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

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the government to extend the use of PHARMAC’s cost-utility analysis processes (Ministerial Review Group, 2010). The report recommended other areas of public health and hospital procurement would benefit from creating PHARMAC-like savings. Since the Horn Report has been presented to the Minister of Health in 2011, the Cabinet has changed the role and focus of the National Health Committee (NHC)73. Recently, the Committee has been directed by the Minister to concentrate on “value for money” and “prioritising” existing and new publicly funded health services. The aim of the refocus is to develop systems for evaluating new technologies and assist the health and disability sector to direct its expenditure in ways that make effective improvements to the health status of New Zealanders. Dr. Anne Kolbe74has been appointed Chair of the NHC. She is also a PHARMAC Board Member and brings to the NHC governance experience of decision making based on clinical effectiveness and cost-utility analysis. The NHC’s Terms of Reference (published on their website75) state that in prioritising services, the NHC will apply criteria, agreed to by the Minister of Health, which place a strong focus on cost-effectiveness and affordability. Equity and fairness are not recognised explicitly (or at all) as important criteria in the value for money equation promulgated by the NHC. From the point of view of the individual (at the micro-rationing level), the use of the cost-utility analysis does militate against those who suffer rare diseases for which the treatment costs are very high. This was recognised by the McCormack Review of Funding for High-Cost Medicines in 2010. McCormack did not recommend the abandonment of the cost-utility analysis model, rather he suggested that high-cost medicines should not be treated any differently than lower cost medicines in that they should be subject to the same cost modelling. 73 http://www.nhc.health.govt.nz/moh.nsf/indexcm/nhc-aboutus-role 74 ://www.nhc.health.govt.nz/moh.nsf/indexcm/nhc-aboutus-members 75 http://www.nhc.health.govt.nz/moh.nsf/indexcm/nhc-aboutus-tor 230
Another form of decision making used by PHARMAC to determine allocations under the ‘Community Exceptional Circumstances’ policy has been the use of the definition of rarity, referred to in this thesis as the “10 cases” rule. This rule was applied to some claims and not applied to others. There was no rational basis for choosing this rule. A key informant interviewee said he/she felt the number 10 was a good idea and it “felt about right”’. Many contributors to this research stated that this was a mechanism for managing PHARMAC’s budgets rather than a definition of the term exceptional. Contributors said that it would be better for PHARMAC to drop the ‘10 cases’ rule and instead, where Community Exceptional Circumstances claims cannot be afforded PHARMAC should be open and say this is the real reason for the decision. Such an action would not please Ministers of Health, because pressure would be then directed at the government, implying that PHARMAC is not being provided with adequate resources to meet these exceptional needs. The second part of test-question 3 asks if there has been general agreement on how these substantive opportunities have been assessed. Theme 4, PHARMAC - No Stated Philosophy demonstrated that there was a range of opinion in New Zealand about how one should measure the costs and benefits of such spending. Behind any measure of good, value for money or a general public good, is a value proposition of the social conditions (Cheyne et al., 2008), the nature of the problem and the remedy which should prevail. No one philosophical position is agreed to manage such a proposition, other than the broad acceptance that PHARMAC is doing a good job and so its processes are reasonably effective and reasonably fair. Many contributors considered that the personal costs and benefits (to themselves and their families) should also be considered in the QALY measurement of the value of providing for meetable needs (Gillon, 2006) PHARMAC claims that the model must remain blind to a claimant’s personal circumstances because to do otherwise would create unfair, un-measurable and incomparable results and this would invalidate the cost-utility analysis. 231
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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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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
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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
Page 239 and 240: claimants (and unsuccessful drug co
Page 241 and 242: (2011-2012) in an open and transpar
Page 243: The cost-utility analysis system ha
Page 247 and 248: discuss how (or if) PHARMAC meets t
Page 249 and 250: Test-question 4 also raises the pro
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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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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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