Medicines NZ Parliamentary Dinner

Last night RDNZ Chief Executive Lisa Foster attended the annual Medicines NZ dinner at Parliament. This was an opportunity to meet with policymakers and ensure the collective voice of rare disorders is included within the solutions proposed to address medicine inequity.

Here is Lisa’s report:

Focus: Medicine Inequity – the problems and potential solutions

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Dr Nina Scott – Public Health Doctor

Ms Leanne Te Karu – Pharmacist Prescriber

Mr Todd Krieble – NZ Institute of Economic Research,Deputy CEO

I attended a Parliamentary launch to discuss medicine inequity and request better access to medicines to improve patients lives, the health system and the wider economy. This event looked at the inequities for Māori and Pasifika people within our wider health and social system and the structures based on institutional racism from colonisation of New Zealand. This provided an opportunity to highlight the fact that inequity for people with rare disorders crosses all ethnicities with a cumulative negative effect on already disadvantaged groups. I raised this point after the panel’s presentation to ensure the rare disorder community is acknowledged and included.

There were a range of attendees ranging from MPs, pharmaceutical representatives, researchers, clinicians, patient group representatives and economists, and this allowed opportunity for great discussion and cross-over of awareness, ideas and possibilities. I was lucky enough to speak with Green Party MP and Associate Health Spokesperson Julie Anne Genter, who warmly accepted my request for a follow up meeting so that the common challenges facing people with rare disorders can be better understood. Our new Health Minister Chris Hipkins was present, which offered the chance to speak to him about our Fair for Rare NZ campaign and to request a meeting with him to clarify the issues.

I also spoke with Shane Hunter from National Health Information Framework which will lead to a follow-up meeting to look at how New Zealand can capture rare disorder diagnosis data. As IT has a flow on effect for equity and if we can capture accurate numbers and figures of people living with rare disorders in New Zealand we would then have the ability to highlight the value of taking this vulnerable group seriously and including our collective voice within new Health and Disability Review implementations. This is extremely important as without data on rare disorders the health and social resources are not being provided. This is highlighted in the fact that World Health Organisation details that 70% of the world’s health expenditures use health coding for reimbursement and resource allocation. To unite against inequity we need to be committed to technology, and ensure we are part of it so we can be recognised as a collective group.

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