Making cancer outcome equity a reality

Christine Cockburn, CEO, Rare Cancers Australia, reflects on care disparities across populations and the role of personalised medicine in improving outcomes.

Cancer Australia recently launched Australia’s first comprehensive Cancer Plan.

The Plan broadly addresses six strategic areas highlighted to better coordinate the current infrastructure, modernise the frameworks underpinning the cancer sector and improve the patient experience and outcomes.

At Rare Cancers Australia (RCA), we have advocated for many years to recognise that although Australia has world-leading cancer survival outcomes, they are far from equitable, and we applaud the recognition in The Plan that there are great disparities across populations. What I would highlight, though, is that there are also significant disparities resulting from the type of cancer you’re diagnosed with.

And that demands further attention.

There are few people who haven’t heard of the concept of a rare cancer. Rare, unusual, not seen very often.

Rare cancers are defined by an incidence of fewer than six per 100,000 of the population, and less-common cancers are those with six to 12 cases per 100,000 of the population.

These cancers are characterised by an insidious profile of symptoms leading to late or misdiagnosis; few specialists who are experienced in treating them; few treatments provided on the Pharmaceutical Benefits Scheme (PBS); social isolation; staggering financial toxicity; and overall, much poorer outcomes than common cancers.

Most importantly, it must be recognised that all these rare and less common (RLC) cancers, when added together, represent 28% of all cancer diagnoses and 38% of all cancer deaths. Conversely, common cancers account for 73% of all diagnoses, and 62% of all cancer-related deaths. You don’t have to be a statistician to see the RLC data equates to a serious public health issue.

Much of the improvement of outcomes in cancer in Australia is the result of screening programs. Breast cancer, cervical cancer, prostate cancer and bowel cancer are screened through population-based programs, and we know early detection means better outcomes. Australia has an ambitious strategy to be the first country to eliminate cervical cancer by 2035.

Screening in RLC cancers, however, is problematic in two main ways:

1. They are many and varied, making the aetiology like finding a needle in a haystack.
2. Much of the origin or predisposition of RLC cancers is genetic. To make things even more challenging, I am not referring only to inheritable disease, but also to somatic disease.

RCA has supported hundreds if not thousands of people who were diagnosed with RLC cancers and had no modifiable lifestyle factors, and no family history; they have been overwhelmingly young and otherwise healthy. Ultimately that means that Australians diagnosed with an RLC cancer live in a world where treatment is paramount.

Cancer therapies are available to Australians on the PBS, and for the most part, out-of-pocket cost is little or nothing at all.

As we know, compelling clinical trial data and superior efficacy result in new medicines being added to the PBS regularly.

However, with small patient populations, clinical trial design is challenging. When there are just a handful of people with a certain cancer, how can a robust phase three randomised controlled trial ever be a reality?

Those diagnosed with RLC cancer cannot wait for a perfect system. This often results in their having to pay for treatment out-of-pocket to the tune of tens of thousands of dollars, while sometimes the person sitting in the chair next to them in the treatment room is on the very same therapy and is paying $31.60.

We have crowdfunded over $5m for RLC families whose treating clinician had a promising therapy for them, but it wasn’t reimbursed on the PBS for their cancer type.

The great promise in this RLC paradigm? Personalised medicine.

What we have learned over the last decade of research is that it isn’t where in the body the cancer is that defines how it should be treated, but what the molecular profile is.

When patients receive genomic profiling to guide their treatment plan, they have a level of information that can create an otherwise unknown pathway.

Drug development is increasingly focused on this molecular layer of cancer and understanding the true drivers means we might skip systemic, toxic, sometimes ineffective chemo regimens and hit the cancer where it hurts, earlier.

If we offer genomic profiling as personalised medicine and discover that a rare connective tissue cancer has the same genomic markers as a bowel cancer, might our knowledge of a common cancer plausibly benefit the RLC patient?

What we know from this new frontier of understanding cancer is that increasingly all cancers will become rare, and as we get sharper focus, a person’s cancer will be as unique as their fingerprint.

At RCA, we find that compelling food for thought for the way we support people with cancer, the way those people access cancer therapies and how an equity of outcomes could become a reality.

Image credit: iStock.com/nambitomo