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

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The names of most of the PHARMAC staff have been deleted from these documents however many documents contained initials of the PHARMAC staff. An informed reader could, in many cases, decipher which person wrote the document or who was being referred to in the document. The names of many non-PHARMAC people such as the Regional Health Authority staff, medical and pharmaceutical interest groups and the Ministry of Health personnel were not withheld. Official Information Act Request to the Ministry of Health In my letter to Stephen McKernan, Director-General of Health, on 5 th February 2009, I requested all reports and briefing documents which were given to the Minister of Health relating to PHARMAC’s Community Exceptional Circumstances policy between 2000 and 2008. I asked for reports and advice which was forwarded to the Minister regarding the criteria for the appointment of the Community Exceptional Circumstances Panels, the names and backgrounds of all members who have served on this committee between 2002 and 2008. The request also included all reports and advice forwarded to the Minister of Health or prepared by the Ministry of Health and reports to the Minister regarding PHARMAC’s transparency and accountability to Parliament between 2002 and 2008. Finally, I asked for a copy of the public submissions which were made to the Ministry of Health in relation to the Towards a New Zealand Medicines Strategy consultation document between December 2006 and March 2007. The Ministry of Health advised that the material in this request was available in the public domain on the Ministry of Health website. They also advised that they needed more time to consider my request and extended their response time by 20 days. On 7 th April Deborah Roach, Deputy-Director General of Health (Health and Disability Systems Strategy) advised that 12 documents were being released under the terms and conditions of the OIA in response to my request. Several documents were withheld because release of material would hinder the ability of Ministry of Health staff to maintain the conduct of effective public affairs and provide free and frank expressions of opinions to the Minister of Health. 196
The Ministry of Health could not locate any papers relating to the development of criteria for the selection of members for the Community Exceptional Circumstances Panels. It advised that the Ministry does not hold the names of persons who have been appointed to the Community Exceptional Circumstances Panels 63 and therefore could not provide them. This is most unusual because the Ministry of Health made all the recommendations to the Minister for Panel appointments. The letter also advised that the Ministry officials had released advice prepared for the Minister of Health specifically relating to the Community Exceptional Circumstances policy and several briefing papers which were prepared for the Minister prior to meetings with PHARMAC, health advocacy organisations and the pharmaceutical industry. In 12 reports provided under this OIA request, 147 pages were received. There were 25 pages with material withheld either as part of a page or whole pages. In all, 17% of the material was withheld. Several papers appear to be withheld because of commercial sensitivity. The Director-General of Health released draft papers, papers, letters, e-mails and file notes relating to the requested material. All the documents were read and material which was pertinent to the Community Exceptional Circumstances policy was retyped into a Word file and coded into the appropriate nodes. Second Official information Act Request to PHARMAC In my letter to PHARMAC in September 2008, I requested under the OIA a copy of all written decisions made by any of the PHARMAC ‘Community Exceptional Circumstances’ Panels from 1 st April 2009 to the 31 st August 2009 and a breakdown of the annual amounts and types of subsidy or payment approved by any panel between 2000 and 2009. I understood that any names and addresses or other identifying information on these documents would be withheld. Secondly, I asked for any documents which identify instructions or 63 This is curious because during a Key Informant Interview one person who had been a member of the Panel said he/she was required to submit Curriculum Vitae to the Ministry of Health. The Ministry staff had stated to the interviewee that the CV would be held in case they wanted to appoint him/her to other expert PHARMAC panels. I did not know this at the time of the OIA request. Had I known this I would have pursued this point with the Ministry. This is not possible now because the time allowed for doing this under this OIA request rules had elapsed. 197
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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
Page 159 and 160: 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
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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: This was also done for the hard cop
Page 213 and 214: consultation documents which relate
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Page 217 and 218: with the application. The discharge
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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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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