Overcoming the postcode lottery for people with cancer in NSW
In 2020, the NSW Parliament announced a formal inquiry, investigating the inequalities in health outcomes between people in regional and metropolitan NSW, including a specific focus on cancer and access to cancer care. This created an opportunity for Cancer Council to give a voice to people impacted by cancer across NSW.
Closing the gap in cancer outcomes
The care that is needed should be available to whoever needs it, regardless of where you live.
– Cancer patient
Cancer outcomes in NSW are among the best in the world, yet for people living in rural and remote NSW, this is not the case when compared to metropolitan areas. In fact, the chance of dying from cancer increases, the further the distance from a major city centre.
Cancer Council NSW’s Policy and Advocacy Manager, Bradley Gellert says that the ongoing inquiry gives a voice to people affected by cancer living in regional and remote NSW, who often face additional barriers when accessing cancer care and support.
“Little progress has been made in the past 20 years to close this gap, and evidence clearly demonstrates a person’s experience of cancer is a postcode lottery.
“We recognise COVID-19 has taken priority and we acknowledge the great public health efforts of the Government and NSW community so far. However, while COVID has stopped many things, it hasn’t stopped cancer.
“We are committed to reducing the burden of cancer for everyone in NSW and the inquiry gave us an opportunity to highlight inequity and what’s needed to turn things around. We undertook our own research, collecting stories and experiences and had a fantastic response, with 349 people taking part in our survey to share their experiences, as well as many more individual stories through focus groups. These findings were shared with Parliament in a formal submission, alongside evidence for how to improve cancer care.”
Identifying the barriers to cancer care: Cancer Council’s regional survey
In rural areas, the frustration of accessing cancer specialists and appointments adds so much stress to the person with cancer, that often they just give up.
– Person affected by cancer
The survey highlighted several barriers to cancer care for those living in rural or regional communities, that would not be an issue if they lived in a metropolitan area.
Bradley continues: “Our survey showed that 41% of people have difficulty accessing cancer care because of where they live, and 78% were concerned that where they live could affect their chances of surviving cancer. There are also financial issues that mean people in these communities are not receiving the level of care they should. One of the clearest things we hear from the people we assist is that they did not expect a cancer diagnosis to be so expensive. So much so, that 1 in 5 people with cancer in regional NSW report that they skip health appointments because of cost.”
Driving change across NSW
Travel and accommodation costs are often so great that many folk are financially unable to access the level of diagnosis and treatment they need.
– Cancer survivor
At the formal inquiry, which took place in October 2021, Cancer Council presented several recommendations to help close the gap on cancer care, including:
Lift reimbursement rates for the Isolated Patient Travel and Accommodation Assistance Scheme and broaden eligibility to ensure people are not forced to choose between getting cancer care or paying bills.
Address out-of-pocket costs for cancer treatment and associated costs because a person’s postcode should not determine whether they can afford treatment or not.
Invest in care coordination to help prevent people from getting lost in the system by linking them to the treatment options and the services that are available to support them.
Mr Gellert said: “We work closely with people affected by cancer in regional NSW, providing essential services such as transport, emergency financial support, accommodation, information, and supportive care. Our recommendations are based on evidence but also crucially from what we hear day-in-day-out from people affected by cancer
“There have been many lessons from the pandemic – one lesson that we can’t afford to ignore is while health inequalities exist, it diminishes the health of us all.”
Cancer Council is here to help those affected by cancer. For more information on our support services, call 13 11 20 or go to our Get Support section.