On 16 July we met with Members of Parliament from the Labour Party in the Labour Caucus Room at Parliament.
This was organised by Patient Voice Aotearoa, the coalition of patient advocacy groups that is focused on improving access to modern medicines in Aotearoa New Zealand. Twelve representatives from different groups attended the meeting in person, including Fiona Imlach, Migraine Foundation Aotearoa New Zealand co-founder, and a similar number attended online, including Sarah Cahill, Migraine Foundation Aotearoa New Zealand co-founder. The fact that such a large and diverse group of people made the time to attend, at fairly short notice, speaks to the urgency and concern we all have regarding this issue.
The meeting was hosted by Hon Dr Ayesha Verrall, former Minister of Health and now health spokesperson for Labour (and member of the Health Select Committee) and also attended by Rt Hon Adrian Rurawhe, spokesperson for whānau ora and former Speaker of the House, and Camilla Bellich, spokesperson for Workplace Relations and Safety.
Malcolm Mulholland from Patient Voice Aotearoa outlined our common concerns regarding medicines access, including inadequate Government funding for medicines, lack of transparency about the process of assessment and decision-making at Pharmac (the entity that evaluates new medicines and decides which should be funded), limited consumer involvement in this process and an emphasis on cost containment rather than health benefits for patients.
These issues were acknowledged by the Labour MPs and further discussion touched on alternative funding and regulatory models for medicines, the need to invest now to prevent future (worse) health system failure, the importance of heeding patients’ perspectives and how to support positive change in the area of medicines access and improving Pharmac’s functioning.
We then transitioned over to Pharmac’s headquarters in the middle of Wellington’s CBD, to listen to Hon David Seymour, Associate Minister for Health (Pharmac) present his inaugural Letter of Expectations for Pharmac. New Pharmac Chair Paula Bennett also spoke.
A full house of media was also in attendance, as were representatives from a number of pharmaceutical companies. The most controversial aspect of the letter was Seymour’s explicit reversal of a previous expectation that Pharmac embed Te Tiriti o Waitangi in its work. Aspects of the letter we welcome include the expectation for Pharmac to work in partnership with patient groups, who should have opportunities to participate fully in the decision-making process, transparent public reporting on the timeliness of its assessments, and inclusion of the wider societal impact in decisions to fund (or not fund) medicines. This is particularly relevant to a disease such as migraine, as one of the major impacts of migraine is the reduction or loss of ability to work, as it disproportionately affects those of working age. If Pharmac included loss of earnings (and loss of taxes to the Government) as part of its cost-benefit analysis, the case for funding migraine drugs would be even stronger.
We’re grateful to Patient Voice Aotearoa for creating these opportunities to be involved in this important advocacy work and we’re heartened by the number of other groups who fully support and understand the need for, and the barriers to, better access to modern medicines.
We’ll continue to prioritise this as essential for people with migraine in New Zealand to achieve health outcomes and quality of life that are comparable to those in countries like Australia, Canada, the UK, who have far more treatment options than we do.
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