The case of cancer drugs: An ongoing dilemma and the need for public engagement
Making coverage decisions – also known as “priority-setting” – for cancer drugs has become increasingly complex for governments. The rise in cancer cases means more services and treatments are needed. The introduction of innovative technologies has made it possible to detect cancers at an earlier stage, while improved treatment options mean people are living longer. Further, many new cancer drugs come to market with big price tags and some policymakers are worried that the costs might not justify the often-small increase in health benefits they provide (Woods, Coppes, & Coldman, 2015). Since health care resources are limited and budgets are constrained, not every drug can be covered by the government and tough decisions must be made.
Cancer drug coverage decisions are made differently in each province and the persons tasked with these decisions are dependent on how the health care system is set up. Usually it is a team of senior executives and clinicians, either at a cancer agency such as BC Cancer or the Ministry of Health, in Alberta. Sometimes, a patient is involved, but this isn’t always the case. Recently, there has been some concern about the differences of cancer drug coverage between provinces (Srikanthan, Penner, Chan, Sabharwal, & Grill, 2018). Certain drugs might only be available in specific provinces and not in others – despite all provinces accessing the same evidence. This variability in provincial coverage raises questions about how these decisions are being made and if there are other things influencing the outcome, like politics or media. In most provinces, the reasons behind a coverage decision are not publicly available, so we don’t know. This is concerning because the lack of transparency often results in mistrust between government and its people. So how can policymakers ensure their decisions are fair and reflect public values?
One way to contribute to a fair process is to offer opportunities for the public to participate in these tough health care coverage decisions (Gibson, Martin, & Singer, 2004). Since these choices often mean encountering highly ethical issues – a matter of life or death– it is important that the policies align with citizen values. In fact, the Ottawa Charter for Health Promotion strongly encourages public participation in health care matters (Ottawa Charter for Health Promotion, 1986).
We are beginning to see decision makers turn to the public for guidance in developing solutions to these dilemmas. A group of Canadian researchers have created innovative ways for the public to become involved in cancer care (Mitton, Smith, Peacock, Evoy, & Abelson, 2009). “Public deliberation” is a choice-making activity that brings together members of the population together to understand what values are important to them. It is not for every policy issue – some situations simply need a poll or survey. However, as cancer cases rise and treatments become more expensive, decisions often mean highly ethical choices. Public deliberations’ in-depth, value focus is a good fit for cancer care.
Canadian researchers have created opportunities for public deliberation on a variety of topics in cancer care. This includes cancer drug coverage and service provision decisions across the whole care continuum (Bentley et al., 2017; Costa et al., 2019). However, these opportunities are mainly driven by researchers rather than the policymakers. Since decisions in cancer care affect many people, there is a need to create systems that encourage public and patient participation on a regular basis.
The tension of fair and equal access across populations is a constant challenge for governments in health care decisions. Funds are not unlimited, and a choice will always need to be made. This challenge is especially felt in cancer care, where the use and costs of treatments and drugs are increasing, and the health benefit is becoming smaller. However, creating systems that encourage public voices can ensure that the outcomes of those decisions reflect the values of Canadians.
- Bentley, C., Abelson, J., Burgess, M. M., Peacock, S., Dpayette, O., Lavis, J. N., & Wilson, M. G. (2017). Making Fair and Sustainable Decisions about Funding for Cancer Drugs in Canada Final Report Making Fair and Sustainable Decisions about Funding for Cancer Drugs in Canada-Final Report 2017. https://cc-arcc.ca/wp-content/uploads/2017/10/EN-Making-Fair-and-Sustainable-Decisions-about-Funding-for-Cancer-Drugs-Final-Report-March-31-2017.pdf
- Costa, S., Bentley, C., Regier, D. A., Mctaggart-Cowan, H., Mitton, C., Burgess, M. M., & Peacock, S. J. (2019). Public perspectives on disinvestments in drug funding: results from a Canadian deliberative public engagement event on cancer drugs. BMC Public Health, 19(977), 1–10. https://doi.org/10.1186/s12889-019-7303-2
- Gibson, J. L., Martin, D. K., & Singer, P. A. (2004). Setting priorities in health care organizations: criteria, processes, and parameters of success. BMC Health Services Research, 4, 1–8. https://doi.org/10.1186/1472-6963-4-25
- Mitton, C., Smith, N., Peacock, S., Evoy, B., & Abelson, J. (2009). Public participation in health care priority setting: A scoping review. Health Policy, 91(3), 219–228. https://doi.org/10.1016/j.healthpol.2009.01.005
- Ottawa charter for health promotion. (1986). Health Promotion International, 1(4), 405. https://doi.org/10.1093/heapro/1.4.405
- Peacock, S., Bentley, C., Regler, D., Burgess, M. M., & CanEngage. (2014). Making Decisions about Funding for Cancer Drugs: A deliberate public engagement - Summary report.
- Srikanthan, A., Penner, N., Chan, K., Sabharwal, M., & Grill, A. (2018). Understanding the
- reasons for provincial discordance in cancer drug funding-a survey of policymakers. Current oncology (Toronto, Ont.), 25(4), 257–261. https://doi.org/10.3747/co.25.3993
- Woods, R. R., Coppes, M. J., & Coldman, A. J. (2015). Cancer incidence in British Columbia
- expected to grow by 57% from 2012 to 2030. BC Medical Journal, 57(5), 190–196.