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

effective or the benefit was very great, but because you have very
emotional families. That did affect me personally. (Interviewee A)
‘A’ also indicated that PHARMAC seldom exceeded the Community Exceptional
Circumstances budget of $3 million and kept the numbers of patients on
Community Exceptional Circumstances subsidy closely monitored.
and
There was an amount allocated in the budget. I recall it was $2-3
million and we tracked it over time. It wasn’t normally a problem
because we very seldom went over the level. The doctors who were
making the decisions weren’t persuaded by that [budget] anyway.
No, [affordability] wasn’t a major factor. I can remember once it got
close to the level and we went to the Board and asked for it to be
increased and they increased it… over time it did grow a bit.
(Interviewee A)
Interviewee ‘B’: “Exceptional Circumstances can be seen as the prize”
Interviewee ‘B’ gave a clear description of how PHARMAC saw the Exceptional
Circumstances policy, describing the policy as a method of subsidising
extremely rare conditions. This idea of ‘real rarity’ was clear in Interviewee ‘B’s
mind as a numerical cut off point. This person described claimants who met the
rarity test as ‘winners of the prize’ and those who did not meet the rarity test
were ‘the losers.’
and
If there is something very rare it will likely get funded but if it is only
quite rare then it is likely that it will not be funded under EC
[Community Exceptional Circumstances]...so with EC you win [get
funding approved] for real rarity…you however lose if you’re not quite
so rare.
I think one of the great difficulties…that EC can be seen as the ‘prize’
for having a rare condition. I mean that if you have a rare condition
and there is a standard treatment for it, then it probably should be on
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