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

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arose in the interview, counselling was to be offered to the participant. No counselling was required as a result of this research. The participants were given the opportunity to discontinue the interview either temporarily or permanently. The AUTEC conditions required that if a permanent withdrawal occurred another participant would be found to replace the withdrawn participant. No interviewee withdrew from any interview. Interviewee ‘H’ asked for the voice recorder to be switched off for approximately 3 minutes. The voice recorder was subsequently turned on again after the comments were made. The AUTEC was advised that the cost of the transcriptions was subsidised by the Director of the Institute of Public Policy, Auckland University of Technology. No koha 19 were made to the participants of interviews with the exception of a few interviews which took place in Cafes, in which case I paid for the coffees. Gathering the Data The New Zealand Public Health and Disability Act 2000 The NZPHDA 2000 which established DHBs in New Zealand also re- established the community’s ability to elect half of the health board members. This legislation transformed PHARMAC from a shared purchasing agency (owned by the four RHA’s) into a Crown Entity wholly owned by the New Zealand Government. The NZPHDA 2000 placed a legal responsibility on PHARMAC to manage the pharmaceutical needs of people whose circumstances were described as exceptional. The important information for my research was discovering the intention of Parliament in proposing this legislation and the public submissions received on the new structures. The data section includes speeches by the Minister and politicians during the passage of the law through the New Zealand Parliament. This data were collected by searching Hansard, New Zealand Parliament’s official record of all the proceedings of Parliament. Hansard is available online through the New Zealand Parliament website http://www.parliament.nz/en-NZ 19 ‘Koha’ is a Maori word in common New Zealand usage meaning a gratuity payment of cash, goods or kind. 88
and printed copies of Hansard are also available in the Parliamentary Library. I used both forms of Hansard in my research. I also researched all the written public submissions received on the Bill from members of the public and government departments. These submissions were only available to be read by appointment in the Parliamentary Library. They were available in bound bundles of papers in boxes in the library. The submissions had to be requested prior to each visit. The papers were found and prepared by the Parliamentary Library staff and were only able to be photocopied by the staff. I attended the Parliamentary Library on approximately 10 occasions for periods of about 4 hours on each occasion to obtain the material required for my research. Walsh vs PHARMAC Walsh vs PHARMAC was a case in the New Zealand Court of Appeal bought by Chris Walsh and seven other women against PHARMAC. They appealed an earlier decision by the High Court to allow PHARMAC to fund a drug called Herceptin for a nine week course and not a twelve month course of treatment. The material for this data section was taken from the judge’s written decision on the case. I have drawn on this decision because it was a legal test of PHARMAC’s Community Exceptional Circumstances policy and a detailed investigation into PHARMAC’s policies and procedures. This was also a rare opportunity to consider perspectives from people and groups who might otherwise be reluctant to talk or write on such matters, especially PHARMAC officials. I considered this judgment was important to my research. The written judgment was analysed from the perspective of the claims made by the plaintiffs, the responses made by PHARMAC and the legal issues raised and discussed by the judge in his judgment. Media Study A media study was undertaken of stories which appeared in the media relating to PHARMAC’s Community Exceptional Circumstances policy. This study explored the way in which the policy has been portrayed in the media. It was 89
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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
Page 51 and 52: these presentations are correct, th
Page 53 and 54: waiting list for patient priority.
Page 55 and 56: care within finite resources. The c
Page 57 and 58: to pay for this co-operation. In 20
Page 59 and 60: Other results showed that 81% of th
Page 61 and 62: may be grounds for litigation. Henc
Page 63 and 64: determine if decisions on the appli
Page 65 and 66: Chapter 4: Philosophical Framework
Page 67 and 68: extra person with a good or service
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Page 73 and 74: example of well off and powerful pe
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Page 87 and 88: The first two test-questions covere
Page 89 and 90: There was no clarity provided by th
Page 91 and 92: good may be served by their not rec
Page 93 and 94: Evans (2003) ranked the various typ
Page 95 and 96: The Use of the Test-Questions in Th
Page 97 and 98: Qualitative research methods were d
Page 99 and 100: equirements and considerable politi
Page 101: material and by working through the
Page 105 and 106: PHARMAC was criticised in 16 of the
Page 107 and 108: I tried to find an interviewee from
Page 109 and 110: The flow of discussion in the inter
Page 111 and 112: that the disclosure is commercially
Page 113 and 114: 6. Producing the report The final o
Page 115 and 116: The following tables outline the no
Page 117 and 118: Table 3: Tree Nodes Used in NVivo A
Page 119 and 120: At this point, I stopped using NViv
Page 121 and 122: Chapter 6: Research Findings Introd
Page 123 and 124: DHBs were given the role of funding
Page 125 and 126: These measures were in response to
Page 127 and 128: Table 5: The Submitters to the Heal
Page 129 and 130: towards New Zealand and for them to
Page 131 and 132: monopolies as such. In their opinio
Page 133 and 134: for the delivery of such services (
Page 135 and 136: NCWNZ that S42(a) of the Bill, requ
Page 137 and 138: contentious among Maori Iwi. Any Ma
Page 139 and 140: Dugdale further advised that if non
Page 141 and 142: cumbersome and recommended that PHA
Page 143 and 144: following text, I have individually
Page 145 and 146: Herceptin. The plaintiffs forwarded
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Page 151 and 152: 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
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Case 4: “Worn out by endless figh
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Case 6: “PHARMAC scolded for MS-d
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The drug to treat Pompe’s Disease
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The Voice of Patients and Family Me
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Sclerosis Society did this three ti
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was suffering would not pass the ra
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Eight of the twelve persons approac
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Part II: The Key Informant Intervie
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agreed this was done. Secondly, PHA
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the pharmaceutical schedule. The or
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No we have never thought that $3 mi
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Insights were given as to the indep
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and Now some people can say that’
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Q Be a voice for the family? A Yes,
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key issue here. Some clinicians wer
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I deeply suspect that Community Exc
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should be developing the capacity o
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make. And so PHARMAC has been a hug
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and PHARMAC is not above rationing
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This case demonstrated that the cos
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and budget management. It says this
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Q Do you recall the Kaletra issues
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Q Can I ask you about PHARMAC’s c
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….successfully…for things espec
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This was also done for the hard cop
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The Ministry of Health could not lo
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consultation documents which relate
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The following information was recei
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with the application. The discharge
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Again no report was attached from t
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The patient was also prescribed pre
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circumstances described were not su
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treatment was not unusual and the c
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their clinical circumstances would
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Theme 1. Theme 2. Theme 3. Theme 4.
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Chapter 7: Discussion Introduction
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the intellectual property to recove
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The use of QALY’s was tested in t
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Test-Question 2 “Is this distribu
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claimants (and unsuccessful drug co
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(2011-2012) in an open and transpar
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The cost-utility analysis system ha
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Another form of decision making use
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discuss how (or if) PHARMAC meets t
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Test-question 4 also raises the pro
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when there is no profound evidence
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for example value for money, equity
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Community Exceptional Circumstances
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Interferon available to a limited n
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challenges are multiple: to identif
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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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