when making your donations, helping us to continue to make great strides. As a small organisation we do not let this hold us back from doing big things!
From all of us at MSNZ, we wish everyone a safe and enjoyable holiday period.