MS: Busting the Myths
May 30, 2023 | Advocacy, Awards, Media
Media release: Tuesday May 30th 2023
The health charity advocating for the more than 4100 New Zealanders living with multiple sclerosis (MS) has won a prestigious international award recognising its tireless eight year battle to have Pharmac widen access to vital drug treatments – with people now able to start their treatments earlier, stay on them longer, and significantly reduce their risk of irreversible disability.
Multiple Sclerosis New Zealand (MSNZ) has been awarded the UK’s Oxford Health Policy Forum Team Award in the 2023 MS Brain Health Awards – alongside fellow award winners from the UK and Yemen – for “creating a better future for people living with multiple sclerosis and their families.”
MSNZ National Manager Amanda Rose says the organisation is thrilled to receive such international recognition, acknowledging its hard-fought campaign to eliminate a restrictive set of rules which were severely limiting peoples’ access to life-extending treatments.
“This honour, coinciding with World Multiple Sclerosis Day, is incredibly meaningful to us. Despite eight years of hard-fought advocacy, we were committed to achieving our goals. As a relatively small not-for-profit, the changes we advocated will have a huge impact on the lives of thousands of New Zealanders diagnosed with MS and their whānau, now and in the future,” says Rose.
The Oxford Health Policy Forum recognised MSNZ’s work to establish the first “evidence-based criteria” for New Zealanders with MS needing treatment access, eliminating a restrictive set of outdated criteria – which one international expert labelled as “cruel”.
MSNZ first began advocating for Pharmac to widen access criteria for disease-modifying drug treatments in 2014. The organisation relentlessly argued that the criteria imposed were not evidence-based and that no other country imposed such restrictions.
The organisation reached out to national and international experts who regularly supplied it with a growing body of evidence advocating for change. Multiple Official Information Act request were made to challenge errors in Pharmac’s processes, and patients were also encouraged to be more vocal self-advocates.
Finally, In March 2021 Pharmac made significant changes to the “stopping criteria” for people with MS, allowing them to remain on drug treatments for longer (up to an Expanded Disability Status Scale of 6.5 out of 10). Also eliminated was the need for patients to undergo the annual “walk of shame” in order to remain on their drug treatments – a 500 metre unaided walk – which caused unnecessary mental stress.
Then, in July last year, Pharmac accepted changes to what’s called the ‘McDonald Criteria’ used by clinicians to diagnose MS. The changes give those newly-diagnosed with MS earlier access to treatments, allowing them to start immediately instead of having to wait for a relapse. One clinician had compared the previous situation to “a stroke patient requiring a second stroke before they are treated.”
Rose says both Pharmac changes were welcome and gratefully received, and have significantly reduced the risk of premature disease progression, irreversible damage and disability for people in Aotearoa living with MS.
“Advocacy is a long game, and one MSNZ is committed to,” says Rose. “At times of frustration, what inspired us to continue was knowing that the people impacted by MS who were struggling to access treatment early enough and for long enough deserved better.”
Dunedin-based Consultant Neurologist Dr John Mottershead, a member of several Pharmac committees, says this award is well-deserved recognition of the tireless work MSNZ has undertaken.
“This award reflects the tremendous skill and energy MSNZ has undertaken to advocate for improved treatment access for people with MS in Aotearoa. There is no question that these efforts have significantly improved quality of life for those living with the disease and their whānau,” says Dr Mottershead.
MSNZ says while more advocacy work is needed, its pleasing there’s now recognition in Aotearoa New Zealand that early intervention with diagnosis and treatment is vital for preserving long-term brain health.
“This award isn’t just for us. It is for everyone who played their part in advocating for these changes, namely the clinicians, people impacted by MS, our loyal donors and our member organisations. This award reflects the power and value of the collective voice. We thank everyone who was involved over the years for their contribution,” says Rose.
ENDS
MS Brain Health Awards 2023_press release_Final
For interviews and more information please contact:
Amanda Rose 03 366 2581
National Manager MSNZ amanda@msnz.org.nz
Neil Woodhams 021 531 654
President MSNZ president@msnz.org.nz
