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Te Pātaka Whaioranga – Pharmac has initiated two
consultations today, seeking feedback on the funding of two
different medicines that we’ve heard are very important to
many New Zealanders. One is for funding nusinersen (branded
as Spinraza) for people with the rare genetic disorder
spinal muscular atrophy, and the other is for funding
adrenaline auto-injectors for people at risk of
anaphylaxis.
“Following our budget increase in May
2022 we are working our way through our options for
investment list,” says Pharmac’s director of operations
Lisa Williams, “We are really pleased to be in a position
to progress the funding of these two treatments, alongside
many more.”
Nusinersen (branded as
Spinraza)
“Nusinersen has the potential to make a
substantial difference to the lives of young people in New
Zealand living with spinal muscular atrophy and for their
whānau and support networks too,” says Ms Williams.
“This would be the first medicine that is publicly funded
for those in New Zealand living with this
condition.”
Pharmac has reached a provisional
agreement with medicine supplier Biogen to fund nusinersen
for people with spinal muscular atrophy.
“We have
been actively working towards this step in the funding
process since receiving positive recommendations for
funding(external link) nusinersen from both our Rare
Disorders Advisory Committee and the Pharmacology and
Therapeutics Advisory Committee. The evidence is clear that
nusinersen can benefit people with spinal muscular atrophy,
so we are pleased to have reached an agreement with
Biogen.
“I want to acknowledge the time that many
people have put into advocating for those living with spinal
muscular atrophy and to those who have shared their own very
personal stories with us. I am very heartened share the news
that we are proposing to fund a treatment,” says Ms
Williams.
We are welcoming feedback on the proposed
funding of nusinersen until Monday 24 October 2022. If
approved, funding would start from 1 January
2023.
Adrenaline auto-injectors
Pharmac is
also considering, in a separate consultation, funding
adrenaline auto-injectors, for anyone who has had a previous
anaphylaxis reaction or is deemed to be at significant risk
of anaphylaxis.
“We estimate 12,000 people would be
able to access funded adrenaline auto-injectors in the first
year of funding, increasing to 17,000 people per year after
five years,” says Ms Williams.
“We received an
application to fund adrenaline auto-injectors in 1997,
making it one of the longest held applications,” says Ms
Williams. “Pharmac has re-assessed the funding application
on a number of occasions. Today, with updated clinical
advice and a competitive pricing offer, combined with our
recent budget increase, we are in a position to fund
adrenaline auto-injectors. We have heard from advocacy
groups and clinical experts that the funding of adrenaline
auto-injectors would positively impact on the quality of
life for individuals, their caregivers and
whānau.”
“We included adrenaline auto-injectors
in Pharmac’s 2021/22 Annual Invitation to Tender, which is
where we run an open and fair procurement process. As the
tender process is still in progress, the brand name, pricing
and timing for this change are still to be determined. What
we are seeking feedback on, at this time, are the proposed
access criteria for adrenaline auto-injectors,” explains
Ms Williams.
Feedback on the proposed funding
adrenaline auto-injectors is due by Tuesday 11 October
2022.
Both consultations are available on the Pharmac
website for anyone wanting to have their say.
“Consultation is a very important step in our process,”
says Ms Williams. “It’s how we check that the people who
will get the most benefit from the medicines will be able to
access them. If approved, we will also be working closely
with our colleagues across the health sector to plan for the
implementation of nusinersen and adrenaline
auto-injectors
Proposal
to fund adrenaline
auto-injectors
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