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

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and accountability, and whether they are prepared to defend their decisions. If decisions are open and decision makers are required to declare the reasons for their decisions, the matters which were considered can be drawn out for anyone who has an interest in the outcome to reflect on. This test-question also asks for a discussion on accountability of the distribution and whether decision makers considered all people who had an entitlement to the distribution. Question 3: Is this distribution based on the efficiency of substantive opportunities and on procedural fairness in defining efficiency? This test-question seeks to find out if decision makers have considered the utilitarian principles of the greatest benefit for the greatest number. In the health context, the cost-utility analysis (or a variation of it) uses the international standard measurement system of QALYs to determine substantive opportunities. This test-question asks what do such determinations and comparative analyses show. The second part of the test-question asks if there is procedural fairness in the way the analysis is conceived and undertaken. This gives decision makers an opportunity to look at how the systems work, what information is considered relevant and what is considered irrelevant, the consultation that took place and the systems which were used. Question 4: Is this distribution based on information available to decision makers about the capability of this person to do things he/she has reason to value? This test-question explores the capability approach to fairness and equity by focusing on how the decisions made, or about to be made, affect people’s lives. The question opens up the debate about comparative fairness and consideration of the circumstances of a person’s life and how this person will be affected by the decisions. According to Gillon (2006) groups of decision makers do not share a perfectly matched set of values and so this discussion has the potential to draw out, perhaps more than any of the other three test-questions, discussion on the values which drive decisions. This question focuses on the consequences of decisions by requiring consideration of a person’s capability. The remedies of reducing barriers to capability may not be available to decision makers. For example in the presence of poverty, racism or sexism these incapacities are bought into focus and decision makers are made aware of them. 72
The first two test-questions covered the position of justice for the least advantaged, the issue of equality of access to all and the openness and accountability of the persons or offices making decisions. The second two test- questions offered scrutiny of the efficiency of the distribution, procedural fairness at establishing efficiency and of the consequence of the decision on people’s ability to achieve that which they value. An Example to Illustrate the ‘Test-Questions’ In this section, I illustrate the use of these test-questions in the recent case of the MidCentral DHB’s explicit rationing of chemotherapy treatment for selected cancer patients. On 6 January 2011 a letter was written by the Chief Medical Officer, Dr. Ken Clark on behalf of the Regional Cancer Treatment Service provided by MidCentral DHB. The service for cancer patients covered a population of 555,000 people over a catchment area which included Gisborne (Tairawhiti), Hawke’s Bay, Taranaki, Whanganui and Wairarapa. I obtained the letter by requesting it under the OIA. In this letter Dr. Clark advised the health managers and Chief Medical Officers that the MidCentral DHB Regional Cancer Treatment Service was suffering from intractable recruitment problems and was unable to fill two doctor vacancies on the oncology team. For this reason, by consensus, the Regional Cancer Treatment Service implemented a new prioritisation strategy. I quote from the letter: … which involves a rigorous triaging of referrals with a view to declining referrals of patients for whom there are very limited therapeutic benefits from the provision of chemotherapy. By consensus we have developed a list of clinical presentations for which we will decline referrals. (Clark, 2011) The list of conditions which would not be treated with chemotherapy included all prostate cancers, all melanomas, all soft tissue sarcomas, several other cancers and conditions in which the patient had been treated by chemotherapy and was in relapse. 73
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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
Page 35 and 36: waiting time for first (or subseque
Page 37 and 38: Macro-Level Distributions Macro-lev
Page 39 and 40: (2000) in a report for the Ministry
Page 41 and 42: level, too many to discuss here. On
Page 43 and 44: effectiveness of treatment. However
Page 45 and 46: surgical treatment for ectopic preg
Page 47 and 48: In a study conducted by the Commonw
Page 49 and 50: 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
Page 69 and 70: just actions by individuals. The th
Page 71 and 72: among the members of the society, a
Page 73 and 74: example of well off and powerful pe
Page 75 and 76: necessarily much advantaged over a
Page 77 and 78: among individuals and communities.
Page 79 and 80: needs. This was because distinguish
Page 81 and 82: systematic and transparent. In her
Page 83 and 84: why PHARMAC would subsidise unecono
Page 85: parents refusing treatment for thei
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 and 102: material and by working through the
Page 103 and 104: and printed copies of Hansard are a
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
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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
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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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