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

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Ethical approval Ethical Approval to undertake this research was granted by the Auckland University of Technology Ethics Committee. Ethics Application Number: 07/196 Dated: 24 January 2008 xii
Abstract This thesis explores how government funded public health agencies distribute or ration resources to citizens. Utilising John Rawls’ (1971) and Amartya Sen’s (2009) principles of distributive justice, four test-questions are proposed to assist decision makers analyse the fairness and equity of their rationing decisions. PHARMAC, the agency responsible for the procurement and subsidisation of medicines in New Zealand, is used as an exemplar through which to investigate the elements of distributive justice described by Rawls and Sen. Specifically, research was conducted into PHARMAC’s ‘Community Exceptional Circumstances’ (CEC) policy. Under this policy, in a capped government funding environment, the pharmaceutical needs of the whole society are rationed against the needs of people whose needs are considered ‘exceptional’. Data were gathered from official documents, PHARMAC’s governing legislation and a New Zealand Court of Appeal case which tested the legal validity of the CEC policies and procedures. Data were also gathered through studying 23 media stories about CEC. Key informant interviews were conducted of past or present PHARMAC senior staff, Ministers of Health and patient advocate groups. The research shows that PHARMAC’s general allocative policies have been highly successful in procuring an adequate range of quality medicines at internationally low prices, saving the New Zealand health system approximately $1.17 billion in 14 years. This has been achieved by methods of utilitarian efficiency analysis (cost-utility analysis and Quality Adjusted Life Years) and careful purchasing decisions based on evidence of clinical effectiveness. PHARMAC has also taken advantage of its exemption from Part II of the New Zealand Commerce Act (1986) using market dominance to exercise monopsonistic procurement practices. PHARMAC has been accountable to Parliament and the public and demonstrated effective use of substantive opportunities imparting the greatest pharmaceutical benefits for the greatest number of people with the funding provided to it. However, PHARMAC’s success has been achieved, in part, by managing the claims of individuals in xiii
Page 1 and 2: How does the operation of PHARMAC
Page 3 and 4: Applying the Test-Questions .......
Page 5 and 6: Appendix 9: Analysis of Material Re
Page 7 and 8: List of Abbreviations ABS Australia
Page 9 and 10: Attestation of Authorship I hereby
Page 11: I gratefully acknowledge Major Camp
Page 15 and 16: Chapter 1: Introduction What is thi
Page 17 and 18: making? Should a person’s level o
Page 19 and 20: there is no mathematical calculatio
Page 21 and 22: health, disability, treatment of ol
Page 23 and 24: I then moved to the subject of rati
Page 25 and 26: In Chapter 3, New Zealand’s past
Page 27 and 28: Chapter 2: Background Introduction
Page 29 and 30: The following journals have no auto
Page 31 and 32: Technological and pharmaceutical di
Page 33 and 34: 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
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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.
Page 79 and 80:
needs. This was because distinguish
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systematic and transparent. In her
Page 83 and 84:
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
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
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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
Page 139 and 140:
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
Page 147 and 148:
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
Page 153 and 154:
the eight women involved in this ca
Page 155 and 156:
the plaintiffs adequate opportunity
Page 157 and 158:
Judge’s Concluding Remarks The fi
Page 159 and 160:
A Selection of the Media Stories Ca
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Case 4: “Worn out by endless figh
Page 163 and 164:
Case 6: “PHARMAC scolded for MS-d
Page 165 and 166:
The drug to treat Pompe’s Disease
Page 167 and 168:
The Voice of Patients and Family Me
Page 169 and 170:
Sclerosis Society did this three ti
Page 171 and 172:
was suffering would not pass the ra
Page 173 and 174:
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
Page 179 and 180:
the pharmaceutical schedule. The or
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No we have never thought that $3 mi
Page 183 and 184:
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,
Page 189 and 190:
key issue here. Some clinicians wer
Page 191 and 192:
I deeply suspect that Community Exc
Page 193 and 194:
should be developing the capacity o
Page 195 and 196:
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
Page 201 and 202:
and budget management. It says this
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
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The cost-utility analysis system ha
Page 245 and 246:
Another form of decision making use
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discuss how (or if) PHARMAC meets t
Page 249 and 250:
Test-question 4 also raises the pro
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
Page 273 and 274:
well placed to lead further researc
Page 275 and 276:
utilitarian principles of attemptin
Page 277 and 278:
stand up to the same rigorous clini
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
Page 293 and 294:
279
Page 295 and 296:
281
Page 297 and 298:
283
Page 299 and 300:
Appendix 8: Community Exceptional C
Page 301 and 302:
Ashton, T., & St John, S. (2008). N
Page 303 and 304:
Cohen, G. A. (2008). Rescuing Justi
Page 305 and 306:
Dew, K., Cumming, J., McLeod, D., M
Page 307 and 308:
Glubb, N. (2011). Official Informat
Page 309 and 310:
Holt, S., Harwood, M., Aldington, S
Page 311 and 312:
Lindblom, C. E. (1959). The Science
Page 313 and 314:
http://www.moh.govt.nz/moh.nsf/ea60
Page 315 and 316:
Cash Flows (Ed.), Government of New
Page 317 and 318:
PB/132 National Council of Women of
Page 319 and 320:
Romano, C. (2009). Amartya Sen Shak
Page 321 and 322:
Swedish Parliamentary Priorities Co
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