Addressing Global Breast Cancer Disparities with Vicki Durston v2 | 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.

00:00Recap
01:25 Shaping Cancer Policy
05:30 Symbols of Inclusivity
07:40 Navigating Life Beyond Cancer
11:04 Pivotal Power of Partnerships
14:15 Conclusion

Zainab Shinkafi-Bagudu: It’s important, like you said, the voices of patients and recently the last World Health Assembly, we saw the World Health Assembly pass a resolution about having more inclusion, so it’s great to know that countries like Australia have put on to this even earlier and also of course fantastic that a body like the WHA is now making it a resolution and so more people will come onto that network and be able to impact more.

Would you say that the patient voices are actually being included in policies in Australia and what kind of recent changes have you had in policy to do with breast cancer that has impacted the lives of patients, either positively or negatively?
Let’s hear a bit about those policies that you work with.

Vicki Durston: Yeah, it’s a really good question and I believe that there is real appetite and investment from our government but also from the sector to really ensure that lived experience is part of the narrative but also part of policy reform and we’re starting to see that within and for a long time Cancer Australia, who’s our cancer control agency within Australia, has worked really hard to build about the consumer voice across our building out what is now our very first ever Australian cancer plan

So consumers and if you like we call them consumers those that we work with at Breast Cancer Network Australia, our advocates within Australia really work towards ensuring that they have that voice to inform policy and so one of the examples that I could share with you was a breast cancer report that we led at Breast Cancer Network Australia which was around the access to breast reconstruction following a breast cancer diagnosis

And what we saw was that those people who completed our survey and were part of our research worked with us that then led to the development of a collaborative group between the surgical college, the plastic surgeon college and also the consumer voice which is Breast Cancer Network Australia and we’ve created this collaborative group that is now working together to really advocate for access to breast reconstruction following a breast cancer diagnosis

And so really it’s translating those activities and that research into real advocacy that will inform policy so we’re looking to develop a position statement we’re in the process of that project at the moment to really see women at high risk who are wanting to have a prophylactic mastectomy to prevent or if you like to reduce their risk of getting breast cancer get access to doing that so we’re in that process at the moment but we have a number of examples where like I’d mentioned the breast cancer work that we did around the metastatic roadmap

So building out when people with metastatic breast cancer weren’t being counted in our cancer registries they worked with us to advocate and build about a roadmap with the sector to inform policy changes to the way that we collect and collate staging and recurrence data for breast cancer and as a result we’re starting to see the implementation of a new data framework within our country but also the way that we collect this data so there are many examples that we’re starting to see really shape policy reform and have done for many years that’s how BCNA started from consumers and their voices advocating for change back in 26 years ago

And the pink lady was this organisation starting from those voices and there have been many achievements to access to medications, access to Herceptin which was a drug that really paved the way in Australia and that was driven by this organisation many many years ago so it is at the heart of what we do but certainly you know well recognised within Australia now that co-design, co-participation and informing policy related to disease is pivotal to have that consumer lens and lived experience at the table.
Thank you.

Zainab Shinkafi-Bagudu: I was going to ask about the pink lady and the flags, what does that stand for?

Vicki Durston: This is reflective of our organisation, the pink lady is a symbol of people affected by breast cancer, it was founded 26 years ago and so now we’re looking to ensure that those people affected by breast cancer and we have behind me, I don’t know if you can see behind me there, we’ve got the little blue man, we know that men with breast cancer are affected. Our two flags, so our Australian flag there and also our Aboriginal flag, our First Nations flag is in the background as well that reflects you know our country but also our organisation being Breast Cancer Network Australia and representing all those affected by breast cancer.

Zainab Shinkafi-Bagudu: That’s interesting, that’s very interesting and I was looking on your LinkedIn profile and one of your posts talked about the problems that a lady that had breast cancer faced navigating the system, I mean you mentioned several stories and alluded to something like that, how is it we think that over here because where you know navigation can be a problem, awareness is so poor that even the little policies and you know should I say programs that are available for cancer patients including metastatic ones to access are not widely known about

so it struck me that this is not something that only low-income countries face, even in a system whereby there are facilities available and you have the solutions for cancer, it can be difficult navigating the system.

How has the network and the 60 organisations that you speak about, how have you found your patients, how easy or how difficult it is to navigate the system and why you highlighted that story in particular?

Vicki Durston: Yeah it’s a really important discussion and something that has been on the agenda in Australia and is of great interest. There’s been investment by our government to a number of not-for-profit organisations and organisations like us to really help with navigation and support that sits outside of what is the traditional hospital healthcare system

but supports the healthcare system because we know that someone that’s diagnosed with cancer, not just breast cancer, navigates the complexities from early diagnosis right through the trajectory if you like of treatments and side effects and they might be in the system in having acute care treatment but then long outside of that they then are trying to work to come back into the workforce if they’re looking to come back to work after treatment or during treatment.

How do they remain well living with a diagnosis? For those with metastatic breast cancer we know people are a lot longer with metastatic breast cancer with the access to treatments that they can get within Australia but also people with early breast cancer are looking for services and the ability to help them live well beyond their treatment when they’ve finished treatment for early breast cancer.

So it’s in that area of supportive care that’s often not available within the health system or might be because the health system is under pressure or also because it might only be available in certain hospitals in certain regions of Australia but also it might be during that time when they’re having their treatment but then well beyond that they might be looking for those services to help them live well with and beyond breast cancer.

So I think that that’s the role that organisations like us can play but also to having to navigate private versus the public health system, waiting times, access to clinical trials, it can be very overwhelming and people tell us that you know it’s often very difficult to navigate and yeah I think there’s a real investment to try and see the sector coming together to help support that.

Zainab Shinkafi-Bagudu: So thank you for that. As I mentioned I am a board member of the Union for International Cancer Control the UICC and it’s a global body that has different partnerships within Europe outside globally actually. So you mentioned that you have partnerships with organisations like that including the UICC so if we zone down to that particular partnership and the collaborations that you’ve had over the years how would you say it affects your work, it helps or doesn’t help your work and also the importance of having partnerships both within country and out of country?

Vicki Durston: It’s such a great question. Partnerships are pivotal I mean you can’t achieve what you achieve without partnerships whether they’re through lived experience or whether they’re through state-based and charity organisations, whether they’re through the relationships that you have with health professionals that give their career and their life to improving the lives of people with cancer but then also our global, the UICC, the ABC Global Alliance

because it’s how we all come together, understand those learnings, understand where the efforts need to be placed and where those unmet needs are and where we can really inform and improve the lives of people living with disease and I think you know if ever there was a time and I think certainly after what we’ve experienced over the last few years

your partnerships are pivotal and we have that opportunity now through things like this, this digital world that we live in to absolutely come together and connect from around the world as we understand the latest research and evidence to inform guidelines and really share those guidelines from around the world and I think yeah those partnerships are pivotal so that’s our position. We’ll continue to endeavour to work with our partners to see that come to life.

Zainab Shinkafi-Bagudu: Thank you so much Vicky for sharing a little bit about the work that you’re doing, very important in Australia and globally, informing policies, working with patients, amplifying lived experiences for breast cancer patients, both early and metastatic, your alliances with global organisations, the impact that the sharing, the work that is going on and the data more importantly in Australia on the Lancet Commission for Breast Cancer has had and how you tie all these together all towards one goal, to having better outcomes for patients living with breast cancer wherever they are, whatever their race, geographical location, ethnicity and so on and the importance of really, really amplifying that lived experience.

I thank you so much for your time this morning and I hope that we will all be impacted by it and it will push us to do better.

Thank you Vicky. Before I go I’m going to ask you to stay united against cancer because really I think of all the interviews we’ve had this has been an epitome of how it is so necessary to unite the voice, the patients and the opportunities that we have to improve the outcomes. We really need to unite it so I want you to stay united against cancer.

Vicki Durston: United against cancer and thank you for all that you do because I think it’s just you’re doing incredible work and we can only do it together in partnership so thank you.