Pharmac-initiated Lengthy Review A Waste Of Valuable Time And Resources, Says Rare Disorders NZ

Rare Disorders NZ is very concerned that Pharmac will not
extend access to life-saving medicines for children with
rare disorders in line with child cancer patients under Rule
8.1b, despite Pharmac concluding from its own review the
real impact on treatment and health outcomes this rule has
for patients.

Pharmac announced back in November 2022
that it will be reviewing rule 8.1b of the Pharmaceutical
Schedule under which children with cancer are able to access
any new paediatric cancer medicines their clinician deems
most suitable for their condition, even if it has not yet
been assessed by Pharmac. The review was initiated by
Pharmac due to concerns around the increasing costs of new
medicines, and that other groups, such as children with rare
disorders, do not have the same funding access to
medicines.

Pharmac finally announced on Friday the
review had concluded and the rule will remain as it is, due
to the overwhelming feedback they received about how
valuable it is as part of the clinical pathway for
patients.

“We are frankly outraged that Pharmac has
wasted valuable resources on this lengthy review, only to
conclude the obvious – that the rule is essential for
these patients’ treatment and health outcomes,” says
Chief Executive of Rare Disorders NZ, Chris
Higgins.

“Pharmac should be
solutions-focused and channeling its resources into how to
expand access to medicines. As this review found that having
rapid access to life-saving treatment is essential for good
health outcomes, the logical next step should be expanding
the rule to cover other children, such as those with rare
conditions. We are talking about a very small number of
children, given only 5% of rare disorders have an available
treatment,” says Higgins.

“It must be
up to the clinicians’ discretion to decide whether a
medicine is required for any condition, and Pharmac should
be responsible for procuring it for the best possible price,
not dictating whether it should be purchased at all.
Children risk missing out on the medicines they need as a
result of bureaucratic rather than clinical decision
making.”

New Zealand already ranks last out of 20
comparable OECD countries for access to publicly funded
modern medicines. According to the independent Pharmac
Review, Pharmac’s spending on medicines for rare disorders
is less than 1% of the pharmaceutical budget. Around half of
all those affected by a rare disorder are
children.

“Given Pharmac’s capacity issues it
would have been a better and more productive use of their
resources to carry out a much needed and well overdue review
of the NPPA scheme. This is currently the only pathway of
hope for people in need of a medicine not funded by Pharmac,
yet there is a lack of clarity around this process and too
many inconsistencies around the decision-making. New
Zealanders deserve better, and Pharmac needs to step up its
game.”

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