A major campaign’s being launched at Parliament this afternoon to call for the rights of 300,000 New Zealanders
struggling to navigate daily life with a rare disorder. Front and centre of the Fair for Rare NZ campaign is an immediate call for the government to commit establishing a long overdue New Zealand National Rare
Disorder Framework, a basic requirement most other countries already have in place.
“For many of the 6% of New Zealanders living with a rare disorder every day is a fight, with many feeling neglected and
invisible” says Rare Disorders New Zealand Chief Executive Lisa Foster. “Currently their healthcare is fragmented,
there’s little cohesiveness in services, there’s inequitable access and high levels of stress. This leads to high
uncertainty in all aspects of their life and often no clear pathway for diagnosis, treatment and care. Many vulnerable
patients continue to fall through the cracks. As a country with a keen sense of fairness it simply doesn’t make sense to
have no formal policy or framework in place to support them”.
Rare Disorders NZ says New Zealand lags behind almost every other developed nation by not providing a basic national
framework or set policy to support these patients and ensure access to cohesive healthcare and simple fairness, so that
the type of disease does not detrimentally affect access to care and supports. Rare Disorders NZ and its 140 support
groups are now calling for the immediate establishment of a New Zealand National Rare Disorder Framework to bring New
Zealand into line with other countries.
“Thirty-six countries, including Australia, the UK, EU countries and many in Asia and South America all rightly
recognise the importance of implementing a National Rare Diseases Framework, strategy or policy to ensure no-one is left
behind” says Foster. “Yet here in New Zealand, a country known for its empathy and fairness, we are falling behind. New
Zealand is one of only five nations to have no commitment to address these challenges. However, we have the opportunity
to do the right thing and develop a national rare disorder framework to change lives. The social, health and economic
cost of ignoring this issue is too high a price to pay and must be resolved”.
Rare Disorders affect 6% of New Zealand’s population – half of whom are children. A condition is classified as a rare
disorder if it affects less than 1 in 2000 people. There are around 6000 known rare diseases and disorders, most are
genetic and are either inherited or occur randomly. They range from more well-known diseases such as the genetic lung
disease Cystic Fibrosis, muscular dystrophies and Huntingdon disease, to ultra-rare diseases like Progeria – a genetic
disorder which causes children to age rapidly.
A survey of 288 patients and whanau carried out by Rare Disorders NZ and its support groups last year found almost 70%
felt healthcare professionals in New Zealand did not know about their disorder and its consequences. 31% felt they were
often unable to overcome their problems, 63% felt the costs associated with their rare disorder were high, 80% had
experienced a decrease in income with 30% unemployed, and 38% had experienced a hospital admission in the past 12
months.
Hutt Valley mum Kerryn Hailwood has experienced the pain and trauma of not knowing who to turn to for help. She is mum
to not just one, but two sons who have been diagnosed with separate rare disorders, Usher Syndrome Type 3 and AUTS 2
Syndrome.
“We need a comprehensive National Framework up and running right now” says Kerryn. “Currently patients and parents like
me are having to jump through sixty different hoops, for months and often years, to get the diagnosis, help and support
we so desperately need. If I had lived overseas I feel the structure and supports would have been in place more readily
for us. It’s too late now for my children to receive an early, more timely diagnosis but we need this framework for the
next generation coming through and for those suffering right now”.
“We see the struggles patients and their families face on a daily basis” says Foster. “Many are at their wits end,
struggling to receive a diagnosis or gain access to medications, treatment, care and support. Many face the frustration
of feeling they have nowhere to turn for answers and certainty. A National Framework would be of immediate help in
identifying positive solutions to reduce the costs of rare health conditions on both individual patients and the wider
health system, by addressing early and accurate patient diagnosis, to lead to clearer health pathways and reduce the
burden of mental stress on families, enabling them to live fuller lives and participate in work and the community.”.
Today’s Fair for Rare NZ Rare Disorders NZ campaign launch will take place at 2pm in the Grand Hall, Parliament
Buildings. The speakers will be Dr Liz Craig MP, Rare Disorders NZ Chief Executive Lisa Foster and also Nicola Swan who
is a parent of a child who died of an undiagnosed rare disorder at the age of five. Rare Disorders NZ will also formally
announce the 7 strategic priorities which support groups have identified as vital to reduce the high uncertainty and
system barriers within the current health system. The launch marks Rare Disorders NZ’s 20th birthday as well as
International Rare Disease Day 2020.
Countries with Rare Disease Policies
Information taking from Rare Disease Policies in Asia – ‘From where we stand to where we are heading?’ Report By: ANSEA
CONSULTANTS PTE LTD April 2019
Countries with National Plan, Strategy, Policies or Acts (36 countries)
US, UK, Australia, France, Germany, Italy, Portugal, Spain, Bulgaria, Czech Republic, Lithuania, Slovenia, Slovakia,
Cyprus, Latvia, Netherlands, Belgium, Austria, Sweden, Hungary, Croatia, Estonia, Luxembourg, Malta, Finland, Denmark,
Argentina, Colombia, Brazil, Hong Kong, Chile, Peru, Japan, South Korea, Taiwan, Philippines.Countries Progressing Policies (7 countries)
Romania, China, Singapore, Malaysia, Thailand, Vietnam (has a Rare Disease Committee), India.Countries without Policies (5 countries)
Greece, Mexico, Poland, Indonesia, New Zealand.