The New Zealand Government’s support of vulnerable people throughout the COVID-19 pandemic should be applauded - but more should be done to help the 6% of the population living with a rare disorder.

“To better support people with a rare health condition, especially during a pandemic, there needs to be acknowledgment of the specific challenges they face as a collective group and a willingness to act,” says Rare Disorders NZ (RDNZ) Chief Executive Lisa Foster. “With clear recognition as a health priority, practical actions can be implemented for this vulnerable population.”

RDNZ connects people, experts and evidence with the aim of supporting the government in making the changes necessary to help the rare disorder community through their health journey.

“Removing barriers can benefit the whole country and wider society plus enable equity for further marginalised groups who face disproportionate vulnerabilities such as Māori and Pasifika,” says Lisa.

While the current reforms to the health system, such as the Health and Disability Systems Review are positive, these reforms miss the fact there are crucial differences between people living with a chronic illness and those with rare disorders. Access to disability support is on a categorical basis; if you do not fit the category you cannot have it, and rare disorders often do not fit.

“International experience shows that if the rare community isn’t actively acknowledged and consulted during reforms, then this ignorance of need will lead to more inequities within the health system,” says Lisa.

People living with rare disorders are a public health and social priority in other OECD countries including Australia and the UK as this makes economic, social and moral sense. Specific challenges that face this group include delayed or inaccurate diagnosis, difficulty accessing care, barriers of access to innovative medicines and lack of clinical training. For people affected and their families, it can be scary and isolating; for an economy it represents a significant direct and indirect cost.

“This global Rare Disease Day, 28 February 2021, we’re asking everyone to become “Rare Aware”, and support the 1 in 17 Kiwis who have a rare disorder by getting behind our campaign for recognition and change,” says Lisa.

RDNZ is the only national organisation supporting all New Zealanders who live with a rare condition, their whānau and carers. Along with the collective of 140 rare disorder support groups, RDNZ offers a place of belonging and connection, and a platform to unite efforts to deliver better health outcomes for those with rare disorders.

RDNZ is asking New Zealanders to help them gain acknowledgement from the Government of the need for a New Zealand National Rare Disorder Framework. A petition to parliament - “Reform our healthcare system to include all New Zealanders living with a Rare Disorder” – was launched last year by Sue Haldane, supported by RDNZ.

Sue’s daughter Lizzie has the lifelong, complex condition 22q Deletion Syndrome, also known as Velo Cardio Facial Syndrome. Sue’s petition urges the Government to acknowledge the challenges faced by people living with a rare disease, and the inequity within the current system. New Zealanders have until 17 March to sign the petition and add their voice to those asking for a commitment to develop a New Zealand National Rare Disorder Framework.

“RDNZ is meeting with the Minister on 1 March to discuss the opportunities available to better support the rare disorder community, as well as the sustainability of our organisation,” says Lisa.

Last November, RDNZ supplied a briefing to incoming Health Minister Andrew Little, which detailed the benefits that would result from a rare disorder framework in New Zealand.

Minister Little told the NZ Herald last month that he is "sympathetic" to families dealing with rare disorders, and remains committed to ensuring they received a good level of support. However, the reality is that as the peak body for this group RDNZ has had its funding slashed by half last year - to $60,000 per annum.

"Closure is a real fear. We have no guarantee of surviving these next few years - it's not a very confident picture," says Lisa.

“RDNZ and our collective of rare disorder experts are looking forward to collaborating with the Minister to ensure sustainable, positive change for this significant community.”

About Rare Disorders NZ

Rare Disorders NZ is the connector hub and collective voice for patients and families affected by rare disorders. Rare health conditions affect 6% of New Zealanders, around 300,000 people.

RDNZ chief executive Lisa Foster is available for interview.

lisa.foster@raredisorders.org.nz; (04) 385 1119 (9.00am-5.00pm, Monday-Thursday)

RDNZ are also working with family members dealing with rare disorders, including Sue Haldane, who can talk about the issues that they face. Full details are available on request.

Key dates

Rare Disease Day - 28 February 2021

Petition to Parliament closes - 17 March 2021

Sue Haldane’s petition to Parliament: “Reform our healthcare system to include all New Zealanders living with a Rare Disorder”

https://our.actionstation.org.nz/petitions/reform-our-health-system-to-include-all-new-zealanders-living-with-a-rare-disorder

RDNZ Briefing to incoming Health Minister Andrew Little

https://raredisorders.org.nz/about-us/news/briefing-to-incoming-minister/

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