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

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Development of Alternative Themes from the Data The Braun and Clark (2006) system of thematic analysis which was used required a discipline of reporting the regularly occurring themes which emerged from the data. However, other themes which were not reported but were important themes are also worthy of mentioning. Patton (1990) recognises that there can be a balance between description of emergent themes from qualitative research and interpretation of the themes. Decisions must be made about what to leave out, described by Patton as “the agony of omitting” (p429). The following alternate presentation of themes is consequently recorded here: Individuals from PHARMAC exert considerable pressure and influence over the Community Exceptional Circumstances decision making process; The Community Exceptional Circumstances decision making process is highly variable and contested; How Community Exceptional Circumstances claims are made, has a positive or negative bearing on the outcome of the claim and PHARMAC’s arbitrary thresholds for Community Exceptional Circumstances decision making demonstrate that applicants are unlikely to be successful. These alternate themes do not change the conclusions of the research; rather they amplify the outcome as the themes relate to the test-questions which have been presented. The Use of the Test-Questions The test-questions which I have developed have provided a starting point for the discussion about the themes which emerged from the data and demonstrated their value in analysing the selected constructs of distributive justice. 254
There is no one set of indefeasible answers to the test-questions. This is because there is no single agreed set of values which underpin the process of rationing health resources. However, the greatest value of the test-questions has been to provide decision makers with a framework to analyse the content of fairness and equity of their decisions. Having utilised the test-questions in this research, it has become clear that the questions would not greatly assist decision makers deciding on state distributions at the macro-rationing level. This is because governments do not set their allocative priorities based solely on set theory or fixed policy statements. Governments’ allocative practices evolve and continue to evolve (Jackson, 2006) to meet complex political arrangements and responsibilities. This is particularly so under Mixed Member Proportional (MMP) coalition governments which have dominated in New Zealand parliaments since 1996. The Finance Minister prepares a budget based on these MMP political arrangements and responsibilities (particularly statutory requirements) in discussion with other Ministers, assessments of funding levels by Heads of Government Departments, Chief Executives of Crown Agencies and Treasury officials. At this level, Sen’s and Rawls’ conversations about fairness and equity would play very little part in directing macro-level decisions. Once a government’s budget is presented to Parliament, the estimates of income and expenditure for the government programme (department by department) are debated. In reality, there is little chance for MPs to change the estimates by proposing amendments. This is because such changes will alter the confidence and supply arrangements 79 of the government. However, MPs of all parties may find the test-questions useful to provide a general examination of the fairness and equity of certain elements of the budget. 79In the New Zealand parliament the term ‘confidence and supply’ refers to the ruling party’s holding of power. This is assured for the term of a parliament by the governing party signing agreements with selected minor parties on motions of confidence in the government and on budget appropriation votes which supply funding to the government departments and agencies. 255
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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
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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
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
Page 223 and 224: circumstances described were not su
Page 225 and 226: treatment was not unusual and the c
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
Page 239 and 240: claimants (and unsuccessful drug co
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
Page 247 and 248: discuss how (or if) PHARMAC meets t
Page 249 and 250: Test-question 4 also raises the pro
Page 251 and 252: when there is no profound evidence
Page 253 and 254: for example value for money, equity
Page 255 and 256: Community Exceptional Circumstances
Page 257 and 258: Interferon available to a limited n
Page 259 and 260: challenges are multiple: to identif
Page 261 and 262: The data from the research showed h
Page 263 and 264: PHARMAC could be more open about st
Page 265 and 266: Chapter 8: Conclusions Introduction
Page 267: Limitations to the Research The ite
Page 271 and 272: to alcohol and drug treatment or th
Page 273 and 274: well placed to lead further researc
Page 275 and 276: utilitarian principles of attemptin
Page 277 and 278: stand up to the same rigorous clini
Page 279 and 280: Appendices: Appendix 1: Ethics Appr
Page 281 and 282: Appendix 2: Key Informant Participa
Page 283 and 284: Appendix 3: Key Informant Consent F
Page 285 and 286: Appendix 4: Sample Interview Questi
Page 287 and 288: Appendix 5: OIA Request Greg Coyle
Page 289 and 290: Appendix 6: OIA Response from PHARM
Page 291 and 292: Appendix 7: Community Exceptional C
Page 293 and 294: 279
Page 295 and 296: 281
Page 297 and 298: 283
Page 299 and 300: Appendix 8: Community Exceptional C
Page 301 and 302: Ashton, T., & St John, S. (2008). N
Page 303 and 304: Cohen, G. A. (2008). Rescuing Justi
Page 305 and 306: Dew, K., Cumming, J., McLeod, D., M
Page 307 and 308: Glubb, N. (2011). Official Informat
Page 309 and 310: Holt, S., Harwood, M., Aldington, S
Page 311 and 312: Lindblom, C. E. (1959). The Science
Page 313 and 314: http://www.moh.govt.nz/moh.nsf/ea60
Page 315 and 316: Cash Flows (Ed.), Government of New
Page 317 and 318: 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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