Clinicians shouldn’t hesitate to get involved in advocacy for health policy change as patients expect and deserve it and the effort can be rewarding.
Professor Kelly Phillips, from Peter MacCallum Cancer Centre, told the MOGA ASM that the benefits of being involved in advocacy far outweighed any costs in terms of time commitment.
“As medical oncologists, we advocate for patients on an individual basis every day. It’s absolutely the responsibility of clinicians, academic clinicians and particularly researchers to advocate for change in the health system particularly where the evidence base is available.”
“We don’t talk about it much but we do have a problem with equity of access to drugs if they are not on the PBS.”
Professor Phillips outlined her role in the 10-year process to have tamoxifen listed on the PBS for the primary prevention of breast cancer in high-risk women.
She said while there was evidence for tamoxifen from 2006 with the IBIS-1 study, uptake was still low in 2008. Its use was not endorsed in national guidelines, the drug was not listed on the PBS, and cost was a self-reported barrier in some women.
“This was solid evidence – a game changer – but the information wasn’t filtering into a change in clinical practice.”
She said successful lobbying to Cancer Australia resulted in a change in guidelines by 2010.
In 2011 Professor Phillips developed a position paper, which was tabled at the MOGA Drugs Roundtable in the presence of the PBAC chair. By 2012, she had enlisted the support of consumer groups including the Breast Cancer Network Australia, Cancer Council Victoria and Cancer Council Australia.
A partnership was established with AstraZeneca from about 2013 to sponsor the PBAC submission. Tamoxifen was finally listed on the PBS for the primary prevention of breast cancer in October 2016.
Professor Phillips said while the process was more tortuous than she could have imagined at the outset, in the end it was certainly worthwhile.
“There were many more rewards than costs in terms of personally feeling like you have made a change and contributed. You actually garner respect from your colleagues for sticking your neck out as well.”
Professor Phillips has since been involved in an advocacy project to have goserelin listed on the PBS to prevent chemotherapy induced menopause.
She said the evidence shows goserelin can reduce the risk of ovarian failure by 70% at two years and she is hopeful of a positive PBAC decision within the next two weeks.