The
decision this week by the Scottish Medicines Consortium (SMC) to approve another drug for
cystic fibrosis
underlines how the work the Cystic Fibrosis Trust does here in Scotland is
making an impact. As Public Affairs Officer, ensuring access to new medicines
is a part of my job that may appear a bit boring at first, but is an essential
and enjoyable part of my work and allows the Trust to make the representation
on behalf of the CF community.
With
the help of clinical CF staff across Scotland, I am able to contact patients who
are on the trial for the new drugs being assessed. It is crucial that the
patient experience and that of their families is captured in papers we submit
to the SMC as it could be the difference between a Yes and a No recommendation.
Without your help drugs like Kalydeco and Cayston may never have got to clinics,
so I am extremely grateful. I have also made a few friends in the process! As
someone with cystic fibrosis I understand how isolating it is, so to speak to
you and hear your stories is always a pleasure.
The
recent Cayston decision fell under changes made last year to the way medicines are
appraised to improve access for those at end-of-life or with a rare disease. A
Patient and Clinician Engagement meeting (PACE) has been introduced where it is
likely a drug may not be approved. Cayston went through this process and we
found it to be valuable, particularly as we were able to talk about living with
cystic fibrosis direct to people involved in making decisions around new
medicines.
The
changes to the SMC will be up for review this year and I shall feed in to that
process but in the meantime I will continue to ensure that patients with cystic
fibrosis are represented when new drugs come online. Please feel free to leave a
comment or get in touch with me yvonne.hughes@cysticfibrosis.org.uk.
Fantastic stuff Yvonne. Well done x
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