How does the operation of PHARMAC's 'Community Exceptional ...

claimants (and unsuccessful drug company tenderers) could not know under
which criteria their applications were or were not successful.
One contributor to the literature (Seddon, 1999) and a past or present Health
Minister interviewee, pointed out that simply being explicit and open about
decisions will not necessarily satisfy people that the right decisions were made.
The media study identified Community Exceptional Circumstances claimants
who were refused access to medication, who rightly or wrongly believed their
lives were being unnecessarily shortened by PHARMAC’s decisions. The main
reason for their complaint was that they did not really know why these micro-
level rationing decisions were made.
This same complaint was also made by drug companies and their
representative body Medicines New Zealand, who sought to have new drugs
listed by PHARMAC for subsidy. PHARMAC’s approach to openness was also
discussed by the NZORD. They stated that the PHARMAC’s panel members
do not listen to NZORD clinical experts or evidence of experience in treatment
regimes from other jurisdictions. This lobby group complained that PHARMAC
unreasonably delayed decisions and made unnecessary requests for
information when the same medicines were accepted and listed in other
comparable countries, for example Australia.
Curiously, evidence was presented in the key informant interviews and in the
media stories that pharmaceutical companies sometimes encourage patients
and their doctors to make Community Exceptional Circumstances claims about
medicines that are available in Australia. This begins PHARMAC’s assessment
process and is a way of medicines becoming discussed in the media. This is an
example of manufacturing companies not being open about their motives or the
financial implications of their gaining favourable decisions.
In Daniels and Sabin’s (2008) ‘Accountability for Reasonableness’ framework,
they described the need for openness as an important element of a fair
process. This element referred to the need to be public about the reasons and
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