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Yet again, Pharmac has raised the hopes of Kiwis with
cystic fibrosis only to shatter them.
After months of
what appeared to be encouraging progress, Cystic Fibrosis NZ
(CFNZ) has been advised by Pharmac that, following its
September medicines’ ranking process, Trikafta has not
moved up the Options for Investment (OFI) List.
The
outcome of this is that Pharmac is not in a position
to move forward with funding Trikafta at this time,
and that funding is unlikely to occur without
changes to the information at hand.
Lisa
Burns, Chief Executive for CFNZ says “We are shocked and
outraged at this decision from Pharmac. This highlights our
significant concerns about what is going on within Pharmac,
their processes, decision criteria, and how these decisions
are being communicated. We have been left confused and
don’t have the words to convey our deep disappointment for
our CF community.”
In August 2022, Pharmac released
the record of advice from its Pharmacology and Therapeutics
Advisory Committee (PTAC) and published a summary of its
Technology Assessment Report (TAR) containing its assessment
of the cost-effectiveness of Trikafta.
As part of that
release, Pharmac acknowledged the major benefits that
Trikafta offers, not just to the health system but an
extension to life expectancy and quality of life, estimating
that Trikafta would provide benefits equivalent to
27 more years at full health when compared to
current treatments.
Pharmac also stated that
it had already re-ranked Trikafta on its Options for
Investment (OFI) List and was continuing commercial
discussions with Trikafta’s supplier, Vertex, to try and
reach an agreement that would enable funding.
However,
Pharmac has now advised CFNZ that Trikafta was re-ranked
again in September, but it has not moved high enough up the
OFI List for it to progress to funding at this time. Pharmac
has advised CFNZ that changes would be needed to one or more
of the factors for consideration before Trikafta could be
re-ranked again and have the chance to move further up the
OFI List.
These have been outlined as:
- More
information that could change Pharmac’s Factors for
Consideration - A change in the price offered by
Vertex - Additional budget uplift.
Lisa
said “The failure of Trikafta to move up the OFI List to
progress funding makes it very clear that the Pharmac
process does not work for modern medicines. Despite all
available evidence, assessments and reassessments,
validation by their Clinical Experts, we’re going round in
circles with unnecessary delays due to poor process, and
decision making.”
“We are utterly thrown by
Pharmac’s decision not to prioritise funding Trikafta. It
defies logic that a medicine with such positive impact
doesn’t make it up the ranking list for funding. The
current average life-expectancy in New Zealand is 31 yet
Trikafta could give Kiwis with CF an additional 27 years,
and quality of life. It doesn’t make any
sense.”
Pharmac stated in its August release that
they don’t just look at how much, in dollar terms a
medicine costs, that they also consider the health benefits
to the person taking the medicine and what the benefits
would be to the healthcare system. This is inconsistent with
the decision advised to CFNZ where cost appears to be a
barrier in moving the application forward.
“Trikafta
is now available in more than 30 countries around the world.
Pharmac has had access to the same information and evidence,
in fact they’ve had the benefit of all the additional
worldwide clinical data provided by Vertex, so are they
implying that all those countries got it wrong?” said
Lisa.
Trikafta would be a highly cost-effective
investment. Independent work commissioned by CFNZ for
2019/20, calculated the approximate annual social, economic,
and financial cost of CF to be $116m which
was shared with Pharmac. The estimated annual cost to
fund Trikafta would be significantly less than
$60m.
Pharmac has advised CFNZ that “the
door is not closed” and that “Trikafta is a medicine we
want to fund”. But, even if changes can be made to enable
Trikafta to move up the OFI List, Pharmac has advised that
this will not happen before December
2022.
“In the meantime, those who can will
make the decision to leave NZ, their home, families,
education, and careers to access Trikafta or another CFTR
modulator overseas. Others will desperately seek access to
Trikafta by any means they can or try to access unregulated
alternatives, potentially putting their health at further
risk while simply trying to stay alive,” said
Lisa.
New Zealand’s current medicines funding system
is out of step with the rest of the world, cost focused and
obsessed with procuring cheap drugs at the expense of health
outcomes. The perception that the Pharmac model is the envy
of other countries, is simply not true, it’s an example of
what not to do and their model hasn’t been adopted
anywhere else in the world.
“This game of chance,
playing with the lives of our CF community is unacceptable.
We need a medicines framework that recognises funding
medicines like Trikafta is an investment in the people of
New Zealand and our health system. Until we do, thousands of
sick and vulnerable Kiwis will continue to experience
needless suffering and early death.”
“CFNZ and our
CF community remains relentless in our determination to get
Trikafta funded in New Zealand. Kiwis deserve better
than this, HOPE shouldn’t be our only option for a
medicine’s
strategy.”
© Scoop Media
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