Hundreds with Multiple Sclerosis ‘Abandoned’
There’s concern that a Pharmac decision to fund the drug Ocrelizumab (Ocrevus) for certain patients with multiple sclerosis from December 1st will still see hundreds missing out due to the national drug-buying agency’s ‘inhumanely strict’ treatment access criteria.
“While Multiple Sclerosis New Zealand (MSNZ) absolutely welcomes the news that Pharmac will now fund Ocrelizumab for a sub-group of patients with the most common form of the disease, Relapsing Remitting Multiple Sclerosis (RRMS), we remain disappointed that Pharmac’s out-dated access criteria will deny around 600 further New Zealanders suffering from this and other forms of the disease the chance to improve their lives and limit the impact of their condition” says MSNZ National Manager Amanda Rose.
Around 4000 New Zealanders currently live with Multiple Sclerosis or MS. Over half (around 2000) suffer from RRMS which sees symptoms and “attacks” come and go, with disability increasing over time. Around 15% (around 600 patients) are diagnosed with another form of the disease, Primary Progressive MS (PPMS), in which the symptoms are constant, with continual decline.
Pharmac has decided to only fund Ocrelizumab for RRMS patients who, as part of the MS Special Authority Criteria, must have an annually-tested disability score of 4 or less out of 10 on the Expanded Disability Status Scale (EDSS), proving they are able to walk 500m continuously and unaided. The current criteria leaves several groups of patients out in the cold and denied access; including those with RRMS whose disability score is greater than 4 or who have progressed by two points from their initial starting point for a period of 6 months or more, as well as the 600-odd patients with PPMS. Ocrelizumab is fully funded for a much wider and more disease-advanced group of RRMS patients in Australia, the UK, Europe and the USA, while the drug is readily available to patients with PPMS in both the USA and UK. Ocrelizumab is the ONLY disease-modifying treatment shown in clinical trials to halt disease progression in people with PPMS and has been approved for use by Medsafe, the FDA, NICE and the European Commission.
MSNZ has been lobbying Pharmac for some time to widen its Special Authority Criteria for New Zealanders and has also requested the agency provide evidence to support its current limited access rules.
“Pharmac’s access criteria for all MS treatments is not evidence-based” says Amanda Rose. “Several leading international experts have expressed astonishment at the strict criteria MS patients here in NZ are subjected to. Clinical evidence clearly demonstrates that for all forms of MS patients benefit from earlier drug access for a longer, more sustained period of time”. MSNZ says around 20 New Zealanders with PPMS have until now managed to get private access to Ocrelizumab through Roche’s Compassionate Programme. Some report having zero or limited regression of their condition or any new lesions since starting treatment.
“For people with Progressive MS, being able to halt the condition in its tracks is monumental” says Rose. “These people are continuing to remain active, contributing to the economy, their families and their communities”.
MSNZ President Malcolm Rickerby says Pharmac’s decision to fund Ocrelizumab came after more than two years of MSNZ lobbying.
“MSNZ has been strongly advocating for Ocrelizumab to be funded since May 2017” says Rickerby. “We stepped up this pressure after receiving a positive indication for funding from Pharmac’s own Pharmaceutical Technical Advisory Committee (PTAC) in November 2018, demanding action and an explanation as to why the process was taking so long. While we very much welcome Pharmac’s eventual decision, it’s possible that without this sustained pressure, people with MS would still be waiting.”
MSNZ acknowledges that Pharmac’s PTAC
committee will be reviewing the access criteria for all MS
treatments at its November meeting this year. It says it
welcomes this review and hope it results in more patients
being given access to treatments earlier and staying on them