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

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effectiveness <strong>of</strong> treatment. <strong>How</strong>ever, not providing funding to terminally ill<br />

people for experimental treatments which ultimately prove to be beneficial, even<br />

curative, may mean that people will die unnecessarily. Not paying for<br />

treatments which exist, but come at a prohibitively high cost, may leave people<br />

who are critically ill with a sense <strong>of</strong> abandonment in <strong>the</strong>ir hour <strong>of</strong> need (Daniels<br />

& Sabin, 2008).<br />

An example <strong>of</strong> <strong>the</strong> Rule <strong>of</strong> Rescue lobbying occurred in 2008 in <strong>the</strong> UK when<br />

NICE declined to place four cancer drugs on <strong>the</strong> national formulary. One <strong>of</strong><br />

<strong>the</strong>se drugs was described by <strong>the</strong> London Daily Telegraph as being able to<br />

“double life expectancy” and called <strong>the</strong> NICE decision “a devastating death<br />

sentence for cancer patients” (Tapu, 2008). The drug referred to was<br />

Herceptin 7 . Even if Herceptin was shown to improve <strong>the</strong> life expectancy (not<br />

provide a cure) <strong>of</strong> patients after twelve months <strong>of</strong> treatment, <strong>the</strong> costs might be<br />

too large for Britain and o<strong>the</strong>r European countries, compared with o<strong>the</strong>r<br />

priorities to publicly fund o<strong>the</strong>r health services. The newspaper article claimed<br />

that this drug, plus a raft <strong>of</strong> o<strong>the</strong>r designer cancer drugs, was so expensive that<br />

<strong>the</strong>y could spell <strong>the</strong> end <strong>of</strong> Europe’s tradition <strong>of</strong> social health care (Tapu, 2008).<br />

Funding difficulties related to <strong>the</strong> provision <strong>of</strong> Herceptin in New Zealand is also<br />

discussed in <strong>the</strong> Research Findings (Chapter 6) <strong>of</strong> this <strong>the</strong>sis.<br />

The Rule <strong>of</strong> Rescue develops questions about just what is a prohibitively high<br />

cost. <strong>How</strong> much is too much to save a person’s life? <strong>How</strong> much is too much to<br />

attempt to save a person’s life? <strong>How</strong> much is too much to spend attempting to<br />

prolong a person’s life? <strong>How</strong> much is too much to attempt to prolong a person’s<br />

life for a few more days or hours?<br />

Hadorn (2006) acknowledged <strong>the</strong>se questions are real dilemmas for individuals.<br />

<strong>How</strong>ever, he advocated that public health services should rule ‘out <strong>of</strong> bounds’<br />

any appeals to <strong>the</strong> imminent death or ‘only hope’ treatments which fail <strong>the</strong><br />

7 Throughout this <strong>the</strong>sis I have used <strong>the</strong> AMA Manual <strong>of</strong> Style (10th edition) protocol for using <strong>the</strong> names <strong>of</strong><br />

branded medicines. Specifically <strong>the</strong> AMA states that a trademark, for example ®, TM or SM, should not be<br />

used in scientific journal articles or references, but <strong>the</strong> initial letter <strong>of</strong> a trademarked word should be<br />

capitalised(American Medical Association, 2007). Note that I have capitalised ‘Herceptin’ because it is a<br />

branded trademarked name <strong>of</strong> a medicine. The use <strong>of</strong> scientific componentgeneric names <strong>of</strong> medicines is<br />

not capitalised, for example prednisone (as seen on p. 194 <strong>of</strong> this <strong>the</strong>sis). PHARMAC’s table <strong>of</strong><br />

Community <strong>Exceptional</strong> Circumstances claims released under <strong>the</strong> OIA (Appendix 7 p.272) gives many<br />

examples <strong>of</strong> this convention e.g. Suboxone which is a branded drug and buprenorphine which is a generic<br />

drug.<br />

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