September 14, 2022 | Advocacy, Progressive, Treatments
Currently, only approximately 1900 of the over 4130 New Zealanders diagnosed with MS are able to access funded Disease Modifying Therapies (DMTs). In particular, those with progressive forms of MS, Secondary (SPMS) and Primary Progressive MS (PPMS), have extremely limited access options.
While not explicit in the DMT criteria wording, changes advocated for by MSNZ and approved within the last 18 months, mean some of those with Secondary Progressive MS may now be able to access DMTs if they have recent relapse activity and meet other diagnostic criteria. Those on treatment are also able to remain on treatment for longer, up to and including EDSS 6.5, or as long as they can walk 100m aided or unaided. Including using a walker or sticks.
Secondary Progressive MS occurs when a person who previously experienced periods of relapse and remission move onto a stage where they see gradual and consistent progression without reprieve or remission. Once this ongoing progression occurs, access to treatments is extremely restricted, and many are required to stop treatment entirely. Stopping treatment furthers, and often quickens, disease and disability progression. Those with Progressive MS are left feeling hopeless and forgotten.
In August 2021 we made a submission to the Independent Pharmac Review. In our submission we raised the need for greater patient lobby group consultation. We are pleased to see this has been heard. Pharmac reached out to us earlier this year to ask for our feedback on Siponimod (Mayzent), a treatment they were reviewing for Secondary Progressive MS. Keen to make the most of this opportunity MSNZ has since made a submission which is under review by Pharmac’s Pharmacology and Therapeutics Advisory Committee (PTAC) at their August meeting. We await the outcomes of this review.
For those with Primary Progressive MS, Ocrelizumab currently sits on the “Options for investment” list, which includes a ranked (confidential to PHARMAC only) list of all applications that PHARMAC would consider if the budget allowed. Unfortunately, we don’t have any clear timelines on funding dates at this time.
With that said, there are the two PPMS studies in NZ currently underway. You may wish to discuss these with your Neurologist to understand whether you are eligible to participate:
Through our work on the Siponimod submission we sought the input of those diagnosed with Secondary Progressive MS. Feedback to our short survey highlighted several pertinent and recurrent issues. Most commonly raised were the mental health and financial impacts of progressive chronic conditions; carer burnout, burden and lack of support; and the lack of access to services such as physiotherapy, psychiatry and counselling. We want to thank all those who provided feedback to this survey for sharing their valuable first-hand experiences of how Secondary Progressive MS impacts those diagnosed and their whānau.
With much of our advocacy work regarding earlier and extended access to treatments having received ‘the big tick’, MSNZ has now begun the process of reviewing our priorities. The feedback received has indicated a necessary redirection of our advocacy to address the social, institutional, and economic barriers that impact the MS community and their quality of life. More information about our strategic redirection will be provided as the review progresses.