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

and
Now some people can say that’s fine but if you want this you can buy
it [yourself].
You can go down to Social Welfare and say “The doctors won’t give
me this but I need it,” and they will look at it too. So there are two
views of what is reasonable. The trouble comes when we, the
Community Exceptional Circumstances people, say you don’t need it
and Social Welfare agrees with the patient and says you do! Which
‘reasonable’ do we take?
This difference was further explored with further questioning.
Q Well how would you resolve these differences? I mean here are two
government agencies saying opposing things about what is
reasonable.
A As a doctor I am entitled to say what I think is reasonable. They will
(Interviewee C)
have to accept that because I was asked to make…to rule on all
these applications.
The rarity criteria, being described by PHARMAC as less than 10 cases
nationally, are one of the cornerstone criteria for the Community Exceptional
Circumstances policy. It was important to explore with ‘C’ how the number was
arrived at and why it was chosen.
Q Where did the number 10 come from as the definition of rare?
A Well I just can’t remember that… it was the RHA days… or was it the
Department before the RHA? … well if there are less than 10 it’s got
to be pretty rare. I don’t think there was anything more to it. But we
have stuck to 10 all these years.
Q Was there any research or did the HFA or PHARMAC apply any
models, any test hypotheses to see if this number 10 did in fact
mean…well rare.
A No…nothing like that…I just said 10 and 10 was it.
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