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

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Table 6: PHARMAC Interviewees Interviewee Status Position A A past or present PHARMAC B A past or present PHARMAC C A past or present PHARMAC D A past or present PHARMAC Senior Manager Medical Director Medical Advisor Exceptional Circumstances Applications Manager There were two interviews transcribed from past or present Ministers of Health who both had considerable experience dealing with PHARMAC. Table 7: Past or Present Minister of Health interviewees Interviewee Status Position E A past or present Minister of Health F A past or present Minister of Health There were two interviews transcribed from patient advocate groups they were the New Zealand Organisation for Rare Disorders and the New Zealand AIDS Foundation. The New Zealand AIDS Foundation has had a long association with PHARMAC and has been involved with many Community Exceptional Circumstances claims. The New Zealand Organisation for Rare Disorders which has represented many patients with orphan diseases which are very rare, have complicated pathology, are difficult to treat and have very high cost treatments. Table 8: Patient Advocacy Groups interviewees Interviewee Position Group G Executive Representative New Zealand Organisation for Rare Disorders (NZORD) H Executive Representative The New Zealand AIDS Foundation (NZAF) 160
Part II: The Key Informant Interviews The purpose of presenting raw text here is to allow the interviewees to do the talking. Readers will hear the opinions expressed by the interviewees on the various subjects discussed and will be able to discern the tone of the interviews and in some cases the depth of feelings and commitment of the interviewees to getting their story told. Interviewee ‘A’: “If there aren’t any constraints then everybody will become exceptional” Interviewee A was a past or present senior manager of PHARMAC. ‘A’ described the Community Exceptional Circumstances policy as a way of dealing with individuals who needed or wanted a subsidy for medicines that were not on the Community, Cancer or Hospital Pharmaceutical Schedules. ‘A’ described the claims as coming from people who didn’t fit the standard schedule of subsidies. Primarily, ‘A’ saw the Community Exceptional Circumstances policy as a resource allocation mechanism with quite specific criteria around it, however did concede that the rarity criterion was not strictly adhered to by PHARMAC. This method [Community Exceptional Circumstances] was used for allocation of relatively high costs of medicines for rather a few numbers of individuals. The numbers became a marginal call. It might be that we would provide a drug for the 10 people, it might be a hundred people, it may be 300 people. It’s not so much that we were thinking about it in relation to the taxpayer, because this works largely in relation to the amount of money available, so we were trying to think about, well, how you provide a greater overall benefit to a larger number of people. (Interviewee A) When asked how PHARMAC decided that rare meant less than 10 cases of any particular condition at any one time in New Zealand, ‘A’ referred to the fact that PHARMAC did not invent the definition but inherited the definition from the 161
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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
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
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Page 131 and 132: monopolies as such. In their opinio
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Page 135 and 136: NCWNZ that S42(a) of the Bill, requ
Page 137 and 138: contentious among Maori Iwi. Any Ma
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Page 145 and 146: Herceptin. The plaintiffs forwarded
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Page 157 and 158: 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
Page 165 and 166: The drug to treat Pompe’s Disease
Page 167 and 168: The Voice of Patients and Family Me
Page 169 and 170: Sclerosis Society did this three ti
Page 171 and 172: was suffering would not pass the ra
Page 173: Eight of the twelve persons approac
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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
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Page 197 and 198: and PHARMAC is not above rationing
Page 199 and 200: This case demonstrated that the cos
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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
Page 211 and 212: The Ministry of Health could not lo
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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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