We are excited to announce that following 7 years of relentless advocacy by Multiple Sclerosis NZ (MSNZ), Pharmac have opened the consultation process to increase earlier access to treatments for relapsing remitting MS. We now need YOUR HELP to get this over the line!
In 2014 Pharmac approved the funding of Tysabri and Gilenya and at the time MSNZ argued the access criteria was too restrictive. This was confirmed to us by treating Neurologists domestically and internationally who advised they were able to diagnose MS much earlier than treatment access was allowed under NZ rules.
In 2017 the International Panel on the Diagnosis of MS officially updated the McDonald Diagnostic Criteria for MS, last revised in 2010. These changes enabled clinicians internationally to formally diagnose a person with MS following one clinical attack of MS. It removed the requirement for a relapse, or second episode, if other diagnostic factors were met.
What is different? The 2017 McDonald Criteria allows for MRI and cerebrospinal fluid analysis to confirm whether there are multiple areas of damage in a person with only one exacerbation of symptoms – referred to as clinically-isolates syndrome (CIS). MRI can also be used to confirm that damage has occurred at two different points in time. In some circumstances, the presence of oligoclonal bands in a person’s cerebrospinal fluid analysis can be used instead of dissemination in time to confirm the MS diagnosis. Dissemination in time means that there is MS-like neurological damage that is occurring at multiple points in time. Similarly, dissemination in space means that the damage is affecting multiple parts of the brain and/or spinal cord.
In June 2018, MSNZ, with the help of Professor Helmut Butzkeuven from Monash University and Alfred Health in Melbourne, a lead specialist at MS Brain Health and Managing Director of MSBase Foundation, made a presentation and subsequent submission to Pharmac. However, mistakes with processes delayed the review of the data and evidence presented and Pharmac and its Pharmacology and Therapeutics Advisory Committee (PTAC) continued to refuse to accept these international recommendations.
Our continued advocacy over the years has been bolstered by support from leading NZ clinicians, particularly Dr John Mottershead (SDHB) and Dr Deborah Mason (CDHB) helping to drive the lobbying with Pharmac. In February 2021 the recommended changes were given a medium funding priority ranking.
In 2021 Pharmac approved and funded changes MSNZ advocated for, which now keep thousands of New Zealanders on treatment for longer. While delighted with these changes, we reasserted our commitment to get earlier treatment access. Early intervention with a therapeutic strategy of treatment and lifestyle modifications helps to preserve brain health, provide the best opportunity to successfully manage the condition by reducing the risk of premature disability and disease progression. This means people with MS can continue to live long, healthy lives.
Finally, we are excited to announce that Pharmac have opened public consultation, to update the Special Authority to include the 2017 McDonald criteria. This will mean New Zealanders will be able to access treatment sooner than they can now (currently a person has to experience another attack (ie. a relapse) before they can receive funded treatment). This will bring treatment access in line with international guidelines and is a huge step forward for New Zealanders yet to be diagnosed with MS or awaiting access to treatment. To read the full proposal and new recommended criteria see here.
Your voice matters. Make it count.
Feedback to the consultation is due Thursday 2 June 2022 by emailing email@example.com. All feedback received before the closing date will be considered by Pharmac’s Board (or its delegate) prior to making a final decision on this proposal.
MSNZ has provided our official feedback on the proposal supporting it’s implementation. You can read our response here: Feedback from Multiple Sclerosis New Zealand regarding the proposal to fund treatment earlier for relapsing multiple sclerosis – 27 May 2022.
Earlier access to treatment is vital in preserving brain health and minimising the impacts of MS. MSNZ would like to hear from anyone who will be impacted by these changes and what they will mean to you. Similarly, if these changes had been made earlier, how might this have impacted you? To share your experiences with us please contact firstname.lastname@example.org. Your story matters. It is what drives us to continue to advocate for changes that have a meaningful impact.
We want to give a huge thank you to everyone who has been a part of this 7-year advocacy campaign. The medical specialists and researchers who have provided us with the evidence required, the specialists who have made their own efforts to lobby Pharmac for these changes, people with MS and their families who have shared their stories and experiences and our donors for giving us the much-needed funds to continue with our push. This would not be possible without each and every one of you. THANK YOU.