Skip to main content
SpringerLink
Log in

Identifying stakeholder opinion regarding access to “high-cost medicines”: A systematic review of the literature

  • Review Article
  • Published:
Central European Journal of Medicine

Abstract

Objective: To identify the viewpoints and perceptions of different stakeholders regarding high cost medicines (HCMs). Methods: A systematic review of the literature was performed to identify original research articles. Using predefined categories, data related to the viewpoints of different stakeholders was systematically extracted and analyzed. Results: Thirty seven original research articles matched the criteria. The main stakeholders identified include physicians, patients, public and health funding authorities. The influence of media and other economic and ethical issues were also identified in the literature. A large number of stakeholders were concerned about lack of access to HCMs. Physicians have difficulty balancing the the rational use of expensive drugs while at the same time acting as “patients’ advocate”. Patients would like to know about all treatment options, even if they may not be able to afford them. The process and criteria for reimbursement should be transparent and access has to be equitable across patient groups. Conclusion: Access to HCMs could be improved through transparency and involvement of all stakeholders, especially patients and the public. Moral issues and the “rule of rescue” could influence decision-making process significantly. At system level, objectivity is important to ensure that the system is equitable and transparent.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Simon F. Market Access For Biopharmaceuticals: New Challenges. Health Aff. 2006; 25(5): 1363–1370

    Article  Google Scholar 

  2. Cohen J, Looney W. What is the value of oncology medicines? Nat Biotech. 2010; 28(11): 1160–1163

    Article  CAS  Google Scholar 

  3. Fojo T, Grady C. How Much Is Life Worth: Cetuximab, Non-Small Cell Lung Cancer, and the $440 Billion Question. Journal of the National Cancer Institute. 2009; 101(15): 1044–1048

    Article  PubMed Central  PubMed  Google Scholar 

  4. Puska P. Intervention and experimental studies. Oxford textbook of public health. 1991: 177–187

    Google Scholar 

  5. Garattini L, Cornago D, De Compadri P. Pricing and reimbursement of in-patent drugs in seven European countries: a comparative analysis. Health Policy. 2007; 82(3): 330–9.

    Article  PubMed  Google Scholar 

  6. Lu CY, Macneill P, Williams K, Day R. Access to high cost medicines in Australia: ethical perspectives. Aust New Zealand Health Policy. 2008; 5: 4.

    Article  PubMed Central  PubMed  Google Scholar 

  7. Mayor S. Time to raise the bar for cancer drug approval? The Lancet Oncology. 2010; 11(1): 16–17

    Article  Google Scholar 

  8. Strech D, Synofzik M, Marckmann G. Systematic reviews of empirical bioethics. Journal of Medical Ethics. 2008; 34(6): 472–477

    Article  CAS  PubMed  Google Scholar 

  9. Liberati A, Altman DG, Tetzlaff J, Mulrow C, Gotzsche PC, Ioannidis JP, et al. The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate healthcare interventions: explanation and elaboration. BMJ. 2009; 339: b2700

    Article  PubMed Central  PubMed  Google Scholar 

  10. Mays N, Pope C. Qualitative research in health care. Assessing quality in qualitative research. BMJ. 2000; 320(7226): 50–52

    CAS  Google Scholar 

  11. Hedin A. Knowledge-based public health work Part 2. National Institute of Public health. 2004

    Google Scholar 

  12. Lu CY, Ritchie J, Williams K, Day R. The views of stakeholders on controlled access schemes for high-cost antirheumatic biological medicines in Australia. Australia & New Zealand Health Policy. 2007; 4: 26

    Article  Google Scholar 

  13. Popay J, Arai L, Petticrew M, Roen K. Narrative Synthesis in Systematic Reviews. 2006

    Google Scholar 

  14. Berry SR, Bell CM, Ubel PA, Evans WK, Nadler E, Strevel EL, et al. Continental Divide? The attitudes of US and Canadian oncologists on the costs, cost-effectiveness, and health policies associated with new cancer drugs. J Clin Oncol. 2010; 28(27): 4149–4153

    Article  PubMed  Google Scholar 

  15. Berry SR, Hubay S, Soibelman H, Martin DK. The effect of priority setting decisions for new cancer drugs on medical oncologists’ practice in Ontario: a qualitative study. BMC Health Serv Res. 2007; 7:193

    Article  PubMed Central  PubMed  Google Scholar 

  16. Blendon RJ, Benson JM, Botta MD, Zeldow D, Kim MK. A four-country survey of public attitudes towards restricting healthcare costs by limiting the use of high-cost medical interventions. BMJ Open. 2012; 2(3)

    Google Scholar 

  17. Bullock AJ, Hofstatter EW, Yushak ML, Buss MK. Understanding patients’ attitudes toward communication about the cost of cancer care. Journal of oncology practice / American Society of Clinical Oncology. 2012; 8(4): e50–58

    Article  PubMed Central  PubMed  Google Scholar 

  18. Chan KK, Wong B, Siu LL, Straus SE, Chang J, Berry SR. Less than ideal: how oncologists practice with limited drug access. Journal of oncology practice / American Society of Clinical Oncology. 2012; 8(3): 190–195

    Article  PubMed Central  PubMed  Google Scholar 

  19. Chao LW PJ, Soldo BJ. End-of-life medical treatment choices: do survival chances and out-of-pocket costs matter? Med Decis Making. 2008; 28(4): 511–523

    Article  PubMed Central  PubMed  Google Scholar 

  20. Dare T, Findlay M, Browett P, Amies K, Anderson S. Paternalism in practice: informing patients about expensive unsubsidised drugs. J Med Ethics. 2010; 36(5): 260–264

    Article  PubMed  Google Scholar 

  21. de Kort SJ, Kenny N, van Dijk P, Gevers S, Richel DJ, Willems DL. Cost issues in new diseasemodifying treatments for advanced cancer: Indepth interviews with physicians. European Journal of Cancer. 2007; 43(13): 1983–1989

    Article  PubMed  Google Scholar 

  22. Desser AS, Gyrd-Hansen D, Olsen JA, Grepperud S, Kristiansen IS. Societal views on orphan drugs: cross sectional survey of Norwegians aged 40 to 67. BMJ. 2010; 341: c4715

    Article  PubMed Central  PubMed  Google Scholar 

  23. Gallego G, Taylor SJ, Brien JA. Setting priorities for high-cost medications in public hospitals in Australia: should the public be involved? Australian health review: a publication of the Australian Hospital Association. 2011; 35(2): 191–196

    Article  Google Scholar 

  24. Gallego G, Taylor SJ, Brien J-aE. Priority setting for high cost medications (HCMs) in public hospitals in Australia: A case study. Health Policy. 2007; 84(1): 58–66

    Article  PubMed  Google Scholar 

  25. Gallego G, Taylor SJ, Brien J-aE. Funding and access to high cost medicines in public hospitals in Australia: Decision-makers’ perspectives. Health Policy. 2009; 92(1): 27–34

    Article  PubMed  Google Scholar 

  26. Goldman DP, Jena AB, Lakdawalla DN, Malin JL, Malkin JD, Sun E. The value of specialty oncology drugs. Health Serv Res 2010 Feb;45(1):115–132 Epub 2009 Oct 29. 2009

    Article  PubMed Central  PubMed  Google Scholar 

  27. Hind D, Wailoo AJ, Sutcliffe P. Demands for’ offlicence’ access to trastuzumab (Herceptin): content analysis of UK newspaper articles. Health Expect. 2010

    Google Scholar 

  28. Huttin C, Andral J. How the reimbursement system may influence physicians’ decisions results from focus groups interviews in France. Health Policy. 2000; 54(2): 67–86

    Article  CAS  PubMed  Google Scholar 

  29. Kaser E, Shaw J, Marven M, Swinburne L, Boyle F. Communication about high-cost drugs in oncology-the patient view. Ann Oncol 2010 Sep;21(9):1910–1914 Epub 2010 Mar 23. 2010

    Article  CAS  PubMed  Google Scholar 

  30. Kozminski MA, Neumann PJ, Nadler ES, Jankovic A, Ubel PA. How long and how well: oncologists’ attitudes toward the relative value of life-prolonging v. quality of life-enhancing treatments. Med Decis Making. 2011; 31(3): 380–385

    Article  Google Scholar 

  31. Leighl NB, Tsao WS, Zawisza DL, Nematollahi M, Shepherd FA. A willingness-to-pay study of oral epidermal growth factor tyrosine kinase inhibitors in advanced non-small cell lung cancer. Lung Cancer. 2006; 51(1): 115–121

    Article  PubMed  Google Scholar 

  32. Lu CY, Ritchie J, Williams KM, Day RO. Recent developments in targeting access to high cost medicines in Australia. Aust New Zealand Health Policy. 2005; 2: 28

    Article  PubMed Central  PubMed  Google Scholar 

  33. Mackenzie R, Chapman S, Salkeld G, Holding S. Media influence on Herceptin subsidization in Australia: application of the rule of rescue? J R Soc Med. 2008; 101(6): 305–312

    Article  PubMed Central  PubMed  Google Scholar 

  34. Martin D, Abelson J, Singer P. Participation in health care priority-setting through the eyes of the participants. J Health Serv Res Policy. 2002; 7(4): 222–229

    Article  PubMed  Google Scholar 

  35. Mehta AB, Low E. Access to expensive drugs in the NHS: myths and realities for cancer patients. Int J Clin Pract. 2007; 61(12): 2126–2129

    Article  CAS  PubMed  Google Scholar 

  36. Menon D, Stafinski T, Stuart G. Access to drugs for cancer: Does where you live matter? Can J Public Health. 2005; 96(6): 454–458.

    PubMed  Google Scholar 

  37. Mileshkin L, Schofield PE, Jefford M, Agalianos E, Levine M, Herschtal A, et al. To tell or not to tell: the community wants to know about expensive anticancer drugs as a potential treatment option. Journal of Clinical Oncology. 2009; 27(34): 5830–5837

    Article  PubMed  Google Scholar 

  38. Morgan S, Cunningham CM. Listening for prescriptions: a national consultation on pharmaceutical policy issues. Healthcare policy = Politiques de sante. 2010; 6(2): 48–66

    Article  PubMed Central  PubMed  Google Scholar 

  39. Nadler E, Eckert B, Neumann PJ. Do oncologists believe new cancer drugs offer good value? The oncologist. 2006; 11(2): 90–95

    Article  PubMed  Google Scholar 

  40. Neumann PJ, Palmer JA, Nadler E, Fang C, Ubel P. Cancer Therapy Costs Influence Treatment: A National Survey Of Oncologists. Health Aff. 2010; 29(1): 196–202

    Article  Google Scholar 

  41. Robertson J, Walkom E, Bevan M, Newby D. Medicines and the media: news reports of medicines recommended for government reimbursement in Australia. BMC Public Health. 2013; 13(1): 489

    Article  PubMed Central  PubMed  Google Scholar 

  42. Romley JA, Sanchez Y, Penrod JR, Goldman DP. Survey results show that adults are willing to pay higher insurance premiums for generous coverage of specialty drugs. Health Affairs. 2012; 31(4): 683–690

    Article  PubMed  Google Scholar 

  43. Rosenberg-Yunger ZR, Thorsteinsdottir H, Daar AS, Martin DK. Stakeholder involvement in expensive drug recommendation decisions: an international perspective. Health Policy. 2012; 105(2–3): 226–235

    Article  PubMed  Google Scholar 

  44. Schrag D, Hanger M. Medical Oncologists’ Views on Communicating With Patients About Chemotherapy Costs: A Pilot Survey. Journal of Clinical Oncology. 2007; 25(2): 233–237

    Article  PubMed  Google Scholar 

  45. Sinclair S, Hagen NA, Chambers C, Manns B, Simon A, Browman GP. Accounting for reasonableness: Exploring the personal internal framework affecting decisions about cancer drug funding. Health Policy. 2008; 86(2–3): 381–390

    Article  PubMed  Google Scholar 

  46. Singer P. Priority setting for new technologies in medicine: qualitative case study. BMJ. 2000; 321(7272): 1316–1318

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  47. Thomson J, Schofield P, Mileshkin L, Agalianos E, Savulescu J, Zalcberg J, et al. Do oncologists discuss expensive anti-cancer drugs with their patients? Annals of Oncology. 2006; 17(4): 702–708

    Article  CAS  PubMed  Google Scholar 

  48. Ubel PA, Berry SR, Nadler E, Bell CM, Kozminski MA, Palmer JA, et al. In a survey, marked inconsistency in how oncologists judged value of high-cost cancer drugs in relation to gains in survival. Health Affairs. 2012; 31(4): 709–717

    Article  PubMed  Google Scholar 

  49. Wong YN, Hamilton O, Egleston B, Salador K, Murphy C, Meropol NJ. Understanding how out-of-pocket expenses, treatment value, and patient characteristics influence treatment choices. Oncologist. 2010; 15(6): 566–576

    Article  PubMed Central  PubMed  Google Scholar 

  50. Cohen, J., A. Wilson, et al. “Off-label use reimbursement.” Food and drug law journal. 2009 64(2): 391–403

    PubMed  Google Scholar 

  51. Daniels N. Accountability for reasonableness. BMJ. 2000; 321(7272): 1300–1301

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  52. Zweifel P, Manning WG. Chapter 8 Moral hazard and consumer incentives in health care. In: Anthony JC, Joseph PN, editors. Handbook of Health Economics: Elsevier; 2000. p. 409–459

    Google Scholar 

  53. Fenton E. Making Fair Funding Decisions for High-Cost Cancer Care: The Case of Herceptin in New Zealand. Public Health Ethics. 2010

    Google Scholar 

  54. Moynihan R, Heath I, Henry D, Götzsche PC. Selling sickness: the pharmaceutical industry and disease mongering / Commentary: Medicalisation of risk factors. BMJ. 2002; 324(7342): 886–891

    Article  PubMed Central  PubMed  Google Scholar 

  55. Boseley S. The selling of a wonder drug. Guardian. 2006; 29

    Google Scholar 

  56. Hope T. Rationing and life-saving treatments: should identifiable patients have higher priority? Journal of Medical Ethics. 2001; 27(3): 179–185

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  57. McKie J, Richardson J. The Rule of Rescue. Social Science & Medicine. 2003; 56(12): 2407–2419

    Article  Google Scholar 

  58. Hadorn DC. Setting health care priorities in Oregon. Cost-effectiveness meets the rule of rescue. JAMA. 1991; 265(17): 2218–25.

    CAS  Google Scholar 

  59. Weinstein MC. Should physicians be gatekeepers of medical resources? J Med Ethics. 2001; 27(4): 268–274

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  60. Jenni K, Loewenstein G. Explaining the Identifiable Victim Effect. Journal of Risk and Uncertainty. 1997; 14(3): 235–257

    Article  Google Scholar 

  61. Baltussen R, Niessen L. Priority setting of health interventions: the need for multi-criteria decision analysis. Cost effectiveness and resource allocation: C/E. 2006; 4: 14

    Article  PubMed Central  PubMed  Google Scholar 

  62. Daniels N, Sabin J. The ethics of accountability in managed care reform. Health Affairs. 1998; 17(5): 50–64

    Article  CAS  PubMed  Google Scholar 

  63. Rajender R. A. Research Methods for Pharmaceutical Practice and Policy. 2011

    Google Scholar 

Download references

Author information

Authors and Affiliations

  1. University of Auckland, Auckland, New Zealand

    Philip Wahlster, Shane Scahill, Sanjay Garg & Zaheer-Ud-Din Babar

Authors
  1. Philip Wahlster
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Shane Scahill
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Sanjay Garg
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Zaheer-Ud-Din Babar
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Zaheer-Ud-Din Babar.

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Wahlster, P., Scahill, S., Garg, S. et al. Identifying stakeholder opinion regarding access to “high-cost medicines”: A systematic review of the literature. cent.eur.j.med 9, 513–527 (2014). https://doi.org/10.2478/s11536-013-0286-y

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.2478/s11536-013-0286-y

Keywords

Search

Navigation