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

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PHARMAC propose to post a list <strong>of</strong> such drugs on <strong>the</strong>ir website and clinicians<br />

will be advised to check <strong>the</strong> list before making an application.<br />

PHARMAC has recognised that <strong>the</strong> current <strong>Exceptional</strong> Circumstances policy<br />

contains some very unfair elements. The definition <strong>of</strong> rare being fewer that 10<br />

patients with <strong>the</strong> same condition in New Zealand at any one time is simply not<br />

able to be managed. PHARMAC have also acknowledged that <strong>the</strong> application<br />

<strong>of</strong> <strong>the</strong> criteria has been inconsistent and <strong>the</strong>y have not adequately<br />

communicated <strong>the</strong> reasons for decisions to <strong>the</strong> claimants.<br />

There is also <strong>the</strong> recognition in <strong>the</strong> Review document that moral and ethical<br />

considerations do play a part in decision making. They argue that <strong>the</strong>re must<br />

be fairness between <strong>the</strong> treatment <strong>of</strong> claims by individuals, groups <strong>of</strong> individuals<br />

and hospital patients. <strong>How</strong>ever, this <strong>does</strong> not deal with <strong>the</strong> inherent unfairness<br />

<strong>of</strong> limiting access to patients who suffer very rare diseases and are unique or<br />

part <strong>of</strong> a small group when <strong>the</strong> greater population has access to drugs under<br />

<strong>the</strong> pharmaceutical schedule simply because <strong>the</strong>y are greater in number.<br />

A press release in June 2011 68 by PHARMAC’s Chief Executive indicated that<br />

PHARMAC had decided to increase <strong>the</strong> funding for <strong>the</strong> old <strong>Exceptional</strong><br />

Circumstances Scheme (now referred to as <strong>the</strong> Named Patient Pharmaceutical<br />

Assessment scheme) to $8 million per year. In doing so PHARMAC recognised<br />

that <strong>the</strong> current <strong>Exceptional</strong> Circumstances policy contains elements which<br />

were too restrictive for claimants. PHARMAC acknowledged <strong>the</strong> inadequacies<br />

<strong>of</strong> <strong>the</strong> current scheme, however <strong>the</strong>y indicated that <strong>the</strong>re is still no purpose an<br />

exceptional circumstances scheme could meet which would ensure that all<br />

people would be provided all medications which are needed.<br />

Section 7: Regularly Occurring Themes from <strong>the</strong> Data<br />

The regularly occurring <strong>the</strong>mes which emerged from <strong>the</strong> <strong>the</strong>matic analysis<br />

described in Chapter 5 (Research Method) are presented here.<br />

68 http://www.pharmac.govt.nz/2011/06/27/NPPA%20release.pdf<br />

214

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