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

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Dr. Clark and his colleagues decided that the patients with the above list of cancers would no longer be selected for chemotherapy treatment on the basis of clinical need. This was because of the insufficient number of oncology doctors in the unit who were currently carrying an unbearably large workload. Dr. Clark had unsuccessfully appealed to the DHB for more funding for the service so that doctors could receive a higher salary and be attracted from other parts of New Zealand or from overseas to work in the service. They decided that only patients with the greatest ability to benefit from chemotherapy would be treated. An exception was made for patients who were involved with active clinical trials or patients who have ‘over-riding clinical circumstances’. All other patients suffering cancers on the list would not be offered any chemotherapy treatment. After receiving Dr. Clark’s letter under the first OIA request, I made a further OIA request for all journal articles, reports, papers or correspondence the doctors considered before coming to their decision. I was advised by the DHB that no journal articles, documents or reports were considered by the doctors when they came to the view that they did. They did not take minutes of meetings they held or kept a documentary record of the decisions which were reached, the matters they considered or the reasons why they made the decision to withhold treatment (Glubb, 2011). This action by the Chief Medical Officer and his colleagues moves the provision of cancer treatment in the MidCentral DHB to the moral position that the utilitarian principle, of the greatest good for the greatest number, will prevail over the principles of clinical need, fairness and equity or any other moral consideration. In coming to this decision, there was no consultation with the community because the decision was made by doctors acting alone and in secret 15 . There were no empirical clinical studies or documentary evidence considered by decision makers. The doctors used their ‘clinical experience’ in coming to this explicit rationing decision (Glubb, 2011). The decision makers also decided that patients who were in an active clinical trial were given an advantage over similar patients who were not in clinical trials. 15 The letter from Dr. Clark to the Chief Operating Officers of the DHBs involved was not released to the public by Dr. Clark, it was leaked to the press. 74
There was no clarity provided by the decision makers about patients who were refused treatment in the public hospital, if they could be treated in the private health system. For example, if they paid for the treatment or had the treatment provided under a private medical insurance scheme would they receive the chemotherapy treatment? If any of the doctors were intending to treat any patients privately, then the doctors would be (incidentally or purposefully) creating a private market for the treatment by refusing to provide it in the public system. Dr. Clark explained in his response to both OIA requests that wider workforce issues were at play in his decision. In his letter, he referred to the workload of the oncology doctors and this was the motivation behind the decisions which were taken. Dr. Clark appealed for more funding to be available for his department to attract oncology specialists to come from around New Zealand or overseas to MidCentral DHB to work. MidCentral Health were not asked to consider referring any overflow patients for their treatment (who could not be seen by the MidCentral Health Cancer Service) to one of the other treatment centres in the North Island, the South Island or Australia. Dr. Clark and his colleagues did not consider calling on the assistance of the Nurse Practitioners 16 who are specialist nurses trained in diagnosis and have prescribing rights. The Ministry of Health were not consulted on this decision or asked for advice about how the doctors’ workforce issues could be resolved (Glubb, 2011). No cost-benefit analysis was done to test the economic efficiency of the chosen policy option, neither was there any consultation on the emotional or social impact on the lives of the patients who were to be refused chemotherapy treatment for their cancer. Applying the Test-Questions An application of the test-questions is not designed to bring out a normative view which would apply in every case. This is because, as Gillon (2006) points 16 Details of Nurse Practitioners are available on the District Health Boards New Zealand website http://www.nursepractitioner.org.nz/Site/Future_Workforce/Nursing-Midwifery/Nursing-Projects/Nurse-Practitioners/NP- General-information.aspx 75
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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
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 and 86: parents refusing treatment for thei
Page 87: The first two test-questions covere
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
Page 137 and 138: 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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279
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281
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283
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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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