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

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guidance given by the PHARMAC Board to any of the PHARMAC Community Exceptional Circumstances Panels from August 2000 to August 2009. In response PHARMAC’s Acting Chief Executive, Steffan Crusaz replied in response that: The EC Panel does not write a ‘decision’ that explains the reasoning for its determination. When the EC Panel meets, its members discuss the application and agree whether or not the application meets the exceptional circumstances criteria for funding or not (or, in some circumstances the EC Panel may consider that it requires further information before it can make a decision). (S Crusaz PHARMAC) The response to the second request for information identified any instruction or guidance given by the PHARMAC Board to any of the Community Exceptional Circumstances Panels. In response, Crusaz enclosed a briefing paper to the PHARMAC Board which was written in 2006 seeking resolutions clarifying the Terms of Reference and the financial delegations of the Community Exceptional Circumstances Panel. PHARMAC released a breakdown of the annual amounts and types of subsidy approved by the Community Exceptional Circumstances Panels between 2000 and 2009 in an Excel spreadsheet. This is provided in Appendix 8 on the accompanying CD ROM. The data confirmed there are on average 450 applications each year which includes new and renewal applications. PHARMAC spends approximately $3 million each year on Community Exceptional Circumstances. The table showed that in some years the $3 million allocated to fund Community Exceptional Circumstances claims was underspent. Official information Act Request to the Department of the Prime Minister and Cabinet I wrote to the Chief Executive of the Department of the Prime Minister and Cabinet (DPMC) requesting under the OIA all cabinet papers submitted by Ministers which mention PHARMAC’s Community Exceptional Circumstances and Cancer Exceptional Circumstances policies between 2000 and 2008. I asked the Chief Executive of the DPMC for any documents which refer to the principles on which PHARMAC was required to make decisions and any public 198
consultation documents which related to Community Exceptional Circumstances and Cancer Exceptional Circumstances between 2000 and 2008. I requested all government budget documents provided to Cabinet by the Minister of Finance which indicate the allocations made to PHARMAC for the purpose of funding Community Exceptional Circumstances and Cancer Exceptional Circumstances applications between 2000 and 2008. Maarten Wevers, the Chief Executive of the DPMC replied that there were no documents at all which were held that fell within the scope of the request. He indicated that my request related to Cabinet papers which would have been prepared by officials for the Minister of Health and consequently my request was referred to the Hon. Tony Ryall, Minister of Health. The Health Minister replied that no Cabinet papers were submitted by the Minister between the years 2000 and 2009, and no Cabinet papers or Ministers’ recommendations which related to public consultation by PHARMAC between the periods. Consequently, there were no documents identified which could be released. Wevers similarly referred my request to the Minister of Finance, Hon. Bill English, because part of the request related to budget preparations and appropriations to PHARMAC. The Minister advised that in his opinion there were no documents which fell into the scope of my request; that is, that the information cannot be found or alternatively does not exist. The Finance Minister went on to say that the public interest has been served under Section 9 (1) of the Act namely that: Good reason for withholding official information exists...unless, in the circumstances of the particular case, the withholding of that information is outweighed by other considerations which render it desirable, in the public interest, to make that information available. (Hon. Bill English Minister of Finance) In summary, as a result of this section of the OIA request, I was told that no papers had been received by the Cabinet or the Finance Minister relating to funding decisions related to Community Exceptional Circumstances and these matters had not been discussed. 199
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How does the operation of PHARMAC
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Applying the Test-Questions .......
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Appendix 9: Analysis of Material Re
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List of Abbreviations ABS Australia
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Attestation of Authorship I hereby
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I gratefully acknowledge Major Camp
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Abstract This thesis explores how g
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Chapter 1: Introduction What is thi
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making? Should a person’s level o
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there is no mathematical calculatio
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health, disability, treatment of ol
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I then moved to the subject of rati
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In Chapter 3, New Zealand’s past
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Chapter 2: Background Introduction
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The following journals have no auto
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Technological and pharmaceutical di
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in every sense, and attenuates the
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waiting time for first (or subseque
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Macro-Level Distributions Macro-lev
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(2000) in a report for the Ministry
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level, too many to discuss here. On
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effectiveness of treatment. However
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surgical treatment for ectopic preg
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In a study conducted by the Commonw
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They claim that health inequities c
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these presentations are correct, th
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waiting list for patient priority.
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care within finite resources. The c
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to pay for this co-operation. In 20
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Other results showed that 81% of th
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may be grounds for litigation. Henc
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determine if decisions on the appli
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Chapter 4: Philosophical Framework
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extra person with a good or service
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just actions by individuals. The th
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among the members of the society, a
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example of well off and powerful pe
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necessarily much advantaged over a
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among individuals and communities.
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needs. This was because distinguish
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systematic and transparent. In her
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why PHARMAC would subsidise unecono
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parents refusing treatment for thei
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The first two test-questions covere
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There was no clarity provided by th
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good may be served by their not rec
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Evans (2003) ranked the various typ
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The Use of the Test-Questions in Th
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Qualitative research methods were d
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equirements and considerable politi
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material and by working through the
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and printed copies of Hansard are a
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PHARMAC was criticised in 16 of the
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I tried to find an interviewee from
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The flow of discussion in the inter
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that the disclosure is commercially
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6. Producing the report The final o
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The following tables outline the no
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Table 3: Tree Nodes Used in NVivo A
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At this point, I stopped using NViv
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Chapter 6: Research Findings Introd
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DHBs were given the role of funding
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These measures were in response to
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Table 5: The Submitters to the Heal
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towards New Zealand and for them to
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monopolies as such. In their opinio
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for the delivery of such services (
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NCWNZ that S42(a) of the Bill, requ
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contentious among Maori Iwi. Any Ma
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Dugdale further advised that if non
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cumbersome and recommended that PHA
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following text, I have individually
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Herceptin. The plaintiffs forwarded
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the treatment of cancer in the DHB
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eligible people in New Zealand and
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confirmation that the DHB hospital
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the eight women involved in this ca
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the plaintiffs adequate opportunity
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Judge’s Concluding Remarks The fi
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A Selection of the Media Stories Ca
Page 161 and 162: Case 4: “Worn out by endless figh
Page 163 and 164: Case 6: “PHARMAC scolded for MS-d
Page 165 and 166: The drug to treat Pompe’s Disease
Page 167 and 168: The Voice of Patients and Family Me
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Page 171 and 172: was suffering would not pass the ra
Page 173 and 174: Eight of the twelve persons approac
Page 175 and 176: Part II: The Key Informant Intervie
Page 177 and 178: agreed this was done. Secondly, PHA
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Page 181 and 182: No we have never thought that $3 mi
Page 183 and 184: Insights were given as to the indep
Page 185 and 186: and Now some people can say that’
Page 187 and 188: Q Be a voice for the family? A Yes,
Page 189 and 190: key issue here. Some clinicians wer
Page 191 and 192: I deeply suspect that Community Exc
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Page 197 and 198: and PHARMAC is not above rationing
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Page 203 and 204: Q Do you recall the Kaletra issues
Page 205 and 206: Q Can I ask you about PHARMAC’s c
Page 207 and 208: ….successfully…for things espec
Page 209 and 210: This was also done for the hard cop
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Page 219 and 220: Again no report was attached from t
Page 221 and 222: The patient was also prescribed pre
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Page 227 and 228: their clinical circumstances would
Page 229 and 230: Theme 1. Theme 2. Theme 3. Theme 4.
Page 231 and 232: Chapter 7: Discussion Introduction
Page 233 and 234: the intellectual property to recove
Page 235 and 236: The use of QALY’s was tested in t
Page 237 and 238: Test-Question 2 “Is this distribu
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Page 241 and 242: (2011-2012) in an open and transpar
Page 243 and 244: The cost-utility analysis system ha
Page 245 and 246: Another form of decision making use
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Page 249 and 250: Test-question 4 also raises the pro
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Page 261 and 262: The data from the research showed h
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PHARMAC could be more open about st
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Chapter 8: Conclusions Introduction
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Limitations to the Research The ite
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There is no one set of indefeasible
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to alcohol and drug treatment or th
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well placed to lead further researc
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utilitarian principles of attemptin
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stand up to the same rigorous clini
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Appendices: Appendix 1: Ethics Appr
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Appendix 2: Key Informant Participa
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Appendix 3: Key Informant Consent F
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Appendix 4: Sample Interview Questi
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Appendix 5: OIA Request Greg Coyle
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Appendix 6: OIA Response from PHARM
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Appendix 7: Community Exceptional C
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Appendix 8: Community Exceptional C
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Ashton, T., & St John, S. (2008). N
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Cohen, G. A. (2008). Rescuing Justi
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Dew, K., Cumming, J., McLeod, D., M
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Glubb, N. (2011). Official Informat
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Holt, S., Harwood, M., Aldington, S
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Lindblom, C. E. (1959). The Science
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http://www.moh.govt.nz/moh.nsf/ea60
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Cash Flows (Ed.), Government of New
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PB/132 National Council of Women of
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Romano, C. (2009). Amartya Sen Shak
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Swedish Parliamentary Priorities Co
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