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

The Voice of Patients and Family Members
The list of feelings expressed by patients and family members were concern,
annoyance, agrievement, friendly, anxiety, outrage, bemusement,
dissatisfaction, regret, bitterness, sadness, anger, cynicism, disappointment,
and kindness. All of the patients in the articles shared a common desire; to tell
their story about access to medications, which for one reason or another were
not able to be provided to them for their treatment under the Community
Exceptional Circumstances scheme.
Each patient and family member had a different perspective on what this meant
to them. These perspectives ranged from headlining that PHARMAC had
delivered them a ‘death sentence’ to statements such as ‘patient unable to get
medicine.’ Some patients seemed not to be concerned for themselves when
they did not qualify for a subsidy but were concerned about others who were
less fortunate than them and might not be able to pay for their medicine without
a Community Exceptional Circumstances subsidy.
Many of the patients who appeared in the media articles complained that their
applications for Community Exceptional Circumstances were not successful.
They regularly commented that this was unfair. The patient’s expectations of
being successful were high and they expressed disappointment at being
refused. There were there very few comments from patients about the greater
needs of the community in relation to their often very expensive claims in
contrast to physicians and managers who were aware of the high cost of the
claims.
Many patients had gone to the media with their story without exploring possible
assistance from PHARMAC or WINZ. On occasions, these agencies may have
been able to help them.
The Voice of Doctors
Nine doctors appeared in the twenty three media stories as advocates for their
patients. Many doctors expressed their frustration at being in the position of
knowing that an expensive drug may have some benefit for their patient and not
being able to secure public funding for the treatment. One medical specialist
from the UK was critical of PHARMAC because his advice was not accepted by
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