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Patient Voice Aotearoa calls for Pharmac reform

Patient Voice Aotearoa (PVA) has launched a petition calling for the Minister of Health to initiate an external reform of Pharmac and to double the agency’s budget immediately, with a plan to triple its budget over the next two years in order to bring it into line with the OECD average for pharmaceutical spending.

“New Zealand has fallen so far behind the rest of the developed world in terms of medicines funding that only an immediate doubling of the budget will do, with a view to tripling it as soon as possible” says PVA Chair Malcolm Mulholland. The petition also calls for Pharmac reform, including recommendations that the agency:

• Adopt international guidelines for funding medicines, including those developed by the European Society for Medical Oncology (ESMO).
• Provides a timeframe by which a medicine will be judged to be efficacious.
• Commits to a further timeframe by which medicines deemed to be efficacious will be funded, such as in the UK where the National Institute for Health and Care Excellence (NICE) decides if a medicine works within three months and then aims to fund the medicine within a further three months.
• Ensures the patient voice is included in decisions about which medications to fund, as per NICE where two patient representatives sit on every subcommittee.
• Includes the relevant experts in the decision-making process around medicines funding. Eg, by ensuring that subcommittees include sufficient paediatric expertise when making decisions about medicines for children.
• Is compelled to follow the advice of agencies such as Medsafe, which plays an important role in ensuring patient safety.
• Establishes a ‘rapid access scheme’ where new and novel medicines are funded within a short space of time.

PVA has released a video to promote the petition featuring patients with a range of illnesses and conditions for which appropriate treatment is not publicly funded in New Zealand.

Patients featured include those with with cystic fibrosis, breast cancer, spinal muscular atrophy (SMA), multiple myeloma, Pompe disease, lung cancer, multiple severe food allergies, glioblastoma, diabetes, chronic lymphocytic leukaemia, phenylketonuria, ovarian cancer, multiple sclerosis, melanoma and bowel cancer.

“Our video clearly demonstrates how far behind the rest of the world New Zealand is when it comes to the number of medicines funded. The video shows that it doesn’t matter which disease or condition you have, there are medicines funded in countless countries that aren’t funded here. The crux of the issue is the lack of funding Pharmac receives. New Zealand’s medicines budget is only a third of the OECD average and Kiwis are paying the price, often with their lives.

“We ask people to join us in calling for the reform of an agency that arguably no longer meets the health needs of New Zealand, as well as addressing Pharmac’s extremely low budget that is no longer fit for purpose” says Malcolm.

PVA Trustee and Spinal Muscular Atrophy (SMA) Lead Advocate Fiona Tolich agrees that an urgent boost to Pharmac’s budget and reform of its processes is well overdue. “There is no ring-fenced fund for rare disorders and just under 400,000 Kiwis – 75% of whom are children – live with a rare disease. If Pharmac’s budget isn’t increased those with rare disorders will continue to be pushed to the side and access to modern medicines will remain a black spot for New Zealand.

“For conditions like SMA, that means that children with Type 1 will pass away at the average age of 13 months, whilst those in Australia will have the potential to live full lives. You start to lose hope when you realise that Pharmac doesn’t even appoint specialists with the relevant clinical experience to make these decisions, making the Rare Disorders Subcommittee appear to be there for no other reason than to tick a box. We need to reform Pharmac to prevent patients with rare disorders dying needlessly.”

Watch the video and sign the petition here:
Sign the petition on the NZ Parliament website here:

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