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

the pharmaceutical schedule. The original idea was to help those
amazingly rare things … the things nobody had a clue about.
(Interviewee B)
There was a strong link made between rarity and the amount of money
available to PHARMAC for Community Exceptional Circumstances subsidy
claims. The question was put to ‘B’ about the connection between rare and the
number 10.
and
We said ok [the number 10]…this is a good place to start with rare…
there was nothing more in it than that. We have just said well 10 is
rare.
Well, you can have whatever number you want to have…as a
number…there is a budget of $3 million and with the current criteria
we manage along pretty well on that. Sometimes we go over… but
mostly I think we are under that. I mean if we increased the number
we would obviously have to increase the budget. This is the same
argument we get into with the PHARMAC budget…you can have
whatever you like but it has to be paid for and we really have to stick
to that. (Interviewee B)
‘B’ maintained that exceptional did not mean outstanding, unbearable or
incomparable, it meant rare as in infrequently encountered. B gave the
following example:
In New Zealand we do not consider a person’s case exceptional if
she has a condition and also has an unhappy set of personal
circumstances, for example she is poor and her husband has died…
I remember when Herceptin first blew up, there was a …woman
whose child had leukaemia [cancer] and now she had HER 2 positive
breast cancer and her husband had left her… and she was saying
that her life was exceptional. There is no doubt that she was a very
sad case…but…there is nothing exceptional about her case. I mean
if we think about fairness, why she should take precedence over
somebody who’s got three nice children…and the husband is
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