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

to considerable suffering which Mike had endured during his life. However,
much of this suffering was as a result of the epilepsy and not for the lack of the
drug he was applying to PHARMAC for a subsidy.
Dr. Peter Moodie, the Medical Director of PHARMAC said that the Community
Exceptional Circumstances policy was there for extremely rare conditions. He
said that a panel of New Zealand medical experts examined each claim and
made their decision on a case by case basis. Moodie stated that epilepsy is not
rare (i.e., 10 cases or less in New Zealand at any one time) and this is why Mike
was turned down for the Community Exceptional Circumstances claim.
Case 3: “King refuses to step in for drug” (Christchurch Press 05/05/04)
In this story, Shirley Reid was suffering from motor neurone disease. This is a
progressive degenerative neurological disease which ends in a slow and
debilitating premature death. Shirley and her husband petitioned the Hon.
Annette King, who was the Minister of Health at the time, to pressure
PHARMAC to fund a new drug which promised to extend her life. Shirley said
that the drug should also be available for other motor neurone disease
sufferers. Shirley had been turned down for a Community Exceptional
Circumstances subsidy for the new drug. The panel of experts refused to
recommend listing the new drug on the Community Pharmaceutical Schedule
because in the committee’s opinion the cost of the new drug was too high for
the limited benefit it offered.
Health Minister Hon. Annette King said that she was sympathetic to Shirley’s
plight but would not intervene in PHARMAC’s decision making. She asked the
patient to apply under the PHARMAC rules for a Community Exceptional
Circumstances subsidy. This was not good advice because she had already
applied to PHARMAC for a Community Exceptional Circumstances and been
turned down. The Minister was also wrong to suggest this course of action
because motor neurone disease is not a rare condition, by PHARMAC’s
definition of rare and such a claim would fail. Shirley’s husband expressed his
outrage and frustration and powerlessness against PHARMAC. He described
the PHARMAC Community Exceptional Circumstances system as ‘uncivilised’.
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