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

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process did not seem to be progressing. I had a good look at the applications and realised that this was in my estimation just too hard...rather cumbersome and quite difficult to get the outcome that was desired in a timely fashion. Q So you have done some [Community Exceptional Circumstances applications]? A Yes, but I generally go through a slightly different process which is more lobbying, talking to pharmaceutical companies, encouraging them to give compassionate access, then when it comes time for the funding application we ensure that we have a conversation with both parties. This is usually a more successful avenue than going through the Community Exceptional Circumstances process. (Interviewee H) ‘H’ found out that PHARMAC’s application of its rarity criteria was a major reason why they have not been successful in obtaining Community Exceptional Circumstances claims for HIV and AIDS sufferers. This is what ‘H’ had to say about how hard the process was for them: Q Why is it hard? A Well it’s hard because of their defining criteria. Particularly rare, less than 10 people with HIV? We have got 33.4 million people around the world, so it’s not a rare condition. The numbers of people in New Zealand are quite small, but it is still not classified as a rare condition. Q Is that what stumps you? A That’s a huge stumbling block…by only allowing it to be for a rare condition. And everyone has a different understanding of what ‘rare’ is. Rare globally or ‘rare’ in New Zealand? Is it ‘rare’ within a specific demographic or ethnic group? So ‘rare’ is a catch phrase which can be used to stop you in a number of different ways. (Interviewee H) The example of the successful gaining of a Community Exceptional Circumstances subsidy for an AIDS drug named Kaletra was raised with ‘H’. The discussion lays out the history of the claim and the result. 188
Q Do you recall the Kaletra issues and the Community Exceptional Circumstances application? A I do recall it, yes. When I came in to the Foundation, the [Community Exceptional Circumstances] application had already been submitted. I came in on the back of that process. My predecessor was the one that actually did the submission. I came in and it wasn’t really going anywhere. Yes, the process at that time had not worked through the Community Exceptional Circumstances process …it is a hard ask at the best of times. Q However, the Kaletra example is where PHARMAC stepped outside from the Community Exceptional Circumstances criteria? A They did. This [application] in the end was not worked through the Community Exceptional Circumstances process as you would expect. The relationship stuff has a huge impact in New Zealand. It is such a small country…90% of it was talk to the pharmaceutical companies, talk to the specialists, do some lobbying with guys like Peter Dunne 61 , get the word around…so that was fairly easy to get through by negotiating with PHARMAC but again I think it would have been a very different story if we had have gone down the Community Exceptional Circumstances road alone. (Interviewee H) The Foundation had such little faith in the Community Exceptional Circumstances process that when a case came along where the AIDS Foundation had a good chance of gaining a Community Exceptional Circumstances subsidy, they did not make an application. ‘H’ describes why. Q But for your Foundation it is a far more agreeable process to go straight for scheduling of drugs and forget about Community Exceptional Circumstances altogether? A Yes…I have found this is the best way …for Fuzeon, it is an injectable antiretroviral, and we worked with the pharmaceutical company to get access to the drug on compassionate grounds… until such time as we got it through… we got it through fairly quickly as 61 Hon. Peter Dunne is a Member of Parliament who leads the United Future political party. He held the position of Minister of Revenue and Associate Minister of Health (posts outside of Cabinet) until November 2008. He has had a particular interest in PHARMAC over his political career. 189
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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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Page 157 and 158: Judge’s Concluding Remarks The fi
Page 159 and 160: A Selection of the Media Stories Ca
Page 161 and 162: Case 4: “Worn out by endless figh
Page 163 and 164: Case 6: “PHARMAC scolded for MS-d
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Page 167 and 168: The Voice of Patients and Family Me
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Page 171 and 172: was suffering would not pass the ra
Page 173 and 174: Eight of the twelve persons approac
Page 175 and 176: Part II: The Key Informant Intervie
Page 177 and 178: agreed this was done. Secondly, PHA
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Page 181 and 182: No we have never thought that $3 mi
Page 183 and 184: Insights were given as to the indep
Page 185 and 186: and Now some people can say that’
Page 187 and 188: Q Be a voice for the family? A Yes,
Page 189 and 190: key issue here. Some clinicians wer
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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 205 and 206: Q Can I ask you about PHARMAC’s c
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Page 209 and 210: This was also done for the hard cop
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Page 217 and 218: with the application. The discharge
Page 219 and 220: Again no report was attached from t
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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 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
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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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