MS: Busting the Myths
September 14, 2021 | Advocacy, Media, Study, Uncategorised
Media Release: 14 September 2021 (For Immediate Release)
A new trans-Tasman study has highlighted alarming health inequities between New Zealand patients living with multiple sclerosis (MS) and their Australian counterparts — adding fuel to the ongoing fight for Pharmac to “do the right thing” and increase access to drug treatments here.
“We’ve known for many years that New Zealand patients with MS have been the poor cousins of Australia in terms of timely access to vital drugs or disease-modifying treatments” says Multiple Sclerosis New Zealand (MSNZ) President Neil Woodhams.
But this study confirms concerning information we didn’t know but had long suspected about the long-term effects of denying Kiwi patients access to these treatments. The results prove that patients here are far worse off, disabled sooner and suffering from a poorer quality of life.”
The study, published recently in Multiple Sclerosis Journal, compared 584 Australian and New Zealand patients with different levels of disease-modifying treatments (DMT’s) availability 10-20 years after their initial diagnosis. It surveyed 328 patients from Australia and 256 from New Zealand. All patients had been diagnosed with the more prevalent relapsing-onset, relapsing-remitting and secondary-progressive forms of the disease.
The Australian cohort reported nearly double the rate of access to MS drug treatments- a 94 percent usage compared to only 50 percent for New Zealand patients; an 87 percent shorter wait time than Kiwis to get access to the treatments; and once prescribed them, were allowed to keep taking them for a far longer duration without having access removed due to changing disability scale.
The long-term downstream effect of this superior drug treatment access translated to a lower step for Australian patients on the 10 point Expanded Disability Status Scale (EDSS) – used by clinicians worldwide to rate levels of disability, 1 being the least disabled and 10 the most. The EDSS scale is used as a Pharmac decision-making tool for NZ patient access to MS drugs, with many Kiwi patients being cut off treatment when their disability increases to a certain step. The Australians in the study who had the benefit of MS drug access came out on average at 3.5 overall on the EDSS scale as opposed to a half-step more disabled 4.0 for New Zealand patients. As an example of this half-step overall difference, an Australian patient with drug access might be able to walk 500 metres with an EDSS of 4.0, whereas a Kiwi patient with more restricted access who is at the same point in their disease would only be able to walk 300 metres, and therefore rated with an EDSS of 4.5.
“Our study clearly shows that the more accessible these disease-modifying treatments are for patients as in Australia, the slower the progression of their disability and the more improved their quality of life” says the lead New Zealander researcher in the study, Christchurch neurologist Dr Deborah Mason.
“We know from previous research that it takes an average of five years for a patient to be formally diagnosed with MS in New Zealand, due to a shortage of neurologists and over-long waits for MRI scans to confirm diagnosis among other issues. Patients in Australia not only receive more timely diagnosis, but we can now see that their long-term quality of life is far better due to earlier access to disease-modifying treatments.”
Neil Woodhams says these results are a clear signal for Pharmac to widen access to DMT’s for New Zealand patients.
“MSNZ has had some success in recent years getting Pharmac to fund a wider range of drugs and relax some very restrictive access criteria. This has only been achieved after dogged persistence in our advocacy to Pharmac over a seven-year period. During that time hundreds of patients in this country have missed out by being denied access to, or being taken off treatments due to outdated and unfair Pharmac criteria. This has left them watching on helplessly as their disability levels increase.”
MSNZ is continuing to call on Pharmac to fund earlier access to treatment for those who meet international diagnostic criteria, which differs from the criteria set here by Pharmac.
“These treatments are proven to delay disability onset and progression, allowing patients to stay independent for longer. Patients are telling us this is what they want – to stay on their feet longer, keep their jobs and contribute to their whānau and the economy. The Australian equivalent of Pharmac seems to understand this. Why doesn’t Pharmac?”
The study’s publication coincides with this year’s national MS Awareness Week. Unfortunately, it’s the second time it’s been impacted by COVID-19, forcing the cancellation of street appeals for many of MSNZ’s 18 Regional Societies.
“We have real concerns that many areas of the country will need to reduce the level of community advocacy and essential services they provide to patients due to a reduction in income” says MSNZ National Manager Amanda Rose.
“These include the delivery of information and support to people who may be coming to terms with a new diagnosis, experiencing a relapse or progression of their disease, having their treatment stopped or needing an advocate to access vital community services. We ask New Zealanders to please give whatever they can this year to help us support patients with MS, to ensure they live well”.
Donations can be made to the MS organization of your choice at: https://fundraise.msnz.org.nz/faceofms
Download the study here.
Download the COMPANZ research paper from the study.
For interviews please contact:
Neil Woodhams – MSNZ President: 021 531 654 president@msnz.websitereview.nz
Dr Deborah Mason – MSNZ Medical Advisor, CDHB neurologist: 021 400 893 deborah.mason@cdhb.health.nz
Amanda Rose – MSNZ General Manager: 03 366 2581 amanda@msnz.websitereview.nz