Soliris on the LSDP
May 8, 2014
THE atypical haemolytic uraemic
syndrome (aHUS) Patient Support
Group Australia (aPSGA) is calling
on the government to accept Soliris
(eculizumab) manufacturer Alexion
Pharmaceuticals Australasia’s
proposition to allow immediate
compassionate access to the drug
for aHUS patients through an Early
Access Program at a meeting today.
aPSGA has also called on
the government to overrule a
Pharmaceutical Benefits Advisory
Committee (PBAC) decision to list
Soliris under Section 100: Highly
Specialised Drugs Program for
supply through private and public
hospitals, rather than through the
Life Saving Drugs Program (LSDP).
Roughly 60 to 70 Australians have
the disease, with the estimated
cost of Soliris around US$480,000
per adult patient, aPSGA said.
In its March meeting, the PBAC
said there were difficulties with
obtaining clinical data for the drug’s
use for aHUS patients given the
rarity of the disease, but that there
was a high clinical need for the
treatment in aHUS.
It recommended that it
be available through special
arrangements under section 100,
but this was an issue as treatment
for aHUS was indicated for lifetime
use, whereas under section 100,
patients would be removed after a
‘flare’, aPSGA said.
Soliris for the treatment of aHUS
was rejected by PBAC in March
2013 for listing under the LSDP.
The Department of Health had
not responded to a request for
comment at time of publication.
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