Demystifying advocacy

Mark Heywood answers five questions to help us understand what advocacy is and the current state of cancer advocacy in SA.

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You can listen to this article below, or by using your favourite podcast player at pod.link/buddiesforlife

1. What is advocacy?

Advocacy in general means when people or a person take steps to try and advance a particular issue. Advocacy doesn’t necessarily start with saying what we want but starts with educating people about an issue, so they have the knowledge they need to be able to engage with that issue.

In a sense, advocacy is quite an abstract term unless you attach it to a particular issue or cause and something you want to achieve through talking to other people, lobbying, writing, research, and so on.

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2. What is advocacy in cancer care?

In the case of cancer, for example, advocacy means how do we work to ensure there is better awareness of cancer, how do we work to ensure there is better care and better access to medicine.

We know in SA that cancer is a significant disease and there is a lot of fear and stigma around it, and we know that the healthcare system is not responding in the way that it could and in the best ways to ensure cancer prevention, diagnosis, care, and treatment. Like so many things in our society, cancer is marked by inequalities; if you’re dependent on the public healthcare system, you are far less likely to get the care, diagnosis, and treatment you need.

Cancer advocacy is targeting the people who run healthcare systems, whether they are private or public, to try and ensure those systems have the resources to meet all of the need and not just a fraction.

For most of my life, I worked on advocacy for HIV/AIDS and I feel like I have neglected cancer. It almost feels like the advocacy we did around HIV successfully, to get people access to treatment needs to be repeated around cancer to create the same levels of awareness, resources, and care that was built with HIV.

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3. Can anyone get involved in advocacy? 

The answer is yes. To some extent, everyone should get involved in advocacy. Wherever you are, there is an opportunity for advocacy. If you’re a doctor, nurse or healthcare worker and you see areas in the clinic, hospital or practice that could be run better, where there could be better care provided, more sensitivity, then there is space for advocacy.

If you’re a person living with cancer, there is a space for advocacy in your community for better understanding, side by side other people, for better access to diagnosis and treatment.

We need to demystify advocacy; advocacy is not something for specialists or people like me. Advocacy is about the steps and the measures we do to try and better our own lives and the lives of people around us. 

For me, advocacy is integral to community and cohesive society. 

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4. What is the current state of cancer advocacy in SA?

It’s growing stronger. We have organisations like Cancer Alliance which are uniting many different stakeholders and seeking to give a voice to the broad cancer community. This advocacy involves talking more to the government and putting pressure on them to improve cancer services. It also involves talking to all the people in the community. 

As a board member of Cancer Alliance, I feel the organisation is growing in stature and importance. 

But with that said, we need to do more. There are people living with cancer or may be undiagnosed who feel isolated, unsupported, and discriminated against and we have to become a voice for all of those people. 

When we talk about One Voice in the cancer community, it means gathering many voices, people working in many areas, and combining the many small voices into one large, effective, loud, well-informed, persuasive voice that can make a difference and bring about improvement. 

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5. What is needed to improve cancer advocacy in SA?

The biggest thing that is holding cancer advocacy back in SA in the lack of funding to allow organisations to carry out advocacy and activism, to build bridges between each other, to go into communities and advocate for cancer awareness. 

Fear and stigma are also barriers. As with HIV, there’s a certain point where you reach a critical mass, you’ve spoken long enough, loudly enough, and to enough people who have been persuaded that we begin to get a response to cancer that matches the challenges we face. But as we sit here today, that is not the case. There is a lot of work to be done, and I would urge every person and organisations to have a discussion on what they can do to advocate; start working today.