Addressing Global Breast Cancer Disparities with Vicki Durston v1 | United Against Cancer

In this episode of United Against Cancer, Vicki Durston, Director of Policy and Advocacy at Breast Cancer Network Australia (BCNA), joins host Zainab Shinkafi-Bagudu. Vicki shares insights into her role and discusses the disparities in breast cancer care in Australia, including the challenges faced by rural and Indigenous communities. She highlights the impact of the Lancet Breast Cancer Commission’s report, the importance of patient voices in policy-making, and how digital tools are improving data collection.

Vicki Durston serves as Strategic Board Advisor at Specialist Direct Pty Ltd and is the President of the General Assembly and Board Member of ABC Global Alliance. She is also a Board Director for the Victorian Amateur Football Association and Director of Policy, Advocacy, and Support Services at Breast Cancer Network Australia.

Zainab Shinkafi-Bagudu is a global cancer advocate, a pediatrician, a UICC Board Member,  Founder of the Medicaid Cancer Foundation, and the Chairperson of First Ladies Against Cancer (FLAC). Dr. Bagudu is working with the state ministries of health, education, and women affairs to implement programs to sustainably improve menstrual hygiene, girl-child education, economic empowerment of women, and put an end to gender-based violence. Zainab Shinkafi-Bagudu is a member of the Editorial Board of OncoDaily.

00:00 Recap
00:27 Introduction
01:20 Advocacy Rooted in Clinical Care
03:03 Bridging Cancer Care Gaps
05:30 Counting Metastatic Breast Cancer
10:00 Breast Cancer: Progress and Disparities

Zainab Shinkafi-Bagudu: Welcome to the United Against Cancer series. My name is Zainab Shinkab-Kibabudu.
I’m a pediatrician, a child health specialist and a cancer advocate, a board member of the Union for International Cancer Control and dedicated to improving cancer control and closing the disparities that we’re facing globally when it comes to different cancers. Thank you for joining us today and Vicky Durston is the Director of Policy and Advocacy. She’s a health leader and an advanced breast cancer specialist in particular.

She’s the President of the General Assembly and also is involved in amateur football. So tell us a little bit about yourself and your background, Vicky.

Vicki Durston: Thank you so much for having me.
It’s such a privilege to be here. Certainly my role at Breast Cancer Network Australia is, as you’ve mentioned, Director of Policy, Advocacy and Support Services. I have a background in health administration and health management, but my love for many, many years has been in cancer care and as a registered nurse working in both the public and private health care systems.
And so bring that clinical context to this role in policy and advocacy at Breast Cancer Network Australia. So enjoy the role thoroughly.

I’ve been in this role now for just on four and a half years.
And the role is to really work to drive the advocacy agenda for breast cancer in Australia, but leveraging of those with a lived experience and providing the very best in information and support for those people affected.

Zainab Shinkafi-Bagudu: That’s very interesting. We’re seeing a more prominent role played by patients with lived experiences and helping to shape and influence policies.

So it’s people like you that bring them together and actually translate the experiences they’ve had across the spectrum into policies that can improve the outcome in countries. And when you say breast cancer in Australia, of course, Australia is a high income country, a lot of high end technology available. But we also know that you have indigenous populations.

So it would be helpful if we have a little background about the picture of breast cancer in Australia.

Vicki Durston: What we know in Australia is that one in seven women will be diagnosed with breast cancer in Australia. And what we do know is that we have people living in rural and regional parts of Australia.

And so we know that disparities and access to care is very different for people living in those different regions and also in different cultural contexts. So we have Aboriginal and Torres Strait Islander communities. We also have our culturally linguistic diverse communities as well.

We also consider those with disability as well as those from LGBTIQ plus communities as well. So when we think about our advocacy, our information and support, we really need to cut through all those different groups and diverse populations, as well as considering location and where people might live and the access to treatment and care that they’re looking for. When we know that clinical trials are often in the metro areas or metro cities, and often sometimes challenging to access in rural and regional parts of Australia.

So those disparities create the inequities across this country. And so that is something that we always grapple with in the cancer control area of our work that we do.

Zainab Shinkafi-Bagudu: Yeah, I’d imagine so.

We face a lot of socioeconomic and cultural barriers that have to be considered when putting in place policies or even implementing them. And as you mentioned, you have a very wide range of people, both in terms of economy, capacity, location, geography, and that can make it sometimes complex. So what would you say are the socioeconomic factors that influence breast cancer outcomes that you have particularly addressed in the association, as well as being in the position that you’re in, in the ABC Alliance? And how have you used strategies to, what strategies have you employed in particular to address these wide disparities?

Vicki Durston: Yeah, look, it’s a really interesting question, and I’m not sure I have all the answers, but we certainly endeavour to work with our partners.

It is something that no one can do their own. I really feel strongly about that, that it is working with the health systems, and we have a federated model within Australia where we have state-based health systems. But also, it’s what are the learnings that can be shared? So when we talk about the role that we play globally on the ABC Global Alliance with our partners in metastatic breast cancer, we know the disparities for metastatic breast cancer are wider than those with early breast cancer.

When we think about the Lancet Breast Cancer Commission talked about these widening disparities for people with metastatic disease, those learnings, I think, can be shared in the sense that we want to work to understand some foundational data. So globally, what we’re trying to do, and we’ve started advocating for this, this is an example in Australia, where we want to try and establish some baseline data of understanding how many people are living with metastatic breast cancer, and being able to share that methodology around the world so that we can now ensure that those people become visible. Right now, those people are actually in our data systems invisible.

The campaign that we ran last year was, I count, I am counted, I want to be counted. And in order to be able to ensure that we can understand those unmet needs of all groups, whether it’s metastatic, whether it’s our Aboriginal and Torres Strait Islander groups, whatever groups they may be, they need to be counted in our data systems. And so to inform our policy, to inform priority planning for service delivery, for supportive care, to understand what their unmet needs, we want to get that real foundational piece sorted.

And so one of those big advocacy priorities for Breast Cancer Network Australia and in Australia through Cancer Australia is to build about some really strong data frameworks. And so be able to share that with the ABC Global Alliance and our global partners in Canada and in Portugal and with yourself and with the UICC and some of our other partners around the world. I think that foundational data is important because then we can start really diving into understanding what some of those economic, social economic needs are, but also what those unmet needs in different countries might look like.

I feel like I’m going all over the place.

Zainab Shinkafi-Bagudu: No, no, it’s amazing. It’s because of the type of work that you’re doing.
Once you’re involved in policy, you have to go all over the place. And in a country that is so large and diverse, it’s important that we cover, like you rightly said, the unmet needs. In that response, you talked about the Lancet Commission on Breast Cancer and also the role of Breast Cancer Network Australia.

Can we know a bit more about how that has helped you to amplify or should I say network globally? Because the Lancet is a high end journal and high impact journal, and the commissions have been particularly useful, that platform in putting together the data. And also maybe you can mention the digital revolution that we’re seeing across the world, not necessarily in terms of AI, but how digitalization is helping you to improve the data that you’re collecting. Obviously, for us in Africa, it’s not as advanced and health systems do need more technology.

So a lot of questions rammed in there. A bit about the Lancet Commission and the impacts of Breast Cancer Network Australia, as well as the digitalization of your data.

Vicki Durston: So what we learned from the Lancet Breast Cancer Commission report is that the notion that breast cancer has been solved is not accurate.

What that report is showing us is that often there’s a perception in Australia that with survival rates improving, that the effort and energy needs to be placed elsewhere. And so it is our role at Breast Cancer Network Australia, with our other partners within the not-for-profit space within Australia, working alongside Cancer Australia, our Cancer Council organizations

It’s really to ensure that it remains on the agenda and that our organization, we have over 60 what we call patient advocates or consumer representatives that are trained to ensure that the voice of those living with breast cancer is at the table when decisions are made, whether it’s by the Commonwealth government, whether it’s state government, they work with researchers to inform that that voice is always front and center, that they can ensure that that lived experience is not lost in all of this and the decision making.

But getting back to the report and what we’re seeing is we’ve still got a long way to go and these disparities are widening.
We know in Australia the economic climate is challenging, we know our health system around our country is under enormous pressure following the COVID epidemic, pandemic I should say.

And so what we’re seeing in this country is the disparities becoming widened, those financial out-of-pocket costs and those unmet needs for people that experience breast cancer, experience breast cancer treatment, extend well beyond their diagnosis.

And so what are those learnings that can be shared with other countries and how do we help in that space to be able to share those learnings?

To your next question around leveraging data and leveraging digital, I think certainly with Australia we’re on the cusp of real change around digital information and digital resourcing and I think what we’re seeing in AI is patients that are looking for that information, they’re looking to understand when I’m first diagnosed or I’m going through treatment, how can I get information in a timely way?

What we would say is we want people to ensure that they’re getting the reliable and best evidence information that’s right for them by reputable resources like our cancer control agencies, like Breast Cancer Network Australia.
And we’re really leveraging that digital, I suppose, mechanism or platform to be able to do that through our websites etc. So that is something that we’re working with the ABC Global Alliance where we’re sharing around the world our digital resources so that we can have them all housed in one location so people from around the world in different languages can access that evidence resources.