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

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So, in the first purpose, PHARMAC is recognised as a very open and accountable agency. However, in the second purpose, particularly with regard to the operational management of ‘Community Exceptional Circumstances’, there is a tension for unsuccessful claimants between PHARMAC making decisions and describing why decisions are made. Rightly or wrongly, this leaves unsuccessful claimants with the impression that PHARMAC’s decision making is a closed off, irreversible and unfair process. In my view the data suggest that test-question 2 has explained PHARMAC’s lack of openness when making allocative decisions and developed insight into how PHARMAC (and its allocative committees) work. The question has opened up the discussion about the relationship which PHARMAC has developed with the pharmaceutical industry, the general public and stakeholders with a specific interest in Community Exceptional Circumstances. This research has demonstrated that the reticence of PHARMAC to provide reasons for decisions have been shown to be understandable but in violation of the Rawlsian principles of openness and fairness to claimants. Test-Question 3 “Is this distribution based on the efficiency of substantive opportunities and on procedural fairness in defining efficiency?” This question based on Sen’s principles, has two parts. The first asks how PHARMAC defines rationality (or manages the analysis of rationality) to ensure pharmaceuticals are available for the greatest number of people within the resources available. This first part of the question explores PHARMAC’s management of relevant inequalities through the rationing of pharmaceuticals. Gillon (2006) has acknowledged that economists’ interpretations of this position have come to mean some sort of comparative economic calculation of meeting need. PHARMAC has chosen the cost-utility analysis (QALY’s) and the analysis of clinical effectiveness as two instruments by which it can measure the substantive opportunities of the pharmaceutical budget. 228
The cost-utility analysis system has been well discussed in this thesis and the strengths and weaknesses of the system do not need to be re-litigated here. However, Theme 4, PHARMAC - No Stated Philosophy confirmed that PHARMAC policies operate on a comparative cost analysis as the basis for its utilitarian decision making. Contributors for the research have stated that this criterion dominates all other decision making criteria. The reason for this is to enable PHARMAC (through its allocative committees and panels) to make decisions, the consequences of which do not exceed PHARMAC’s budgets. As far as the measure of clinical effectiveness is concerned in determining which medicines PHARMAC will subsidise, data presented in this research indicated that the use of committees and panels of experts to examine available research and published journal articles has served PHARMAC very well. The NZORD suggested that PHARMAC’s panels may not be expert enough when dealing with very rare diseases. The McCormack Review of High Cost Medicines (PHARMAC, 2006) suggested that paediatric Community Exceptional Circumstances claims were not adequately understood by the panel members. PHARMAC’s non-economic criteria, which aim to meet the Medicine Strategy’s aspirational goals, have been shown to be less important to PHARMAC than economic considerations. This raises the question why does PHARMAC have other criteria, if they these criteria can never override the affordability criterion? One answer to this question is that PHARMAC’s economic calculation is very important to Ministers as a political imperative. This was confirmed in the interviews with both past and present Health Ministers. They stated in Chapter 5 that despite the debate about cost-utility analysis and whether or not it was an adequate system, it is a system which is internationally recognised and does represent some level of comparative economic analysis. On this basis, Ministers stated that there was no political appetite to change this way of doing things. The Horn Report to the Minister of Health in 2010 sought to encourage 229
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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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Page 195 and 196: make. And so PHARMAC has been a hug
Page 197 and 198: and PHARMAC is not above rationing
Page 199 and 200: This case demonstrated that the cos
Page 201 and 202: and budget management. It says this
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
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 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
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Page 241: (2011-2012) in an open and transpar
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 253 and 254: for example value for money, equity
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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 and 268: Limitations to the Research The ite
Page 269 and 270: There is no one set of indefeasible
Page 271 and 272: to alcohol and drug treatment or th
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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
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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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