MS: Busting the Myths
April 7, 2020 | Advocacy, Treatments
In February Pharmac published the minutes of the Pharmacology and Therapeutics Advisory Committee’s (PTAC) November 2019 meeting. The minutes reported the outcome of the meeting at which MSNZs submission to widen the Special Authority (SA) access criteria for disease modifying treatments (DMTs) was reviewed.
Note: The submission had originally been made in June 2018 but was not fully reviewed at the time. MSNZ pushed for a full review of the evidence presented.
In our June 2018 submission, MSNZ requested and provided evidence to support:
The minutes reported that PTAC have
“recommended amending the entry criteria such that access to funding for MS treatments would be from EDSS 0 to EDSS 5.5, with funding ceasing should an EDSS of 6.0 be reached, regardless of the EDSS score at entry, with a high priority. This was based on the high health need of people with MS and their carers, the financial impact of widening access, the possible QALY gains from widening access and the practicalities of clinically measuring disease progression.”
Multiple Sclerosis NZ is pleased that PTAC have made this decision and given it high priority however, we are conscious that this is only the first step as funding still needs to be approved which could still take some time.
From the Medicines NZ June 2019 report the mean waiting time between PTAC recommendation to Pharmac funding for high priority treatments was 2.46 years, ranging between 0.35 to 6.92 years. Further delays would continue to deny access to treatments or risk people stopping treatment too early, increasing their risk of relapse, disease progression and disability.
Next Steps
MSNZ is now advocating to Pharmac for funding to be approved as soon as possible.
In April 2020, as part of Patients Voice Aotearoa, MSNZ signed an open letter Open Letter to Prime Minister Jacinda Ardern to immediately provide a significant funding boost to Pharmac, with an instruction to purchase more medicines for some of the most vulnerable in our community, including funding as per the PTAC recommendations.
MSNZ has also written to PHARMAC separately, also requesting a review of the Special Authority application process to reduce the expenditure of valuable Neurologist time on applications.
Read our letter to Pharmac MS Treatments 6 April 2020.
“The Committee recommended the application to widen access to Multiple Sclerosis treatments for the treatment of CIS be declined. This was based on a lack of good quality evidence that earlier treatment, at the stage of CIS, improves long-term health outcomes. However, the Committee noted that it would be happy to review a funding application again in the future that included new evidence (not previously considered) that supports long-term health outcomes from treatment of CIS.”
MSNZ is disappointed that PTAC continue to confuse Clinically Isolated Syndrome (CIS), where a person is suspected of having MS but not confirmed due to the lack of clinical supporting evidence on MRI, with clinically diagnosable Multiple Sclerosis using the most up to date internationally recognised criteria. The McDonald Criteria was updated in 2017 and has been recognised worldwide. PTAC however, in their misunderstanding, proport there to be a lack of evidence to support adopting this new diagnostic method.
The lack of acceptance of the internationally recognised criteria mean that a number of people with clinically diagnosable MS are missing out on timely access to treatment. By the time they do have a second relapse, damage may have been accumulated which could have been preventable. Timely access to treatments is vital to ensuring long-term brain health and the best outcomes.
To clarify, MSNZ is not advocating for access to treatments for those with CIS as they may not have to MS.
Next Steps
MSNZ is continuing to advocate for earlier access to DMTs for patients with diagnosable MS according to the 2017 MacDonald Criteria.
As more information is made available we will continue to update.