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

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that in adopting the cost-utility analysis as the basis for a utilitarian approach, PHARMAC attempted to meet the needs of the greatest number within the budget provided to it. However, what was also established in Theme 2, Inconsistently Applied Criteria was that doctors acting either as advocates or as decision makers have no more understanding of moral content of allocative decisions than anyone else. This was clearly articulated by the key informant interviewee who had adjudicated on thousands of ‘Community Exceptional Circumstances’ claims. This interviewee stated that he/she was simply not equipped to rule on the fairness component of Community Exceptional Circumstances claims, only on clinical medical matters related to the claims. This discomfort may also explain why PHARMAC’s Exceptional Circumstances Panel did not record their decisions in writing and why they did not disclose what relative weighting was given to each criterion. To do so would require panel members to articulate, for public gaze, the personal, moral and ethical positions which underpinned their decisions. The second part of this test-question asks if decision makers know about the capability of the person to value the distribution being provided. The question explored what decision makers know about the people to whom they are providing access to pharmaceuticals. The test-question also asks what they know about the consequences on the lives of people who are granted or denied access to pharmaceuticals. For example, a Community Exceptional Circumstances claimant with terminal cancer may claim that he/she has good reason to value the extending of his/her life for as long as possible with whatever medical or surgical interventions are available. Another person in similar circumstances may have reason to value refusing chemotherapy treatment and having a drug-free end of their life, albeit possibly a shorter life. Sen contends that decision makers should be in receipt of this information. 234
Test-question 4 also raises the problem of the QALY calculation being blind to the circumstances of the claimant’s capabilities. When PHARMAC utilise the QALY calculation, it tries to quantify what contribution (or part of a contribution) a medicine makes to one added year of life. The NHC also intend to take this approach for the more general provision of health services. The second part of this approach determines the cost of adding a year (or part of a year) of life. As has been discussed previously, the cost-utility analysis only considers the quantifiable costs to the public health service in providing the treatment. For example, the costs which are not considered in the QALY calculation are the costs to other government agencies of having a member of society out of the workforce. Similarly, there are financial and non-financial benefits to the patient of being an able family member and being able to work and contribute to society. One case in the media study described a woman with terminal cancer who requested a drug to enable her to cuddle her daughter. It was suggested that these non-financial capabilities that claimants have good reasons to value should be considered as well. PHARMAC has strenuously avoided knowing these capacities because such commensurables are impossible to compare from one patient to another and the basic principle of a QALY (one QALY is equal in every way to another QALY) would be impossibly undermined. Secondly, if PHARMAC were to calculate the QALY’s gained for people who cannot work because of reduced capability for example chronic illness or age, these people would be put at an immediate disadvantage to those who can work and contribute a measurable monetary value. Thirdly, people with co-morbidities, where several pathological factors are at play, would immediately be put at a disadvantage. This is because people suffering more than one condition may be considered of lesser economic value to society than a person with only one illness to contend with. These examples are what Sen refers to as the underlying capability, that is valuing good health. This research has uncovered the many interpretations of 235
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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
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
Page 213 and 214: consultation documents which relate
Page 215 and 216: 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: discuss how (or if) PHARMAC meets t
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 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 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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Page 295 and 296: 281
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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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