Last week I had the pleasure of attending CanForum26 at Parliament House in Canberra, representing NeuroEndocrine Cancer Australia. Hosted by Rare Cancers Australia, CanForum brings together people living with cancer, carers, clinicians, researchers, industry and government.
This year there was a strong focus on access to treatment, clinical trials, genomics, precision oncology and what happens for people who live with cancer for a very long time. There was a lot to take in, but as always, the most powerful parts of the day were the stories from people with lived experience.
For the neuroendocrine cancer community, Lauren Rayner’s story was particularly poignant. Lauren is an oncology nurse and is also living with stage 4, grade 3 neuroendocrine carcinoma. She understands this system from both sides. Her experience highlighted something we talk about often at NECA: the inequity that can occur when a treatment exists and may be available in Australia, but is not funded for your particular cancer. Someone with another cancer may be able to receive exactly the same medicine through the PBS, while you are expected to pay for it yourself.
One comment from the day has stayed with me: “When is my life too expensive?”
It is a pretty confronting question. We know cancer treatment is changing. Increasingly, treatment decisions are being informed by the biology and molecular characteristics of a cancer rather than simply the organ it started in. Our funding systems need to keep up. There has been some progress, including recent pan-tumour listings, and that should be acknowledged. But a handful of individual treatments do not address the broader issue of access.
There was also a lot of discussion about what was described as the long middle. The long middle is a very good description of the experience of many people living with neuroendocrine cancer. For many people, cancer is not a diagnosis, treatment and then an end point. It is years of scans, appointments, treatment decisions, periods of stability, progression, changing treatments and living with uncertainty. Many neuroendocrine cancers are treatable but not curable. Cancer doesn’t necessarily end when treatment ends either.
Support services, specialist nurses, nutrition, information, navigation and someone who actually understands your cancer remain important well beyond the first treatment decision. That is one reason disease-specific organisations and services are so important. Neuroendocrine cancer sits slightly differently in this conversation. Individual neuroendocrine cancers can be rare, but collectively neuroendocrine neoplasms are no longer as rare as many people believe. More Australians are being diagnosed, and more people are living for many years with the disease. That means neuroendocrine cancer needs to be recognised in its own right, and investment in specialist services and support needs to keep pace with the growing number of people living with it.
Genomic testing and precision oncology also came up throughout the day, particularly in the context of better matching people to treatments and clinical trials. The simplest way I heard it described was: right patient, right drug, right trial. The science in this space is moving incredibly quickly. The concern is whether our systems can keep up. There is little point identifying the most appropriate treatment or trial for someone if they cannot access it because of where they live, what they can afford or how that treatment happens to be funded.
Health Minister Mark Butler and Shadow Health Minister Anne Ruston both spoke during the day. Interestingly, one of the most honest conversations I overheard all day happened in the bathroom queue. Someone commented that cancer treatment really shouldn’t be so political. In an ideal world, with unlimited resources, perhaps it wouldn’t be. But decisions about what we fund, what technologies we support and how quickly people can access new treatments are public policy decisions. And those decisions have very real consequences for people.
It has been five years since The New Frontier – Delivering better health for all Australians. We have since had the HTA Review and the Senate inquiry into equitable access to diagnosis and treatment for rare and less common cancers, which specifically included neuroendocrine cancer. We have had reviews, inquiries, reports and recommendations. Some things have changed, but not enough. We do not need another review of the reviews. Australia has excellent clinicians and researchers and access to extraordinary medical technology. We should also be able to give Australians timely access to treatments and technologies already used elsewhere in the world. People should not have to travel overseas, use their superannuation, remortgage their home or fundraise because a treatment that might help them is not funded for their particular cancer when it may be funded for someone else. And we shouldn’t forget that everyone’s experience of cancer is different. One speaker described it as a road. Some people have long straight stretches. Others have curves, steep climbs and periods where the road is wonderfully flat for a while. There is no standard cancer journey. For people living with neuroendocrine cancer in particular, it can be a very long road. Our job is to make sure they have the treatment, information, specialist care and support they need for all of it.
Kirsty Mead
NECA Board Member
