PVA protest at Parliament

Rare Disorders NZ and our rare disorder collective attended the Lie Down for Life at Parliament yesterday. This event was organised by Patient Voice Aotearoa to call for better access to modern medicines for genetic, undiagnosed and rare disorders.

Protesters lay down by the steps at Parliament for five minutes in the rain to show their determination for better access to medicines. Similar protests took place around the country in 11 cities including Auckland, Hamilton, Christchurch and Dunedin.

It was a very moving event, with politicians from every political party present to hear the call for improved access to life-changing medicines. Health Minister Andrew Little acknowledged the dedication of the people campaigning for change but made no commitment to improving medicines access.

Examples of medicines for rare illnesses include a treatment for Pompe Disease, Myozome, which is funded in 76 other countries; a life-changing drug for Cystic Fibrosis named Trikafka; and Spinraza for Spinal Muscular Atrophy. 

International evidence shows that rare disorders need specific pathways and policies, and taking action makes economic, social and moral sense. New Zealanders are shocked to learn that New Zealand lags behind most OECD countries in supporting people living with rare disorders to access vital health and social care.

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