MS: Busting the Myths
November 27, 2020 | Advocacy, Life with MS, Treatments
Media Release
No More Dreaded 500 Metre ‘Walk of Shame’ For Kiwis With MS?
A six year battle to allow multiple sclerosis patients continued access to vital funded drug treatments may soon be over, with news that Pharmac is finally considering extending its points-based system for patients with more developed disease.
“After years of persistent lobbying to remove a rigid and non-evidence based treatment barrier, this is welcome news for many of the 4000 New Zealanders living with multiple sclerosis” says Multiple Sclerosis New Zealand (MSNZ) President Neil Woodhams. “If adopted, patients will be allowed to continue accessing MS treatments that are clinically proven to delay or stop progression for far longer than is currently the case”.
Pharmac has now issued a consultation document seeking feedback on a proposal to allow patients to remain on MS treatments until they progress past a score of 6 out of 10 on the Expanded Disability Status Scale (EDSS) used for measuring disability. The changes, if adopted, will take effect from March 1st next year. Currently, all patients have their drug access stopped automatically if their EDSS score either increases by more than 2 points or exceeds 4.5 points and shows no sign of improvement within six months.
As things stand right now, being granted continued access to their drugs requires patients to perform a 500-metre walking test, unaided and without stopping, at their annual clinical review– a stressful ordeal, dreaded by many patients. This new Pharmac proposal, if passed, would dramatically reduce the total walking distance required from 500m down to 100m, allow for use of walking aids, and can be done up to 6 months before their annual renewal date. While MSNZ would like to see other factors considered when assessing treatment benefit, such as improved or stabilised fatigue and cognition, it accepts that this reduced walking distance would be a significant improvement for patients.
“The current outdated and prescriptive Pharmac walking criteria have cruelly and prematurely cut many Kiwi patients adrift from continued access to beneficial treatments” says Woodhams. “The physical and emotional toll of this has left many feeling abandoned with nowhere left to turn, at a time when they need those treatments most and are still benefitting greatly from them. The current annual 500m ‘walk of shame’ is an ordeal one world-leading neurologist has described as ‘inhumane’. The pressure of having to complete it has left MS patients distraught, fearful and tearful for far too long. It’s high time it was ditched”.
The Pharmac proposal is also seeking feedback on the potential removal of the Multiple Sclerosis Treatment Assessment Committee (MSTAC). This means that treatments would be available on special authority issue by a neurologist or general physician, provided that the patient has MS in accordance with current disease definitions. This will dramatically speed up the process for earlier treatment access, taking pressure off the country’s under-resourced neurologist workforce who are currently bogged down with the bureaucracy of the current system. The changes would also mean that some people who have stopped treatment too early will be able to again access it, as long as they fit the new criteria.
MSNZ is still very disappointed and concerned patients will continue to be denied or delayed in starting these treatments until they have a second MS episode. This has been described by one health professional as “asking a stroke patient to have a second stroke before being treated”.
“Patients with early-stage, clinically definite MS still won’t be able to get timely access to treatments until it can be proven they’ve had a second ‘attack’ or episode of symptoms” says Woodhams. “Insisting on a second ‘attack’ risks some patients suffering permanent serious disability before therapies are made available to them – disability they may never recover from. Pharmac must now adopt the internationally-accepted 2017 McDonald Criteria which many other countries follow, allowing an MS diagnosis based on other clinical factors. There’s credible research that MS treatments work best when they’re prescribed to patients as soon as they are diagnosed to improve long-term brain outcomes, yet Pharmac appears reluctant to acknowledge the international evidence around this”.
MSNZ is also seeking clarification from Pharmac that no MS patients currently nearing the current stopping criteria or due for their annual review between now and March 1st next year will risk their treatment being stopped while the proposal is under consultation.
Your Feedback is Important
Pharmac have released public consultation on a proposal to widen access to funded multiple sclerosis treatments and transition access from the Multiple Sclerosis Treatment Assessment Committee (MSTAC) Panel to a standard Special Authority.
Please follow this link to read the proposal and recommended changes to the Special Authority for access.
Pharmac are asking for feedback on this proposal.
Consultation closes 4pm Friday 18 December and feedback can be emailed to mstaccoordinator@pharmac.govt.nz.
Alternatively Multiple Sclerosis NZ are seeking testimonials from people who will be impacted by the proposed changes to include in our submission. If you would like to be included in this please send your testamonial to amanda@msnz.websitereview.nz. Thank you.
Please feel free to circulate this to others who may be interested.
Relevant news:
Click here to view the TVNZ news clip.
Click here to read the article by News Hub.
Click here to listen to the RNZ clip.
Click here to read the article on Voxy.