Christmas Miracle For Cystic Fibrosis Community

Pharmac announces agreement to fund Trikafta* for those
aged 6 years and over

After two and a half years of
advocating for public funding of Trikafta , Cystic Fibrosis
NZ (CFNZ) is absolutely thrilled that Pharmac and Vertex
have reached a provisional agreement to fund Trikafta for
people with cystic fibrosis aged 6 years and over who are
eligible.

Lisa Burns, Chief Executive for CFNZ says,
“There just aren’t the words to convey what this means
for our community. Funding Trikafta will bring life-changing
benefits to people with CF, their families, whānau, the
wider community, and our health system.”

In August
2022, Pharmac acknowledged that Trikafta could give people
with CF benefits equivalent to 27 more years at full health
when compared to current supportive treatments, with real
world data reinforcing that Trikafta reduces the risk of
hospitalisations, lung transplants, and premature death.
People with CF can now thrive and have a future where they
live life on their own terms.

Burns continued,
“Today is a major milestone that will deliver access to a
medicine which will prolong the lives of hundreds of Kiwis
with CF. New Zealand will now join the more than 30 other
countries where Trikafta is funded. Our community no longer
need to leave Aotearoa to access this medicine, and those
who have already left can now come home to be with their
families and whānau.”

Vertex applied to Pharmac in
July 2021 to have Trikafta funded in New Zealand for people
with CF aged 6 years and over. “The last 16 months has
been a rollercoaster for our CF community. But this latest
news means there is now light at the end of this tunnel,”
said Lisa.

Wellington mum, Nicci Hughson whose 10 year
old daughter Nora will be eligible for Trikafta once it’s
funded said “We are totally overwhelmed by the news;
we’d given up on thinking Trikafta would be funded in New
Zealand in the next few years. Nora is ten, and we’d
talked about the prospect of moving overseas to get access
to Trikafta if it wasn’t funded by the time she turns 12.
It’s a huge relief knowing that our little girl will have
fewer chest infections, hospitalisations, less treatment,
her sinuses could improve, meaning she’ll get more sleep.
Knowing she will live for longer, and feel better while she
does that. Nora is old enough to know what CF is, she knows
she’s different, and knows that without medication like
Trikafta, she might not live as long as her
friends.”

Cystic Fibrosis NZ wants to acknowledge
the collective effort of the CF community for the
extraordinary amount of commitment and courage in sharing
their very personal experiences with the public, Government,
Pharmac and Vertex to help get this over the
line.

“An incredible amount of resilience, aroha and
mahi has gone into campaign. The news will be overwhelming,
and it will take time for the reality to sink in about what
it means for people with CF and their families, and the
additional years they will now have ahead of them,” said
Burns.

“Trikafta should now be the trailblazer to
show how modern medicines like this can be funded in New
Zealand. We cannot forget those who are still desperately
waiting for life-saving medicines. We need to urgently work
towards a framework that delivers a fair and equitable
system where funding medicines is seen as an investment
rather than a cost.”

“CFNZ and our CF community
have held on tight to the hope that one day this would
happen and now we have the Christmas miracle we hoped
for.”

*Trikafta is a medicine that treats the cause
of cystic fibrosis for around 90% of those with the
condition

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