Chapter 1 - Introduction

[1]        Journals of the Senate, No. 21, 29 November 2016, pp 662–663.

[2]        Journals of the Senate, No. 21, 29 November 2016, p. 662.

[3]        Low Survival Cancers Alliance, Submission 90 p. 1. The other members of the alliance are the Asbestos Council of Victoria, AsbestosWise, the Bernie Banton Foundation, Brain Tumour Alliance Australia, the Isabella & Marcus Fund, the Lung Foundation Australia, Pancare, Robert Connor Dawes and the Unicorn Foundation.

[4]        Cancer Voices Australia, Submission 61, p. 1.

[5]        Australasian Gastro-Intestinal Trials Group, Submission 85, p. 1.

[6]        Cancer Australia, Submission 129, p. 1.

[7]        Cancer Australia, Submission 129, p. 1.

[8]        Australian Institute of Health and Welfare (AIHW), Submission 83, p. 2.

[9]        AIHW, Submission 83, p. 2.

[10]      Rare Cancers Australia, Submission 50, p. 1.

[11]      The Hon. Greg Hunt MP, 'Medical research reforms to improve our future health, Media Release, 25 May 2017.

[12]      The Hon. Greg Hunt MP, 'Major new measures to help combat rare cancers', Media Release, 24 August 2017, p. 1.           

[13]      The Hon. Greg Hunt MP, 'Major new measures to help combat rare cancers', Media Release, 24 August 2017, p. 1.

[14]      The Hon. Greg Hunt MP, 'Australian Brain Cancer Mission', Media Release, 29 October 2017.

Chapter 2 - Funding for research into low survival rate cancers

* A maximum of two applications per round can be submitted by any individual across the Investigator, Synergy and Ideas Grant schemes. I.e. individuals may only apply for one Investigator Grant and/or one Synergy Grant and/or up to two Ideas Grants in a given application round.

[1]        See, for example, UNSW Sydney & SPHERE, Submission 48, p. 3; Ovarian Cancer Australia, Submission 242, p. 4; Professor David Walker, Submission 269, pp 2–3.

[2]        See, The Hon. Greg MP, 'Medical research reforms to improve our future health, Media Release, 25 May 2017.

[3]        Cancer Australia, Cancer Research in Australia 2016 to 2018 - Opportunities for strategic research investment – Highlights, 2016.

[4]        Cancer Australia, Cancer Research in Australia 2016 to 2018 - Opportunities for strategic research investment – Highlights, 2016, p. 1.

[5]        Cancer Australia, Cancer Research in Australia 2016 to 2018 - Opportunities for strategic research investment – Highlights, 2016, p. 1.

[6]        Cancer Australia, Cancer Research in Australia 2016 to 2018 - Opportunities for strategic research investment – Highlights, 2016, p. 2.

[7]        Cancer Australia, Cancer Research in Australia 2016 to 2018 - Opportunities for strategic research investment – Highlights, 2016, p. 2.

[8]        Cancer Australia, Cancer Research in Australia 2016 to 2018 - Opportunities for strategic research investment – Highlights, 2016, p. 3. This classification system is also used by the International Research Partnership.

[9]        Cancer Australia, Cancer Research in Australia 2016 to 2018 - Opportunities for strategic research investment – Highlights, 2016, p. 3.

[10]      Cancer Australia, Cancer Research in Australia 2016 to 2018 - Opportunities for strategic research investment – Highlights, 2016, p. 3.

[11]      Low Survival Cancers Alliance (LSCA), Submission 90, p. 2.

[12]      The Unicorn Foundation, Submission 101, p. 4.

[13]      Professor Anne Kelso, Chief Executive Officer (CEO), National Health and Medical Research Council (NHMRC), Committee Hansard, 19 May 2017, p. 30.

[14]      Professor Stephen Fox, Director of Pathology, Peter MacCallum Cancer Centre, Committee Hansard, 4 August 2017, p. 32.

[15]      Professor Manuel Graeber, Barnet-Cropper Chair of Brain Tumour Research, Brain and Mind Centre, University of Sydney, Committee Hansard, 18 May 2017, p. 63.

[16]      Cancer Australia, Cancer Research in Australia 2016 to 2018 - Opportunities for strategic research investment – Highlights, 2016, p. 4.

[17]      National Health and Medical Research Council Act 1992, s. 5C.

[18]      National Health and Medical Research Council Act 1992, ss. 7(1).

[19]      National Health and Medical Research Council Act 1992, s. 82.

[20]      Established pursuant to s. 20 of the National Health and Medical Research Council Act 1992.

[21]      National Health and Medical Research Council Act 1992, s. 21.

[22]      Mr Greg Mullins, Head of Policy, Research Australia, Committee Hansard, 7 June 2017, p. 43.

[23]      Mr Mullins, Research Australia, Committee Hansard, 7 June 2017, p. 46.

[24]      Mr Mullins, Research Australia, Committee Hansard, 7 June 2017, p. 46.

[25]      Dr Bryan William Day, Team Head, Translational Brain Cancer Research Laboratory, QIMR Berghofer Medical Research Institute (QIMR Berghofer), Committee Hansard, 6 June 2017, p. 38.

[26]      NHMRC, Submission 87, p. 3.

[27]      NHMRC, Submission 87, p. 3 (citations omitted).

[28]      NHMRC, Submission 87, p. 3.

[29]      NHMRC, Submission 87, p. 4 (citations omitted).

[30]      NHMRC, Submission 87, p. 4.

[31]      NHMRC, Submission 87, Attachment A, p. 7.

[32]      NHMRC, Submission 87, Attachment A, p. 7.

[33]      NHMRC, Submission 87, Attachment A, p. 8.

[34]      NHMRC, Submission 87, Attachment A, p. 8. See: Australian Institute for Health and Welfare (AIHW), Cancer in Australia 2017, Cancer series no. 101, 2017, Appendix B, pp 149–151. Figures for leukaemia were not from another AIHW report.

[35]      NHMRC, Submission 87, Attachment A, p. 8.

[36]      See, for example, Pancare Foundation, Submission 9, p. 2; Love for Lachie, Submission 120, p. 2.

[37]      See, for example, The Walter and Eliza Hall Institute of Medical Research (Walter and Eliza Hall Institute), Submission 126 pp 3–4; Mr Daniel Robinson, Submission 227, p. 1.

[38]      See, for example, Brain Cancer Biobanking Australia, Submission 119, p. 2; Ms Marilyn Nelson, Submission 241, p. 5; Ms Michelle Stewart, Head of Research Strategy, Cure Brain Cancer Foundation (CBCF), Committee Hansard, 6 June 2017, p. 23; Professor Rosalie Viney, Member, Australian Health Economics Society (AHES), Committee Hansard, 29 August 2017, p.2.

[39]      Children's Cancer Research Unit, The Children's Hospital at Westmead (CCRU), Submission 88, p. 2.

[40]      LSCA, Submission 90, p. 2.

[41]      LSCA, Submission 90, p. 2.

[42]      Dr Marina Pajic, Group Leader, Garvan Institute of Medical Research, Committee Hansard, 7 June 2017, p. 53.

[43]      Australasian Leukaemia and Lymphoma Group (ALLG), Submission 121, p. 1.

[44]      Research Australia, Submission 122, p. 7.

[45]      Research Australia, Submission 122, p. 7.

[46]      Victorian Comprehensive Cancer Centre (VCCC), Submission 114, p. 2.

[47]      VCCC, Submission 114, p. 1.

[48]      VCCC, Submission 114, pp 1–2.

[49]      Research Australia, Submission 122, pp 7–8.

[50]      NHMRC, Reviewing the structure of NHMRC’s grant program, 16 May 2016, https://www.nhmrc.gov.au/media/nhmrc_updates/2016/reviewing-structure-nhmrc-s-grant-program (accessed 12 October 2017).

[51]      NHMRC, Structural Review of NHMRC’s Grant Program: Consultation Paper, July 2016, p. 10.

[52]      CCRU, Submission 88, p. 1.

[53]      NHMRC, Structural Review of NHMRC’s Grant Program: Consultation Paper, July 2016, p. 10.

[54]      NHMRC, Structural Review of NHMRC’s Grant Program: Consultation Paper, July 2016, p. 10.

[55]      NHMRC, Structural Review of NHMRC’s Grant Program: Consultation Paper, July 2016, p. 11.

[56]      NHMRC, Structural Review of NHMRC’s Grant Program: Consultation Paper, July 2016, p. 11.

[57]      NHMRC, Structural Review of NHMRC’s Grant Program, 2 June 2017, https://www.nhmrc.gov.au/grants-funding/structural-review-nhmrc-s-grant-program (accessed 12 October 2017).

[58]      NHMRC, Structural Review of NHMRC’s Grant Program - Public Consultation, 2 June 2017, https://www.nhmrc.gov.au/grants-funding/structural-review-nhmrc-s-grant-program/structural-review-nhmrc-s-grant-program (accessed 12 October 2017).

[59]      NHMRC, Structural Review of NHMRC’s Grant Program, 2 June 2017, https://www.nhmrc.gov.au/grants-funding/structural-review-nhmrc-s-grant-program (accessed 12 October 2017).

[60]      NHMRC, Structural Review of NHMRC’s Grant Program, 2 June 2017, https://www.nhmrc.gov.au/grants-funding/structural-review-nhmrc-s-grant-program (accessed 12 October 2017).

[61]      The Hon. Greg Hunt MP, 'Medical research reforms to improve our future health, Media Release, 25 May 2017.

[62]      NHMRC, The Changes, 21 September 2017, https://www.nhmrc.gov.au/restructure/changes (accessed 12 October 2017).

[63]      NHMRC, The Changes, 21 September 2017, https://www.nhmrc.gov.au/restructure/changes (accessed 12 October 2017).

[64]      NHMRC, The Changes, 21 September 2017, https://www.nhmrc.gov.au/restructure/changes (accessed 12 October 2017).

[65]      Professor Kelso, NHMRC, Committee Hansard, 29 August 2017, p. 28.

[66]      Professor Kelso, NHMRC, Committee Hansard, 29 August 2017, p. 28.

[67]      Dr David Whiteman, Deputy Director, QIMR Berghofer, Committee Hansard, 6 June 2017, p. 43.

[68]      Professor Linda Richards, Deputy Director, Research, Queensland Brain Institute (QBI), The University of Queensland (UQ), Committee Hansard, 6 June 2017, p. 14.

[69]      Dr Jens Bunt, Research Fellow and Team Leader, NFI Research Lines, Brain Development and Disorders Laboratory, QBI, UQ, Committee Hansard, 6 June 2017, p. 15.

[70]      Ms Emma Raymond, Theme Leader, Cancer, Wesley Medical Research, Committee Hansard, 6 June 2017, p. 30.

[71]      Mr Mullins, Research Australia, Committee Hansard, 7 June 2017, p. 43.

[72]      Mr Mullins, Research Australia, Committee Hansard, 7 June 2017, p. 46.

[73]      Dr Elizabeth Johnson, Program Manager, VCCC, Committee Hansard, 7 June 2017, p. 41.

[74]      Cancer Australia, About us, https://canceraustralia.gov.au/about-us (accessed 16 October 2017).

[75]      Cancer Australia Act 2006, ss. 7(1).

[76]      Cancer Australia Act 2006, para. 7(1)(e).

[77]      Cancer Australia, Submission 129, p. 3.

[78]      Cancer Australia, Submission 129, p. 3.

[79]      Dr Paul Jackson, Acting General Manager, Knowledge Management, Cancer Australia, Committee Hansard, 29 August 2017, p. 21.

[80]      Dr Jackson, Cancer Australia, Committee Hansard, 29 August 2017, p. 21.

[81]      Dr Whiteman, QIMR Berghofer, Committee Hansard, 6 June 2017, p. 39.

[82]      See, for example, Mrs Tricia Berman, Secretary, Brain Tumour Alliance Australia (BTAA), Committee Hansard, p. 47.

[83]      Ms Delaine Smith, CEO, ALLG, Committee Hansard, 7 June 2017, p. 33.

[84]      Mr James Armstrong, Member, Consumer Advisory Panel, GI-Cancer Institute, Australasian Gastro-Intestinal Trials Group, Committee Hansard, 18 May 2017, p. 49.

[85]      The Department of Health (DoH), Further information on the Medical Research Future Fund, 9 May 2017, http://www.health.gov.au/internet/main/publishing.nsf/Content/mrff-more (accessed 11 October 2017).

[86]      DoH, Further information on the Medical Research Future Fund, 9 May 2017, http://www.health.gov.au/internet/main/publishing.nsf/Content/mrff-more (accessed 11 October 2017).

[87]      DoH, Further information on the Medical Research Future Fund, 9 May 2017, http://www.health.gov.au/internet/main/publishing.nsf/Content/mrff-more (accessed 11 October 2017).

[88]      Medical Research Future Fund Act 2015, s. 4.

[89]      Medical Research Future Fund Act 2015, s. 32D–s. 32EA.

[90]      Professor Ian Frazer, Chair, Australian Medical Research Advisory Board (AMRAB), Committee Hansard, 8 June 2017, p. 48.

[91]      Professor Frazer, AMRAB, Committee Hansard, 8 June 2017, p. 48.

[92]      Medical Research Future Fund Act 2015, s. 32EA.

[93]      DoH, Australian Medical Research and Innovation Strategy 2016–2021, 9 November 2016, p. 7 (tabled 29 August 2017).

[94]      DoH, Australian Medical Research and Innovation Strategy 2016–2021, 9 November 2016, p. 7 (tabled 29 August 2017).

[95]      DoH, Australian Medical Research and Innovation Strategy 2016–2021, 9 November 2016, pp 3–5 (tabled 29 August 2017).

[96]      DoH, Australian Medical Research and Innovation Strategy 2016–2021, 9 November 2016, pp 5–7 (tabled 29 August 2017).

[97]      DoH, Australian Medical Research and Innovation Strategy 2016–2021, 9 November 2016, pp 7–8 (tabled 29 August 2017).

[98]      DoH, Australian Medical Research and Innovation Strategy 2016–2021, 9 November 2016, p. 8 (tabled 29 August 2017).

[99]      DoH, Australian Medical Research and Innovation Strategy 2016–2021, 9 November 2016, p. 8 (tabled 29 August 2017).

[100]    DoH, Australian Medical Research and Innovation Strategy 2016–2021, 9 November 2016, p. 9 (tabled 29 August 2017).

[101]    DoH, Australian Medical Research and Innovation Priorities 2016–2018, 9 November 2016, p. 9 (tabled 29 August 2017).

[102]    DoH, Australian Medical Research and Innovation Strategy 2016–2021, 9 November 2016, p. 10 (tabled 29 August 2017).

[103]    Professor Frazer, AMRAB, Committee Hansard, 8 June 2017, p. 49.

[104]    Professor Viney, AHES, Committee Hansard, 29 August 2017, p. 6.

[105]    Dr Richard De Abreu Lourenco, Member, AHES, Committee Hansard, 29 August 2017, p. 7.

[106]    DoH, Medical Research Future Fund – Overview of the Medical Research Future Fund, 5 August 2017, http://www.health.gov.au/internet/main/publishing.nsf/Content/medical-research-future-fund-mrff-overview-budget-2017 (accessed 11 October 2017).

[107]    Professor Terrance Johns, Director, Brain Cancer Discovery Collaborative, Committee Hansard, 18 May 2017, p. 25.

[108]    Professor Johns, Brain Cancer Discovery Collaborative, Committee Hansard, 18 May 2017, p. 26.

[109]    Mr Peter Orchard, CEO, CanTeen Australia, Committee Hansard, 19 May 2017, p. 6.

[110]    Mr Mullins, Research Australia, Committee Hansard, 7 June 2017, p. 43.

[111]    ANZCHOG National Patient and Carer Advisory Group, Submission 125, p. 7.

[112]    Mark Hughes Foundation (MHF), Submission 113, p. 3.

[113]    Professor Mark Rosenthal, Clinical Trials Lead, VCCC, Committee Hansard, 7 June 2017, p. 39.

[114]    Associate Professor Gavin Wright, Research and Education Lead, Lung Cancer, VCCC, Committee Hansard, 7 June 2017, p. 39.

[115]    Dr Johnson, VCCC, Committee Hansard, 7 June 2017, p. 40.

[116]    Research Australia, Submission 122, p. 8.

[117]    Professor Guy Eslick, Submission 51, p. 9.

[118]    Professor Eslick, Submission 51, pp 9–10.

[119]    Professor Eslick, Submission 51, p. 10.

[120]    Lung Foundation Australia, Submission 89, Annexure: Improving outcomes for Australians with lung cancer. A Call to Action, p. 4. 

[121]    MHF, Submission 113, p. 4.

[122]    Ovarian Cancer Australia, Submission 242, p. 4.

[123]    Mr Todd Harper, CEO, Cancer Council Victoria, Committee Hansard, 18 May 2017, p. 31.

[124]    Professor Clare Scott, Head, Rare Cancer Research, Walter and Eliza Hall Institute, Committee Hansard, 4 August 2017, p. 13.

[125]    See, for example, Mr Peter Kempen, Chairman of the Board, ALLG, Committee Hansard, 7 June 2017, p. 35; Professor David Thomas, Director, The Kinghorn Cancer Centre; Head, Cancer Research Division, Garvan Institute (Garvan Institute), Committee Hansard, 8 June 2017, p. 32.

[126]    Roche Products Pty Limited (Roche), Submission 124, p. 6.

[127]    Roche, Submission 124, p. 3.

[128]    Roche, Submission 124, p. 3.

[129]    Deloitte Access Economics (Deloitte), The New Wave of Immunotherapy Cancer Medicines –The Untapped Potential for Australians, October 2017, p. 61.

[130]    Medicines Australia, Submission 141, p. 9.

[131]    See, for example, CanTeen Australia, Submission 128, p. 3; Dr Robert De Rose, Co-founder, The Isabella and Marcus Paediatric Brainstem Tumour Fund (The Isabella and Marcus Fund), Committee Hansard, 7 June 2017, p. 59.

[132]    Professor Walker, Committee Hansard, 6 June 2017, p. 48.

[133]    Professor Richards, QBI, UQ, Committee Hansard, 6 June 2017, p. 20.

[134]    Professor Richards, QBI, UQ, Committee Hansard, 6 June 2017, p. 20.

[135]    ANZCHOG National Patient and Carer Advisory Group, Submission 125, p. 7. 

[136]    Mrs Therese Townsend, Submission 46, p. 1.

[137]    Dr Chris Fraser, Chair, Australian and New Zealand Children's Haematology and Oncology Group (ANZCHOG), Committee Hansard, 7 June 2017, p. 20.

[138]    Dr Fraser, ANZCHOG, Committee Hansard, 7 June 2017, p. 20.

[139]    Garvan Institute, Submission 34, p. 9 (citations omitted).

[140]    Garvan Institute, Submission 34, p. 9.

[141]    Professor Thomas, Garvan Institute, Committee Hansard, 8 June 2017, p. 33.

[142]    Professor Thomas, Garvan Institute, Committee Hansard, 8 June 201, p. 31.

[143]    Medicines Australia, answers to questions on notice, 8 June 2017, (received 20 October 2017), p. 1.

[144]    Medicines Australia, answers to questions on notice, 8 June 2017, (received 20 October 2017), p. 2.

[145]    Medicines Australia, answers to questions on notice, 8 June 2017, (received 20 October 2017), p. 1.

[146]    Professor Andrew Wilson, Chair, Pharmaceutical Benefits Advisory Committee (PBAC), Committee Hansard, 29 August 2017, p. 18.

[147]    Senate Community Affairs References Committee, Availability of new, innovative and specialist cancer drugs in Australia, September 2015, pp 10–11.

[148]    For the principles and methodologies used by the PBAC, see: DoH, Guidelines for preparing a submission to the Pharmaceutical Benefits Advisory Committee, September 2016, p. 4.

[149]    National Health Act 1953, s. 100A.

[150]    Professor Wilson, PBAC, Committee Hansard, 29 August 2017, p. 10.

[151]    Professor Wilson, PBAC, Committee Hansard, 29 August 2017, p. 10.

[152]    DoH, Health Technology Assessment (HTA) overview, 7 March 2017 (accessed 1 November 2017). 

[153]    The Hon. Peter Dutton, MP, Minister for Health and Senator The Hon Fiona Nash, Assistant Minister for Health, 'Expert Panel to Review Medicines and Medical Devices Regulation', Media Release, 24 October 2014.

[154]    Expert Panel Review of Medicines and Medical Devices Regulation, Recommendations to the Minister for Health on the Regulatory Frameworks for Medicines, Medical Devices, Complementary Medicines and Advertising of Therapeutic Goods, 31 July 2015.

[155]    Australian government, Australian Government Response to the Review of Medicines and Medical Devices Regulation, 15 September 2016, p. 4.

[156]    Australian government, Australian Government Response to the Review of Medicines and Medical Devices Regulation, 15 September 2016, p. 5.

[157]    Australian government, Australian Government Response to the Review of Medicines and Medical Devices Regulation, 15 September 2016, p. 6.

[158]    Therapeutic Goods Administration (TGA), Medicines and medical devices regulation review, 28 August 2017, https://www.tga.gov.au/mmdr (accessed 13 November 2017).

[159]    TGA, Medicines and medical devices regulation review, 28 August 2017, https://www.tga.gov.au/mmdr (accessed 13 November 2017).

[160]    TGA, Medicines and medical devices regulation review, 28 August 2017, https://www.tga.gov.au/mmdr (accessed 13 November 2017).

[161]    TGA, Priority review pathway: prescription medicines, 26 June 2017, https://www.tga.gov.au/priority-review-pathway-prescription-medicines (accessed 13 November 2017).

[162]    TGA, Medicines and medical devices regulation review, 28 August 2017, https://www.tga.gov.au/mmdr (accessed 13 November 2017).

[163]    Senate Community Affairs References Committee, Availability of new, innovative and specialist cancer drugs in Australia, September 2015.

[164]    Senate Community Affairs References Committee, Availability of new, innovative and specialist cancer drugs in Australia, September 2015, pp 109–110.

[165]    Senate Community Affairs References Committee, Availability of new, innovative and specialist cancer drugs in Australia, September 2015, pp 110–112.

[166]    Australian government, Australian Government response to the Senate Community Affairs References Committee Report: Availability of new, innovative and specialist cancer drugs in Australia, November 2017, p. 6.

[167]    Australian government, Australian Government response to the Senate Community Affairs References Committee Report: Availability of new, innovative and specialist cancer drugs in Australia, November 2017, p. 7.

[168]    Australian government, Australian Government response to the Senate Community Affairs References Committee Report: Availability of new, innovative and specialist cancer drugs in Australia, November 2017, p. 9.

[169]    Professor R John Simes, Executive Member, Cooperative Trials Group for Neuro-Oncology; and Director, NHMRC Clinical Trials Centre, University of Sydney, Committee Hansard, 18 May 2017, p. 53.

[170]    Medicines Australia, Submission 142 to the Senate Community Affairs References Committee, Availability of new, innovative and specialist cancer drugs in Australia, September 2015, p. 14 (citations omitted).

[171]    Deloitte, A Collaborative Assessment of Access to Cancer Medicines in Australia, May 2017, p. 16.

[172]    Medicines Australia, answers to questions on notice, 8 June 2017, (received 20 October 2017), p. 8.

[173]    Medicines Australia, answers to questions on notice, 8 June 2017, (received 20 October 2017), p. 9.

[174]    Senate Community Affairs References Committee, Availability of new, innovative and specialist cancer drugs in Australia, September 2015, p. 17.

[175]    Senate Community Affairs References Committee, Availability of new, innovative and specialist cancer drugs in Australia, September 2015, p. 17 (citations omitted).

[176]    Senate Community Affairs References Committee, Availability of new, innovative and specialist cancer drugs in Australia, September 2015, pp 17–18 (citations omitted).

[177]    Dr Nicola Waddell, Group Leader, Medical Genomics Group, QIMR Berghofer, Committee Hansard, 6 June 2017, p. 45.

[178]    Deloitte, The New Wave of Immunotherapy Cancer Medicines –The Untapped Potential for Australians, October 2017, p. 51.

[179]    Professor Wilson, PBAC, Committee Hansard, 29 August 2017, p. 12.

[180]    Professor Thomas, Garvan Institute, Committee Hansard, 8 June 2017, p. 31.

[181]    Cancer Australia, Submission 129, p. 5. This excludes data for acute myeloid leukaemia, which was not available.

[182]    Cancer Australia, Submission 129, p. 4.

[183]    Cancer Australia, Cancer Research in Australia: an overview of funding initiatives to support cancer research capacity in Australia 2006 to 2011, 2015, p. 112.

[184]    Cancer Australia, Cancer Research in Australia: an overview of funding initiatives to support cancer research capacity in Australia 2006 to 2011, 2015, p. 112.

[185]    Cancer Australia, Cancer Research in Australia: an overview of funding initiatives to support cancer research capacity in Australia 2006 to 2011, 2015, p. 113.

[186]    See, for example, Ms Christine Jones, Submission 6; Asbestos Council of Victoria/GARDS, Submission 30; Mrs Madeline Bishop, Submission 35.

[187]    See, for example, Mrs Sandra Joy Woods, Committee Hansard, 18 May 2017, p. 5; Mrs Nicole Mills, Executive Officer, Rare Voices Australia, Committee Hansard, 7 June 2017, p. 26; Mrs Berman, BTAA, Committee Hansard, 8 June 2017, p. 39.

[188]    CBCF, Submission 139, p. 6.

[189]    Cancer Australia, Cancer Research in Australia: an overview of funding initiatives to support cancer research capacity in Australia 2006 to 2011, 2015, p. 19.

[190]    Cancer Australia, Cancer Research in Australia: an overview of funding initiatives to support cancer research capacity in Australia 2006 to 2011, 2015, p. 19.

[191]    AIHW, answers to questions on notice, 8 June 2017, (received 3 July 2017), p. 11.

[192]    AIHW, answers to questions on notice, 8 June 2017, (received 3 July 2017), p. 11.

[193]    AIHW, answers to questions on notice, 8 June 2017, (received 3 July 2017), p. 12.

[194]    Ms Elizabeth de Somer, Director of Policy and Research, Medicines Australia, Committee Hansard, 8 June 2017, p. 21.

[195]    CBCF, Submission 139, p. 6.

[196]    CBCF, Submission 139, p. 6.

[197]    Mrs Evangeline Lim, Committee Hansard, 6 June 2017, p. 3.

[198]    The Hon. Greg Hunt MP, 'Major new measures to help combat rare cancers', Media Release, 24 August 2017, p. 1.

[199]    DoH, Rare Cancers and Rare Diseases - Research Grants, 24 August 2017, http://www.health.gov.au/internet/main/publishing.nsf/Content/mrff-rare-cancers-rare-diseases-grants-2017 (accessed 11 October 2017).

[200]    DoH, answers to questions on notice, 29 August 2017, (received 22 September 2017).

[201]    Mr Nicholas Hartland, First Assistant Secretary, Research, Data and Evaluation, DoH, Committee Hansard, 29 August 2017, p. 9.

[202]    Ms Erica Kneipp, Assistant Secretary, DoH, Committee Hansard, 29 August 2017, p. 11.

[203]    Ms Kneipp, DoH, Committee Hansard, 29 August 2017, p. 11.

[204]    DoH, Medical Research Future Fund - Lifting Clinical Trials and Registries Capacity (LCTRC) Grant Guidelines, 24 August 2017, pp 13–17 (tabled 29 August 2017).

[205]    See, for example, The Unicorn Foundation, Submission 101, p. 5; The University of Newcastle and Hunter Medical Research Institute, Submission 132, p. 2; Professor Thomas, Garvan Institute, Committee Hansard, 8 June 2017, p. 36.

[206]    Professor Kelso, NHMRC, Committee Hansard, 29 August 2017, p. 27.

[207]    Associate Professor Wright, VCCC, Committee Hansard, 7 June 2017, pp 36–37.

[208]    Dr Robert De Rose, Co-founder, The Isabella and Marcus Fund, Committee Hansard, 7 June 2017, p. 58.

[209]    Pursuant to s. 15A of the Medical Research Future Fund Act 2015.

[210]    Professor Frazer, AMRAB, Committee Hansard, 8 June 2017, pp 48–49.

[211]    Professor Frazer, AMRAB, Committee Hansard, 8 June 2017, p. 49.

[212]    The Hon. Greg Hunt MP, 'Major new measures to help combat rare cancers', Media Release, 24 August 2017, p. 1.

[213]    The Hon. Greg Hunt MP, 'Australian Brain Cancer Mission', Media Release, 29 October 2017.

[214]    National Health and Medical Research Council Act 1992, s 5D. 

[215]    NHMRC, Major health issues, https://www.nhmrc.gov.au/book/nhmrc-corporate-plan-2016-2017/nhmrc-s-strategic-direction/major-health-issues (accessed 22 November2017). 

[216]    NHMRC, National Health and Medical Research Council Corporate Plan 2017-18, https://www.nhmrc.gov.au/_files_nhmrc/file/grants/apply/17293_nhmrc_corporate_plan_2017-18-web.pdf (accessed 22 November 2017), p. 18. 

[217]    NHMRC, National Health and Medical Research Council Corporate Plan 2017-18, p. 18. 

Chapter 3 - Clinical trials for people with low survival rate cancers

[1]        Garvan Institute of Medical Research/ The Kinghorn Cancer Centre/ The Garvan Research Foundation (Garvan Institute), Submission 34, p. 5. The Garvan Institute defines rare and less common cancers as those 'affecting up to 12 in 100,000 people', which 'account for 23.7% of cancers diagnosed, and 38.5% of cancer deaths': p. 2.

[2]        Garvan Institute, Submission 34, p. 5.

[3]        Garvan Institute, Submission 34, p. 4.

[4]        The Walter and Eliza Hall Institute of Medical Research (Walter and Eliza Hall Institute), Submission 126, p. 5.

[5]        Namely, '[t]reatment that is accepted by medical experts as a proper treatment for a certain type of disease and that is widely used by healthcare professionals. Also called best practice, standard medical care, and standard therapy' – see, National Cancer Institute, NCI Dictionary of Cancer Terms, https://www.cancer.gov/publications/dictionaries/cancer-terms?cdrid=346525 (accessed 3 November 2017).

[6]        Mr Tim Eliot, Submission 43, p. 2.

[7]        Mr Eliot, Submission 43, pp 2–3.

[8]        Mr Eliot, Submission 43, p. 3.

[9]        Mr Eliot, Submission 43, p. 3.

[10]      Mr Eliot, Submission 43, p. 3.

[11]      Cure Brain Cancer Foundation, Submission 139, p. 8.

[12]      Mrs Raechel Burgett, Submission 53, p. 1.

[13]      See, for example, Mrs Sandra Woods, Submission 7, p. 3; Mrs Michelle Patterson, Submission 13, p. 1; Ms Sherrin Bell, Submission 276, p. 3.

[14]      Ms Marilyn Nelson, Committee Hansard, 6 June 2017, p. 7.

[15]      Professor Mark Hertzberg, Member and Director, Australasian Leukaemia and Lymphoma Group (ALLG), Committee Hansard, 7 June 2017, p. 31.

[16]      Professor David Walker, Committee Hansard, 6 June 2017, p. 51.

[17]      Ms Julie Marker, Executive Teams, Cancer Voices Australia and Cancer Voices South Australia, Committee Hansard, 18 May 2017, p. 16.

[18]      Mr Evan Shonk and Mrs Suzanne Turpie, Committee Hansard, 18 May 2017, p. 8.

[19]      Ms Jill Emberson, Patient and Consumer Advocate, Ovarian Cancer Australia, Committee Hansard, 4 August 2017, p. 4.

[20]      Mr William Williams, Committee Hansard, 8 June 2017, p. 5.

[21]      Mr Todd Andrew Harper, Chief Executive Officer, Cancer Council Victoria (CCV), Committee Hansard, 4 August 2017, p. 34.

[22]      Cancer Australia, Submission 129, p. 7.

[23]      Dr Alison Butt, Senior Scientific Officer, Cancer Australia, Committee Hansard, 29 August 2017, p. 25.

[24]      See, for example, Ms Christine Christensen, Chair, Cancer Voices South Australia, and Executive Member, Cancer Voices Australia, Committee Hansard, 18 May 2017, p. 18.

[25]      Mr Greg Mullins, Head of Policy, Research Australia, Committee Hansard, 7 June 2017, p. 45.

[26]      Professor R John Simes, Executive Member, Cooperative Trials Group for Neuro-Oncology; and Director, NHMRC Clinical Trials Centre, University of Sydney, Committee Hansard, 18 May 2017, p. 47.

[27]      Professor Simes, Cooperative Trials Group for Neuro-Oncology and University of Sydney, Committee Hansard, 18 May 2017, pp 47–48.

[28]      Mrs Madeline Bishop, Submission 35, p. 2.

[29]      Ms Susan Pitt, Committee Hansard, 8 June 2017, p. 11.

[30]      National Health and Medical Research Council (NHMRC), Submission 87, p. 5.

[31]      NHMRC, Submission 87, p. 5 (citations omitted).

[32]      Adjunct Associate Professor Christine Giles, Executive Director, Cancer Australia, Committee Hansard, 29 August 2017, p. 25.

[33]      Mr Harper, CCV, Committee Hansard, 4 August 2017, p. 33.

[34]      Mr Harper, CCV, Committee Hansard, 4 August 2017, p. 34.

[35]      Mr Harper, CCV, Committee Hansard, 4 August 2017, p. 33.

[36]      Mr Harper, CCV, Committee Hansard, 4 August 2017, p. 33.

[37]      Mr Harper, CCV, Committee Hansard, 4 August 2017, p. 33.

[38]      Ms Linda Ferguson, Committee Hansard, 18 May 2017, p. 9.

[39]      Mrs Burgett, Committee Hansard, 6 June 2017, p. 6.

[40]      Mrs Tracy Taylor, Committee Hansard, 6 June 2017, p. 9.

[41]      Ms Simone Leyden, Chief Executive Officer and Co-founder, Unicorn Foundation, Committee Hansard, 7 June 2017, p. 15.

[42]      Ms Nelson, Committee Hansard, 6 June 2017, p. 7.

[43]      NHMRC, Submission 87, p. 6.

[44]      NHMRC, Submission 87, p. 6.

[45]      Dr Melissa Grady, Regional Director, Site Management and Monitoring, Asia Middle East and Africa Clinical Operations, AstraZeneca, Committee Hansard, 8 June 2017, p. 25.

[46]      Professor David Thomas, Director, Garvan Institute, Committee Hansard, 8 June 2017, pp 37–38.

[47]      Mr Denis Strangman AM, Submission 98, p. 14.

[48]      Ovarian Cancer Australia, Submission 242, p. 6.

[49]      See, for example, Mr Harper, CCV, Committee Hansard, 18 May 2017, p. 37; Professor Mark Rosenthal, Chair, Cooperative Trials Group for Neuro‑Oncology, NHMRC Clinical Trials Centre, University of Sydney; Committee Hansard, 18 May 2017, p. 46; Cancer Council Australia (CCA) and the Clinical Oncology Society of Australia (COSA), Submission 137, p. 17.

[50]      CCV, answers to questions on notice, 18 May 2017, (received 18 October 2017), p. 1.

[51]      CCV, answers to questions on notice, 18 May 2017, (received 18 October 2017), pp 1–2.

[52]      CCV, answers to questions on notice, 18 May 2017, (received 18 October 2017), p. 2.

[53]      Victorian Comprehensive Cancer Centre (VCCC), Submission 114, p. 4.

[54]      Associate Professor Gavin Wright, Research and Education Lead, Lung Cancer, VCCC, Committee Hansard, 7 June 2017, p. 41.

[55]      Ms Leyden, Unicorn Foundation, Committee Hansard, 7 June 2017, p. 13.

[56]      ANZCHOG National Patient and Carer Advisory Group, Submission 125, p. 9.

[57]      Mr Dan Kent, Past Chair, Consumer Advisory Panel, Australasian Gastro-Intestinal Trials Group, Committee Hansard, 18 May 2017, p. 53.

[58]      CCV, answers to questions on notice, 18 May 2017, (received 18 October 2017), p. 4.

[59]      Ovarian Cancer Australia, Submission 242, p. 6.

[60]      CCA and COSA, Submission 137, p. 8 (citations omitted).

[61]      CCV, answers to questions on notice, 18 May 2017, (received 18 October 2017), p. 3.

[62]      CCV, answers to questions on notice, 18 May 2017, (received 18 October 2017), p. 4.

[63]      Walter and Eliza Hall Institute, Submission 126, p. 5.

[64]      Mr Richard Vines, Chief Executive Officer, Rare Cancers Australia, Committee Hansard, 18 May 2017, p. 39.

[65]      CCA and COSA, Submission 137, p. 7 (citations omitted).

[66]      Walter and Eliza Hall Institute, Submission 126, p. 5.

[67]      CCA and COSA, Submission 137, p. 7 (citations omitted).

[68]      CCA and COSA, Submission 137, pp 6–7 (citations omitted).

[69]      Walter and Eliza Hall Institute, Submission 126, p. 5.

[70]      Ovarian Cancer Australia, Submission 242, p. 5.

[71]      Professor Walker, Committee Hansard, 6 June 2017, p. 49.

[72]      Dr Chris Fraser, Chair, Australian and New Zealand Children’s Haematology-Oncology Group (ANZCHOG), Committee Hansard, 7 June 2017, p. 19.

[73]      Dr Fraser, ANZCHOG, Committee Hansard, 7 June 2017, p. 25.

[74]      Dr Fraser, ANZCHOG, Committee Hansard, 7 June 2017, p. 25.

[75]      Professor Terrance Johns, Director, Brain Cancer Discovery Collaborative, Committee Hansard, 18 May 2017, p. 22.

[76]      Mr Dustin Perry, Committee Hansard, 7 June 2017, p. 7.

[77]      Mrs Turpie, Committee Hansard, 18 May 2017, p. 2.

[78]      The Hon. Greg Hunt MP, 'Major new measures to help combat rare cancers', Media Release, 24 August 2017, p. 1. This study will be funded through the $79 million of funds available for cancer research, announced in the 2016–2017 Budget.

[79]      ANZCHOG, News - Funding for AIM BRAIN announced, 24 August 2017, http://www.anzchog.org/news/news/2017/08/24/funding-for-aim-brain-announced (accessed 10 October 2017).

[80]      The Hon. Greg Hunt MP, 'Major new measures to help combat rare cancers', Media Release, 24 August 2017, p. 1.

[81]      The Hon. Greg Hunt MP, 'Major new measures to help combat rare cancers', Media Release, 24 August 2017, p. 1.

[82]      The Hon. Greg Hunt MP, 'Australian Brain Cancer Mission', Media Release, 29 October 2017.

[83]      Medicines Australia, answers to questions on notice, 8 June 2017, (received 20 October 2017), p. 4.

[84]      Medicines Australia, answers to questions on notice, 8 June 2017, (received 20 October 2017), p. 3.

[85]      Medicines Australia, answers to questions on notice, 8 June 2017, (received 20 October 2017), p. 3.

[86]      Ms Elizabeth de Somer, Director of Policy and Research, Medicines Australia, Committee Hansard, 8 June 2017, p. 21.

[87]      Medicines Australia, Submission 141, p. 3.

[88]      COSA, Australasian Tele-Trial Model: A National Guide for Implementation, 19 September 2016, https://www.cosa.org.au/media/332325/cosa-teletrial-model-final-19sep16.pdf (accessed 3 November 2017). 

[89]      Mr Peter Orchard, Chief Executive Officer, CanTeen Australia, Committee Hansard, 19 May 2017, p. 7.

[90]      Children's Cancer Research Unit (CCRU), The Children's Hospital at Westmead, Submission 88, p. 3.

[91]      Professor Jennifer Anne Byrne, Head, CCRU, the Children's Hospital at Westmead, Committee Hansard, 19 May 2017, p. 7.

[92]      Children's Hospital Foundation and Australian Centre for Health Services Innovation, Submission 280, p. 2.

[93]      Children's Hospital Foundation and Australian Centre for Health Services Innovation, Submission 280, p. 1.

[94]      Children's Hospital Foundation and Australian Centre for Health Services Innovation, Submission 280, p. 2 (citations omitted).

[95]      Mr Orchard, CanTeen Australia, Committee Hansard, 19 May 2017, p. 7.

[96]      Mrs Carly Gray, Submission 116, p. 3.

[97]      NHMRC, answers to questions on notice, 29 August 2017, (received 19 September 2017), p. 2.

[98]      NHMRC, National Statement on Ethical Conduct in Human Research (2007) - Updated May 2015, 7 June 2017, https://www.nhmrc.gov.au/guidelines-publications/e72, (accessed 10 October 2017).

[99]      NHMRC, Australian Code for the Responsible Conduct of Research, 8 November 2016, https://www.nhmrc.gov.au/guidelines-publications/r39, (accessed 10 October 2017).

[100]    NHMRC, answers to questions on notice, 29 August 2017, (received 19 September 2017), p. 2.

[101]    Medicines Australia, Submission 141, p. 6.

[102]    Namely, implementing 'a combined 30-day best practice benchmark for both ethics and research governance reviews' recommended in 2011 by the Clinical Trials Action Group, and fully implementing the NHMRC 'Good Practice Process' in respect of 'the site assessment and site authorization phases of clinical trials research governance':  Medicines Australia, Submission 141, p. 6.

[103]    Medicines Australia, Submission 141, p. 5.

[104]    Ms de Somer, Medicines Australia, Committee Hansard, 8 June 2017, p. 23.

[105]    NHMRC, answers to questions on notice, 29 August 2017, (received 19 September 2017), p. 6.

[106]    NHMRC, answers to questions on notice, 29 August 2017, (received 19 September 2017), p. 6.

[107]    NHMRC, answers to questions on notice, 29 August 2017, (received 19 September 2017), p. 6.

[108]    CCA and COSA, Submission 137, p. 6.

[109]    CCA and COSA, Submission 137, p. 5.

[110]    Roche Products Pty Limited (Roche), Submission 124, p. 7.

[111]    Roche, Submission 124, p. 7 (citations omitted).

[112]    Roche, Submission 124, p. 7.

[113]    Walter and Eliza Hall Institute, Submission 126, p. 5.

[114]    NHMRC, answers to questions on notice, 29 August 2017, (received 19 September 2017), p. 5.

[115]    NHMRC, answers to questions on notice, 29 August 2017, (received 19 September 2017), p. 6.

[116]    NHMRC, answers to questions on notice, 29 August 2017, (received 19 September 2017), p. 6.

[117]    Mrs Helen Aunedi, Country Head, Country Clinical Operations, Roche, Committee Hansard, 8 June 2017, p. 23.

[118]    Mrs Aunedi, Roche, Committee Hansard, 8 June 2017, p. 23

[119]    Ms Emma Raymond, Theme Leader, Cancer, Wesley Medical Research, Committee Hansard, 6 June 2017, pp 29–30.

[120]    Ms Raymond, Wesley Medical Research, Committee Hansard, 6 June 2017, p. 33.

[121]    Ms Delaine Smith, Chief Executive Officer, ALLG, Committee Hansard, 7 June 2017, p. 30.

[122]    Professor Andrew Roberts, Member and Director, ALLG, Committee Hansard, 7 June 2017, pp 30–31.

[123]    ALLG, Submission 121, p. 2.

[124]    ALLG, Submission 121, p. 5.

[125]    CanTeen Australia, Submission 128, pp 4–5.

[126]    Mr Orchard, CanTeen Australia, Committee Hansard, 19 May 2017, p. 7.

[127]    Professor Anne Kelso, Chief Executive Officer, National Health and Medical Research Council, Committee Hansard, 29 August 2017, p. 30.

Chapter 4 - Paediatric and youth cancers

[1]        Cancer Australia, About children's cancer, https://childrenscancer.canceraustralia.gov.au/about-childrens-cancer/what-childrens-cancer (accessed 4 October 2017).

[2]        Mr Peter Orchard, Chief Executive Officer, CanTeen Australia, Committee Hansard, 19 May 2017, p. 3.

[3]        Cancer Australia, About children's cancer, https://childrenscancer.canceraustralia.gov.au/about-childrens-cancer/what-childrens-cancer (accessed 4 October 2017).

[4]        Mr Simon Gray, Committee Hansard, 7 June 2017, p. 4.

[5]        Mrs Tracy Taylor, Submission 52, p. 1.

[6]        Ms Elizabeth Perry, Submission 78, p. 1.

[7]        Mr Jonathan Karl Fretwell, Submission 99, p. 3.

[8]        Mrs Sarah McGoram, Submission 159, p. 1.

[9]        Ms Robin Berthelsen, Submission 170, p. 1.

[10]      Love for Lachie, Submission 120, p. 7.

[11]      Cancer Australia, Types of children's cancers, 23 August 2015, https://childrenscancer.canceraustralia.gov.au/types-childrens-cancers (accessed 4 October 2017).

[12]      See for example, Brain Cancer Discovery Collaborative, Submission 60, p. 1; Love for Lachie, Submission 120, p. 1; Children's Hospital Foundation, Submission 274, p. 2.

[13]      Children’s Cancer Research Unit (CCRU), Submission 88, p. 4.

[14]      Australian and New Zealand Children’s Haematology-Oncology Group (ANZCHOG), Submission 237, p. 2.

[15]      CanTeen Australia, Submission 128, p. 3 (citations omitted).

[16]      CanTeen Australia, Submission 128, p. 2 (citations omitted).

[17]      The Kids' Cancer Project, Submission 136, p. 3.

[18]      The Kids' Cancer Project, Submission 136, p. 5.

[19]      The Kids' Cancer Project, Submission 136, p. 2.

[20]      The Kids' Cancer Project, Submission 136, p. 3.

[21]      CCRU, Submission 88, p. 2.

[22]      The Kids' Cancer Project, Submission 136, p 3. See also ANZCHOG National Patient and Carer Advisory Group, Submission 125, p. 6.

[23]      Dr Chris Fraser, Chair, ANZCHOG, Committee Hansard, 7 June 2017, p. 19.

[24]      ANZCHOG, Submission 237, pp 4–5.

[25]      CanTeen Australia, Submission 128, pp 2–3 (citations omitted).

[26]      Mr Orchard, CanTeen Australia, Committee Hansard, 19 May 2017, p. 3.

[27]      Dr Fraser, ANZCHOG, Committee Hansard, 7 June 2017, p. 22.  

[28]      Dr Fraser, ANZCHOG, Committee Hansard, 7 June 2017, p. 23.  

[29]      Mr Orchard, CanTeen Australia, Committee Hansard, 19 May 2017, p. 3.

[30]      Professor David Walker, Committee Hansard, 6 June 2107, p. 50.

[31]      Clinical Associate Professor Nicholas Gottardo, Deputy Chair, ANZCHOG; and Chair, Central Nervous System Tumour Subcommittee, ANZCHOG, Committee Hansard, 7 June 2017, p. 23.

[32]      Clinical Associate Professor Gottardo, ANZCHOG, Committee Hansard, 7 June 2017, p. 23.

[33]      Clinical Associate Professor Gottardo, ANZCHOG, Committee Hansard, 7 June 2017, p. 23.

[34]      Mr Robert Perkins, Submission 184, p. 1.

Chapter 5 - Increasing survival rates for people with low survival rate cancers

[1]        See, for example, Ms Simone Leyden, Chief Executive Officer and Co-founder, Unicorn Foundation, Committee Hansard, 7 June 2017, p. 12;  Mr Daniel Goulburn, Member, Pancreatic Cancer Alliance (PCA), Committee Hansard, 7 June 2017, p. 49.

[2]        See, for example, Ms Belinda Peden, Submission 143, p. 5; Mrs Lyndall Bates, Submission 180; Ms Frances Burrows, Submission 265, p. 2.

[3]        Professor Guy Eslick, Professor of Cancer Epidemiology and Medical Statistics, University of Sydney, Committee Hansard, 18 May 2017, p. 56.

[4]        Professor Eslick, University of Sydney, Committee Hansard, 18 May 2017, p. 56.

[5]        Professor Eslick, University of Sydney, Committee Hansard, 18 May 2017, p. 56.

[6]        Dr Nicola Waddell, Group Leader, Medical Genomics Group, QIMR Berghofer Medical Research Institute (QIMR Berghofer), Committee Hansard, 6 June 2017, p. 38.

[7]        Mr Richard Vines, Chief Executive Officer, Rare Cancers Australia (RCA), Committee Hansard, 18 May 2017, p. 41.

[8]        Mr Vines, RCA, Committee Hansard, 18 May 2017, p. 41.

[9]        Mr Goulburn, PCA, Committee Hansard, 7 June 2017, p. 49.

[10]      Mr Goulburn, PCA, Committee Hansard, 7 June 2017, p. 49.

[11]      Mrs Margaret Shonk, Mr Evan Shonk and Ms Linda Ferguson, Committee Hansard, 18 May 2017, p. 9. 

[12]      Professor Terrance Johns, Director, Brain Cancer Discovery Collaborative, Committee Hansard, 18 May 2017, p. 20. 

[13]      Professor Phyllis Butow, President, Clinical Oncology Society of Australia (COSA), Committee Hansard, 18 May 2017, p. 30. 

[14]      Professor Butow, COSA, Committee Hansard, 18 May 2017, p. 30. 

[15]      Dr Alison Butt, Senior Scientific Officer, Cancer Australia, Committee Hansard, 29 August 2017, p. 22 (corrected in correspondence dated 29 August 2017).

[16]      Dr Butt, Cancer Australia, Committee Hansard, 29 August 2017, p. 22.

[17]      Adjunct Associate Professor Christine Giles, Executive Director, Cancer Australia, Committee Hansard, 29 August 2017, p. 23.

[18]      Dr David Jenkinson, Chief Scientific Officer, The Brain Tumour Charity (TBTC), Committee Hansard, 29 August 2017, p. 34. 

[19]      TBTC, Home, https://www.thebraintumourcharity.org/ (accessed 19 October 2017).

[20]      Dr David Jenkinson, Chief Scientific Officer, TBTC, Committee Hansard, 29 August 2017, p. 37.

[21]      Dr Jenkinson, TBTC, Committee Hansard, 29 August 2017, pp 36–37.

[22]      Dr Jenkinson, TBTC, Committee Hansard, 29 August 2017, p. 37.

[23]      Royal Australian College of General Practitioners (RACGP), Education and professional development, https://www.racgp.org.au/education/ (accessed 6 November 2017).

[24]      RACGP, Planning learning and need (PLAN), https://www.racgp.org.au/education/qicpd-program/gps/planning-learning-and-need-(plan)/ (accessed 6 November 2017). 

[25]      Dr Lynelle Moon, Group Head, Health Group, Australian Institute of Health and Welfare (AIHW), Committee Hansard, 8 June 2017, p. 14.

[26]      Dr Moon, AIHW, Committee Hansard, 8 June 2017, p. 14.

[27]      Dr Moon, AIHW, Committee Hansard, 8 June 2017, p. 16. For information about the requests for data AIHW received from 1 April 2016 to 31 March 2017, see: AIHW, answers to questions on notice, 8 June 2017 and 14 June 2017, (received 3 July 2017), pp 9–10.

[28]      AIHW, answers to questions on notice, 8 June 2017 and 14 June 2017, (received 3 July 2017), p. 2.

[29]      Mrs Tricia Berman, Secretary, Brain Tumour Alliance Australia (BTAA), Committee Hansard, 8 June 2017, p. 40.

[30]      Mr Philip Steel, Vice-Chair, BTAA, Committee Hansard, 8 June 2017, p. 40.

[31]      CSIRO, Submission 204, p. 10.

[32]      CSIRO, Submission 204, p. 10.

[33]      CSIRO, Submission 204, p. 10.

[34]      Professor Eslick, University of Sydney, Committee Hansard, 18 May 2017, p. 59.

[35]      Cancer Council Australia (CCA) and the Clinical Oncology Society of Australia (COSA), Submission 137, p. 18.

[36]      Mr Todd Harper, Chief Executive Officer, Cancer Council Victoria (CCV), Committee Hansard, 18 May 2017, p. 36.

[37]      Mr Harper, CCV, Committee Hansard, 18 May 2017, p. 36.

[38]      CCA and COSA, Submission 137, p. 18.

[39]      Brain Cancer Biobanking Australia, Submission 119, p. 1. 

[40]      Brain Cancer Biobanking Australia, Submission 119, p. 1. 

[41]      Dr Jens Bunt, Research Fellow and Team Leader, NFI Research Lines, Brain Development and Disorders Laboratory and Professor Linda Richards, Deputy Director, Research, Queensland Brain Institute (QBI), The University of Queensland (UQ), Committee Hansard, 6 June 2017, pp 16–17. 

[42]      Professor Richards, QBI, UQ, Committee Hansard, 6 June 2017, p. 19.

[43]      QBI, Submission 133, p. 1.

[44]      Cure Brain Cancer Foundation (CBCF), Submission 139, p. 11.

[45]      Dr Bryan Day, Team Head, Translational Brain Cancer Research Laboratory, QIMR Berghofer and Professor David Walker, private capacity, Committee Hansard, 6 June 2017, pp 44 and 47, respectively. 

[46]      Dr Bunt, QBI, UQ, Committee Hansard, 6 June 2017, p. 17.

[47]      Professor Michael Buckland, private capacity, Committee Hansard, 18 May 2017, p. 57. 

[48]      Professor Manuel Graeber, Barnet-Cropper Chair of Brain Tumour Research, Brain and Mind Centre, University of Sydney, Committee Hansard, 18 May 2017, p. 62.

[49]      Professor Richards, QBI, Committee Hansard, 6 June 2017, p. 17. 

[50]      Dr Waddell, QIMR Berghofer, Committee Hansard, 6 June 2017, p. 44.

[51]      Ms Emma Raymond, Theme Leader, Cancer, Wesley Medical Research, Committee Hansard, 6 June 2017, p. 31. 

[52]      CCA and COSA, Submission 137, p. 18.

[53]      Dr Bunt, QBI, UQ, Committee Hansard, 6 June 2017, p. 18.

[54]      Professor Richards, QBI and UQ, Committee Hansard, 6 June 2017, p. 18.

[55]      Ms Raymond, Wesley Medical Research, Committee Hansard, 6 June 2017, pp 31-32. 

[56]      Ms Raymond, Wesley Medical Research, Committee Hansard, 6 June 2017, p. 34.

[57]      Professor Richards, QBI and UQ, Committee Hansard, 6 June 2017, p. 18.

[58]      Professor Richards, QBI and UQ, Committee Hansard, 6 June 2017, p. 19. 

[59]      Australian government, Australian Government response to the Senate Community Affairs References Committee Report: Availability of new, innovative and specialist cancer drugs in Australia, November 2017, p. 13.

[60]      Australian government, Australian Government response to the Senate Community Affairs References Committee Report: Availability of new, innovative and specialist cancer drugs in Australia, November 2017, p. 13.

[61]      Australian Government, 2016 National Research Infrastructure Roadmap, February 2017, https://docs.education.gov.au/system/files/doc/other/ed16-0269_national_research_infrastructure_roadmap_report_internals_acc.pdf (accessed 7 November 2017), p. 72. 

[62]      Australian Government, 2016 National Research Infrastructure Roadmap, February 2017, p. 71.

[63]      Australian Genomics Health Alliance, About genomics, https://www.australiangenomics.org.au/for-participants/about-genomics/ (accessed 7 November 2017). 

[64]      National Cancer Institute, NCI Dictionary of Cancer Terms: biomarker, https://www.cancer.gov/publications/dictionaries/cancer-terms?cdrid=45618 (accessed 7 November 2017). 

[65]      Garvan Institute of Medical Research/ The Kinghorn Cancer Centre/ The Garvan Research Foundation (Garvan Institute), Submission 34, p. 1.

[66]      Ms Jane Hill, Chief Executive Officer, Ovarian Cancer Australia, Committee Hansard, 4 August 2017, p. 2.

[67]      The Garvan Institute defines rare and less common cancers as those 'affecting up to 12 in 100,000 people', which 'account for 23.7% of cancers diagnosed, and 38.5% of cancer deaths': Garvan Institute, Submission 34, p. 2.

[68]      Garvan Institute, Submission 34, p. 1.

[69]      Garvan Institute, Submission 34, pp 5–6.

[70]      Garvan Institute, Submission 34, p. 6.

[71]      Professor David Thomas, Director, The Kinghorn Cancer Centre; Head, Cancer Research Division, Garvan Institute, Committee Hansard, 8 June 2017, p. 31.

[72]      Dr Elizabeth Johnson, Program Manager, Victorian Comprehensive Cancer Centre (VCCC), Committee Hansard, 7 June 2017, p. 40.

[73]      Dr Johnson, VCCC, Committee Hansard, 7 June 2017, p. 41.

[74]      National Health and Medical Research Council (NHMRC), Submission 87, p. 4.

[75]      Cancer Australia, Submission 129, p. 7.

[76]      Cancer Australia, Submission 129, p. 7.

[77]      Professor Stephen Fox, Director of Pathology, Peter MacCallum Cancer Centre, Committee Hansard, 4 August 2017, p. 32.

[78]      Professor Fox, Peter MacCallum Cancer Centre, Committee Hansard, 4 August 2017, p. 49.

[79]      Professor Fox, Peter MacCallum Cancer Centre, Committee Hansard, 4 August 2017, p. 49.

[80]      CCA and COSA, Submission 137, p. 18 (emphasis in original).

[81]      Roche, Submission 124, p. 6.

[82]      CBCF, Submission 139, p. 11.

[83]      NSW Oncology Group (NSWOG) Neuro-oncology, Submission 123, p. 4.

[84]      Ms Linda Ferguson, Committee Hansard, 18 May 2017, p. 2.

[85]      CBCF, Submission 139, p. 11.

[86]      Bristol-Meyers Squibb (BMS), Submission 289, p. 3.

[87]      BMS, Submission 289, p. 3.

[88]      Professor Andrew Wilson, Chair, Pharmaceutical Benefits Advisory Committee (PBAC), Committee Hansard, 29 August 2017, p.18.

[89]      Professor Wilson, PBAC, Committee Hansard, 29 August 2017, p.18.

[90]      Cancer Australia, Immunotherapy, https://canceraustralia.gov.au/affected-cancer/treatment/immunotherapy (accessed 7 November 2017). 

[91]      NHMRC, Personalised medicine and genetics, November 2013, https://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/g004_personalised_medicine_genetics_150622.pdf (accessed 7 November 2017), p. 1. 

[92]      Ms Susan Pitt, Committee Hansard, 8 June 217, p. 4. 

[93]      Professor Buckland, private capacity, Committee Hansard, 18 May 2017, p. 63. 

[94]      Ms Michelle Stewart, Head of Research Strategy, CBCF, Committee Hansard, 6 June 2017, p. 27. 

[95]      Ms Zoe Armstrong, Clinical Research Director, Merck Sharp & Dohme Australia (MSD), Committee Hansard, 6 June 2017, p. 53. 

[96]      Ms Armstrong, MSD, Committee Hansard, 6 June 2017, pp. 52-55.

[97]      Ms Stewart, CBCF, Committee Hansard, 6 June 2017, p. 25. 

[98]      Deloitte Access Economics (Deloitte), The New Wave of Immunotherapy Cancer Medicines –The Untapped Potential for Australians, October 2017, p. 60.

[99]      Deloitte, The New Wave of Immunotherapy Cancer Medicines –The Untapped Potential for Australians, October 2017, p. 60.

[100]    Deloitte, The New Wave of Immunotherapy Cancer Medicines –The Untapped Potential for Australians, October 2017, p. 61.

[101]    Medicines Australia, Submission 141, p. 12.

[102]    Thoracic Society of Australia and New Zealand, Submission 103, p. 5 (citations omitted).

[103]    See, for example, Professor Richards, QBI, UQ, Committee Hansard, 6 June 2017, p. 20; RCA, Submission 50, p. 12.

[104]    Mr Vines, RCA, Committee Hansard, 18 May 2017, p. 38.

[105]    Professor Johns, BCDC, Committee Hansard, 18 May 2017, p. 24. 

[106]    Professor Johns, BCDC, Committee Hansard, 18 May 2017, p. 21. 

[107]    Mr Vines, RCA, Committee Hansard, 18 May 2017, p. 39.

[108]    Dr Jenkinson, TBTC, Committee Hansard, 29 August 2017, p. 39.

[109]    Dr Bunt, QBI, UQ, Committee Hansard, 6 June 2017, p. 20.

[110]    Ms Ferguson, Committee Hansard, 18 May 2017, p. 8.

[111]    Mr Vines, RCA, Committee Hansard, 18 May 2017, p. 38. 

[112]    Ms Marilyn Nelson, Committee Hansard, 6 June 2017, p. 10.

[113]    Ms Evangeline Lim, Committee Hansard, 6 June 2017, p. 3. 

[114]    Mrs Lim, Committee Hansard, 6 June 2017, p. 6. 

[115]    Mr Vines, RCA, Committee Hansard, 18 May 2017, p. 38. 

[116]    Mr Vines, RCA, Committee Hansard, 18 May 2017, p. 40.

[117]    As illustrated in Figure 4, PBAC determines whether drugs should be listed on the Pharmaceutical Benefits Scheme, and Medical Services Advisory Committee which services, devices, consultations or allied services should be listed on the Medicare Benefits Scheme.

[118]    Mr Carmel Spiteri, Team Leader, Market Access, MSD, Committee Hansard, 6 June 2017, p. 53.

[119]    Professor Fox, Peter MacCallum Cancer Centre, Committee Hansard, 4 August 2017, p. 27.

[120]    Professor Fox, Peter MacCallum Cancer Centre, Committee Hansard, 4 August 2017, p. 27.

[121]    MSD, Submission 115, p. 3.

[122]    MSD, Submission 115, p. 3.

[123]    MSD, Submission 115, p. 3 (citations omitted).

[124]    Medicines Australia, Submission 141, p. 13.

[125]    Professor Wilson, PBAC, Committee Hansard, 29 August 2017, p.10.

[126]    Professor Wilson, PBAC, Committee Hansard, 29 August 2017, p.12.

[127]    Professor Wilson, PBAC, Committee Hansard, 29 August 2017, p.17.

[128]    Mrs Sandra Woods, Committee Hansard, 18 May 2017, p. 13. 

[129]    See, for example, QIMR Berghofer, Submission 80, p. 7; Australia and New Zealand Melanoma Trials Group, Submission 167, p. 3;  Mrs Karyn Harris, Submission 185, p. 2

[130]    QIMR Berghofer, Submission 80, p. 7.

[131]    Mr Tim Eliot, Submission 43, pp 3–4. 

[132]    Mrs Suzanne Turpie, Committee Hansard, 18 May 2017, p. 12.

[133]    Ms Dianne Dunn, Submission 189, p. 1.

[134]    Ms Dunn, Submission 189, p. 2.

[135]    Ms Ruth Churchill, Submission 76, p. 1.

[136]    Ms Hill, Ovarian Cancer Australia, Committee Hansard, 4 August 2017, p. 2.

[137]    See, for example, Mrs Lyndal Lean, Submission 77, p. 2; Mrs Kathy Farrell, Submission 154, p. 1; Mrs Harris, Submission 185, p. 2.

[138]    See, for example, Mark Hughes Foundation, Submission 113, p. 2; NSWOG Neuro-oncology, Submission 123, p. 5; Professor Walker, Submission 269, p. 5.

[139]    Mr Evan Shonk, Committee Hansard, 18 May 2017, p. 12.

[140]    Lung Foundation Australia (LFA), Submission 89, Appendix: Improving outcomes for Australians with lung cancer. A Call to Action, 2016, p. 10.

[141]    Mr Khang Chiem, Submission 110, p. 1–2.

[142]    LFA, Submission 89, p. 1.

[143]    LFA, Submission 89, Appendix: Improving outcomes for Australians with lung cancer. A Call to Action, 2016, p. 10.

[144]    Mrs Sandra Woods, Submission 7, p. 4.

[145]    Centre for Community-Driven Research (CCDR), Submission 49, p. 1.

[146]    CCDR, Submission 49, p. 1.

[147]    Ms Michelle Bradley, Submission 108, p. 5.

[148]    BTAA, Submission 127, p. 14.

[149]    BTAA, Submission 127, p. 15.

[150]    Dr Jonathon Parkinson, Chair, NSWOG Neuro-oncology, Committee Hansard, 19 May 2017, p. 14. 

[151]    Ms Alice Creelman, Assistant Secretary, Department of Health (DoH), Committee Hansard, 29 August 2017, pp 14–15.

[152]    Ms Creelman, DoH, Committee Hansard, 29 August 2017, p. 15.

[153]    Ms Creelman, DoH, Committee Hansard, 29 August 2017, p. 15.

[154]    Dr Jenkinson, TBTC, Committee Hansard, 29 August 2017, p. 38.

[155]    Dr Jenkinson, TBTC, Committee Hansard, 29 August 2017, p. 38.

[156]    Ms Leanne Reynolds, Head of Research, Pancreatic Cancer UK, Committee Hansard, 29 August 2017, p. 38.

[157]    Dr Parkinson, NSW Oncology Group – Neuro-oncology, Committee Hansard, 19 May 2017, p. 18. 

[158]    Mrs Margaret Shonk, Committee Hansard, 18 May 2017, p. 8.

[159]    Mrs Turpie, Committee Hansard, 18 May 2017, p. 8. 

[160]    Mrs Turpie, Committee Hansard, 18 May 2017, p. 13.

[161]    Mrs Tracey Taylor, Committee Hansard, 6 June 2017, p. 8.

[162]    Mr Phil Reynolds, Submission 240, p. 2.

[163]    Sydney Neuro-Oncology Group, Submission 130, p. 3.

[164]    Dr Rachel Harris, Submission 229, p. 3.

[165]    Department of Social Services (DSS), Fast-Tracking Disability Support Pension Claims for People With Profound Disability Or Terminal Illness, 7 November 2014, https://www.dss.gov.au/our-responsibilities/disability-and-carers/benefits-payments/disability-support-pension-dsp-better-and-fairer-assessments/fast-tracking-disability-support-pension-claims-for-people-with-profound-disability-or-terminal-illness (accessed 23 October 2017).

[166]    DSS, Fast-Tracking Disability Support Pension Claims for People With Profound Disability Or Terminal Illness, 7 November 2014.

[167]    DSS, Fast-Tracking Disability Support Pension Claims for People With Profound Disability Or Terminal Illness, 7 November 2014.

[168]    National Cancer Expert Reference Group (NCERG), COAG Improving Cancer Care Initiative National Cancer Work Plan, July 2012, p. 1.

[169]    NCERG, COAG Improving Cancer Care Initiative National Cancer Work Plan, July 2012, p. 1.

[170]    NCERG, COAG Improving Cancer Care Initiative National Cancer Work Plan, July 2012, p. 1.

[171]    NCERG, COAG Improving Cancer Care Initiative National Cancer Work Plan, July 2012, p. 2.

[172]    NCERG, COAG Improving Cancer Care Initiative National Cancer Work Plan, July 2012, p. 2.

[173]    NCERG, COAG Improving Cancer Care Initiative National Cancer Work Plan, July 2012, p. 2.

[174]    NCERG, COAG Improving Cancer Care Initiative National Cancer Work Plan, July 2012, p. 1.

[175]    Cancer Australia, Grants and funding, https://canceraustralia.gov.au/research-data/grants-and-funding (accessed 16 October 2017).

[176]    Adjunct Associate Professor Christine Giles, Executive Director, Cancer Australia, Committee Hansard, 29 August 2017, p. 23.

[177]    NCERG, COAG National Cancer Work Plan Progress Report 2014-15 and 2015-16, p. 11.

[178]    Australasian Gastro-Intestinal Trials Group, Submission 85, p. 4.

[179]    The Hon. Greg Hunt MP, 'Australian Brain Cancer Mission', Media Release, 29 October 2017, p. 1.

[180]    The Hon. Greg Hunt MP, 'Australian Brain Cancer Mission', Media Release, 29 October 2017, p. 1.

[181]    The Hon. Greg Hunt MP, 'Australian Brain Cancer Mission', Media Release, 29 October 2017, p. 2.

[182]    The Hon. Greg Hunt MP, ' Australian Brain Cancer Mission', Media Release, 29 October 2017, p. 1.

[183]    The Hon. Greg Hunt MP, 'Australian Brain Cancer Mission', Media Release, 29 October 2017, p. 1.

[184]    The Hon. Greg Hunt MP, 'Australian Brain Cancer Mission', Media Release, 29 October 2017, p. 1.

[185]    The Hon. Greg Hunt MP, 'Australian Brain Cancer Mission', Media Release, 29 October 2017, p. 1.

[186]    The Hon. Greg Hunt MP, 'Australian Brain Cancer Mission', Media Release, 29 October 2017, p. 2.

[187]    See, for example, Pancare Foundation, Submission 9, p. 2; CanTeen Australia, Submission 128, p. 6; Ovarian Cancer Australia, Submission 242, p. 4.

[188]    Congress.gov, H.R.733 - Recalcitrant Cancer Research Act of 2012, https://www.congress.gov/bill/112th-congress/house-bill/733 (accessed 26 October 2017).

[189]    Congress.gov, H.R.733 - Recalcitrant Cancer Research Act of 2012, https://www.congress.gov/bill/112th-congress/house-bill/733 (accessed 26 October 2017).

[190]    See, Lung Cancer Alliance, Recalcitrant Cancer Research Act, http://www.lungcanceralliance.org/lung-cancer-advocacy/impact-to-date/lung-cancer-mortality-reduction-act/ (accessed 26 October 2017); and Pancreatic Cancer Action Network, Recalcitrant Cancer Research Act, https://www.pancan.org/get-involved/advocacy/recalcitrant-cancer-research-act/ (accessed 26 October 2017).

[191]    Barbara O'Brien, 'The MCA Blog: The Effect of the Recalcitrant Cancer Act on Cancer Research', 5 December 2014, Mesothelioma.com, https://www.mesothelioma.com/blog/authors/barbara/the-effect-of-the-recalcitrant-cancer-act-on-cancer-research.htm (accessed 26 October 2017).

[192]    CanTeen Australia, answers to questions on notice, 19 May 2017, (received 9 June 2017), p. 5.

[193]    Mr Barry David Westhorpe, Chief Executive Officer, Pancare Foundation Inc., Committee Hansard, 7 June 2017, p. 50.

[194]    Mr Westhorpe, Pancare Foundation Inc., Committee Hansard, 7 June 2017, p. 53.

[195]    Dr Jenkinson, TBTC, Committee Hansard, 29 August 2017, p. 40.

[196]    Dr Jenkinson, TBTC, Committee Hansard, 29 August 2017, p. 40.

[197]    Low Survival Cancers Alliance, Submission 90, p. 4.

[198]    Research Australia, Submission 122, p. 20.

[199]    Pancare Foundation, Submission 9, p. 1.

[200]    Pancare Foundation, Submission 9, p. 1.

[201]    Mr Chiem, Submission 110, p. 3 (citations omitted).

[202]    Mr Barrie Littlefield, Head of Engagement, CBCF, Committee Hansard, 6 June 2017, p. 22.

[203]    Ms Christine Christensen, Chair, Cancer Voices South Australia, and Executive Member, Cancer Voices Australia (CVA), Committee Hansard, 18 May 2017, p. 16.

[204]    CVA, Submission 61, pp 2–3.

[205]    CanTeen Australia, answers to questions on notice, 19 May 2017, (received 9 June 2017), p. 5.

[206]    CanTeen Australia, answers to questions on notice, 19 May 2017, (received 9 June 2017), p. 5.

[207]    CanTeen Australia, answers to questions on notice, 19 May 2017, (received 9 June 2017), p. 5.