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

agreed this was done. Secondly, PHARMAC developed an application process
which was quite complicated to naturally limit the numbers of applications. The
following views were expressed about the application process. This was
described in the literature as rationing by frustration (Higgins & Ruddle, 1991).
and
Well we wrote up a criteria and a policy, which is now publicly
available on the website, but in those days it wasn’t. We treated it as
restricted information, sort of said, well let’s keep it hush hush so
people wouldn’t know about it until they applied. The only people
who applied who were people who heard about it on the grape vine,
or they had made an application or sometimes people would write to
us about it.
It [the application process for Community Exceptional Circumstances
claims] is reasonably onerous, because of the demands of the
[Community Exceptional Circumstances] Panel or information
actually can sometimes be quite high…it isn’t ticking boxes you
actually have to provide the clinical information but there is a barrier
there for the doctor[s] in terms of paper work. (Interviewee A)
This person also spoke about how it was personally difficult to make Community
Exceptional Circumstances decisions despite the best evidence and advice
from the Community Exceptional Circumstances Panels. When Interviewee A
was asked to give examples, this is what was said:
and
The Gleevec example, treatment for myeloid leukaemia was a very
personal example. So I was meeting with individuals who had the
disease and were going to die. They might like not to die
but…everybody dies… but they were looking for a delay … but for
how long?
I recall with multiple sclerosis and Alzheimer’s. These were hard.
Alzheimer’s particularly, not because we didn’t think the drugs were
163