Media release: People with rare health conditions need equitable treatment
Rare Disorders NZ (RDNZ) welcomes the Government’s recent announcement on cancer care and is urging consideration for a wider, inclusive plan to support all New Zealanders with chronic health conditions.
“People with serious diseases that are not a cancer deserve to have equitable care,” says RDNZ Chief Executive Lisa Foster.
“We urge the government to ensure that New Zealanders living with genetic and rare disorders are not left out.”
The Government has announced it will establish a national Cancer Control Agency by December this year and will give PHARMAC an extra $60 million over two years. This money hasn’t been ring-fenced for cancer and some of the funding will go towards other health needs such as contraception and vaccines.
“This is a step in the right direction, and we appreciate the overarching principles of being equity-led, knowledge-driven, and outcomes-focused. However, for truly integrated universal healthcare we need a more cohesive approach which widens its focus to include all disease types and is not boxed into a specific diagnosis. Without this there can be no true equity as imbalance may be dictated by factors such as the size of population of the specific disease type, or the loudest voice winning,” says Lisa.
In May this year the Minister of Health David Clark sent a letter to PHARMAC outlining the government’s expectations and his own priorities, which included a strong and equitable health system for everyone, specifically referencing people with rare disorders.
Rare disease advocates are part of Patient Voice Aotearoa, the alliance which has driven these changes to cancer care. RDNZ supports Patient Voice Aotearoa and will continue to champion the stories of people with rare disorders who fall through the gaps in the system. Petitions for funding for Spinraza for spinal muscular atrophy, and Myozyme for Pompe Disease were presented to the government in May. RDNZ attended the Health Select Committee meeting alongside these groups on 7 August. More petitions for rare disorder medicines are currently open for signatures including medicines for Cystic Fibrosis, Fabry disease, Lynch syndrome and Phenylketonuria. Innovative medicines which have smaller population sizes, including rare cancers, can be more expensive and other countries, such as Scotland, have found a solution by establishing a specific pathway with alternative assessment processes.
As the umbrella organisation for all rare disorders in New Zealand, RDNZ works with more than 140 support groups, some of which are too small and under-resourced to take a public stance, to promote better health care and wellbeing for all people living with a rare disease.
RDNZ is looking to establish a Genetic and Rare Disorders Alliance in order to provide a stronger voice for the 400,000 New Zealanders living with a rare disorder. RDNZ aims to develop a proposed National Framework and Action Plan like Australia and many other countries. This would focus on the complexity and unmet need in rare disease in areas such as improved diagnosis, access to services and treatments, better data and registries, research and coordinated care, to ensure that all people living with a rare disorder get fair access to healthcare.
“The health system will continue to fail people living with rare diseases until the fundamental challenges facing people with rare disease are better addressed. RDNZ, our 140 patient organisation members, and our community are eager to ensure our collective voice plays a crucial role in making positive changes,” says Lisa.