Te Pātaka Whaioranga – Pharmac is initiating a
consultation today, seeking feedback on a proposal to fund
of risdiplam (branded as Evrysdi) for people with the rare
genetic disorder spinal muscular atrophy, who meet the
eligibility criteria.
Pharmac’s director of
operations Lisa Williams says Pharmac is thrilled to be
taking the next step towards progressing a second treatment
for those with spinal muscular atrophy for funding, with nusinersen
(branded as Spinraza) funded from 1 January
2023.
“Risdiplam 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.
“Having a treatment available that can be taken orally,
from home, and once a day has major benefits to improve
access for those who need it.”
“We have received
clinical advice from our Rare Disorders and Neurological
Advisory Committees along with our Pharmacology and
Therapeutics Advisory Committee (PTAC) recommending that we
fund risdiplam. The eligibility criteria we are proposing
are based on the expert advice we have received and clinical
data available, similar to the criteria for nusinersen,”
says Ms Williams.
The consultation is 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.
“As well as seeking feedback on the
funding of risdiplam, we are also interested in feedback on
how community distribution of risdiplam could be managed. If
the decision is approved, we will be working closely with
the supplier, Roche and our colleagues across the health
sector to plan for the implementation of
risdiplam.”
If approved, funding would start from 1
May
2023.
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