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

and
PHARMAC is not above rationing by confusion, procrastination or
bewilderment. Rare disease it can be…”too small, too few, too
hard…too bad!” (Interviewee G)
This is seen by NZORD as a form of rationing the available resources for
Community Exceptional Circumstances claims because five or six claims for the
treatment of extremely rare disorders could deplete the whole Community
Exceptional Circumstances budget of $3 million in one year. This means, as
Interviewee ‘B’ stated, the criteria for Community Exceptional Circumstances
subsidy are more for managing the allocated budget than deciding the claims
on the basis of procedural fairness of the criteria.
The interview explored what is meant by fairness in the context of having a very
rare disease and requiring expensive treatment funded by the state. ‘G’ felt that
fairness was an avoidance of, and a freedom from, discrimination. When
PHARMAC says to NZORD members that their medical conditions are too
expensive to treat, then ‘G’ believes this situation amounts to discrimination.
PHARMAC tends to deal with these problems in a somewhat cavalier
fashion and the discrimination is based on what we believe to be
unreasonable decisions. Public law requires that agencies act
reasonably and in the end this is really an unacceptable level of
discrimination…if life is to be saved by medical interventions and
PHARMAC is not going to provide these interventions and we would
say the client is being discriminated against. Rights are not
determined by what it costs to exercise the right. (Interviewee G)
Interviewee ‘G’ had a lot to say about PHARMAC’s use of cost-utility analysis in
dealing with NZORD members claims for Community Exceptional
Circumstances for unsubsidised medicines.
They are using cost-utility analysis, QALYs and DALYs 60 as
legitimate and useful tools. But they are only tools and they cannot
be the only thing used in the decision making process. Cost-utility
60 DALYs refer to disability adjusted life years. This much criticised measure attempts to understand the costs associated
with the burden of disease on health care funding organisations.
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