Today’s release of Aotearoa New Zealand’s first Rare
Disorders Strategy marks a significant moment for people
living with a rare disorder, their whānau, patient support
groups and patient advocates who have been calling for this
for decades.
“The significance of having an official
Rare Disorders Strategy cannot be underestimated. This is
huge for the rare disorder community, as it means first and
foremost recognition and acknowledgement,” says Rare
Disorders NZ Board Chair James McGoram.
“It marks
the first time we have high level documented intention to
improve the health and wellbeing of this vulnerable
population group”.
For over 20 years Rare Disorders
NZ, along with many other stakeholders in the rare disorder
community has been calling for an official Rare Disorders
Strategy to direct government entities on how to respond to
rare disorder cases. Following a recommendation from the
independent Pharmac Review in 2022, then Minister of Health,
Andrew Little, announced that he had directed Manatū Hauora
| Ministry of Health to develop a strategy for rare
disorders.
After two years under development and with
significant input from Rare Disorders NZ, the Strategy was
finally released today.
“We are really pleased that
the Strategy now puts people living with a rare disorder on
the radar of policy makers. Their needs will finally be
taken into consideration in future health system
improvements and investments,” says Chief Executive of
Rare Disorders NZ Chris Higgins.
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There are over 7,000
known rare disorders, and while each rare disorder may only
affect a small number of people in New Zealand, collectively
rare disorders are estimated to affect 300,000 people in New
Zealand.
Up until now the health system has had no
directives on how to manage patients presenting with unusual
co-presenting symptoms, leaving many patients feeling
misunderstood and bounced around in the health system.
Almost one in five rare patients reported waiting over 10
years for a diagnosis according to Rare Disorders NZ’s
most recent survey, and over half reported feeling that
communication and information exchange between different
service providers was poor and that professionals are poorly
prepared to support them.
Rare Disorders NZ, as the
only umbrella organisation supporting all people and their
whānau living with a rare disorder, has been closely
involved in the development of the Strategy as a member of
the Reference group. Their insistence that the Strategy
should be informed by lived experience led to webinars being
set up to ensure engagement with patients, support group
leads and health professionals with expertise on rare
disorders. Te Aka Whai Ora and Rare Disorders NZ also worked
together to ensure the voice of whānau Māori living with a
rare disorder was captured.
“The Strategy is not
perfect and there are some significant omissions that we
will need to continue to draw attention to, such as the need
for a separate assessment pathway for rare medicines, and
acknowledgment that rare disorders impact every aspect of
life, not just health. But we believe the Strategy is a good
foundation to start improving service delivery for people
living with a rare disorder and we look forward to being
part of the implementation process,” says
Higgins.
“The Strategy is an important first step,
but real change will only happen when systemic improvements
are implemented, and we will certainly be monitoring this
closely.”
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