[Originally published in Consumers Health Forum of Australia Journal and DrinkTank.org.au in November 2015 and February 2016]

Governments can be reluctant to adopt policies to prevent cancer, even when there is clear evidence for action. Reasons for this include lobbying by industries profiting from products such as tobacco, alcohol, junk food, and the absence of an active constituency for prevention.

Evidence alone is rarely enough to move politicians to action, particularly if there are strong profit-driven industry interests. But this can be countered using a resource that already exists in our communities – people power. We need to convert latent support into community action, to show politicians that there is public interest in prevention.

[Originally published in Croakey on October 6 2015]

Amidst all the discussion of health costs last week you might have missed an important piece of good news: from this month, patients in NSW requiring treatment with Section 100 Highly Specialised Drugs, and Section 100 injectable and infusible chemotherapy medicines will no longer be charged a co-payment for their therapies.

Those spared the co-payment include people with a range of chronic conditions including HIV, organ transplants, schizophrenia, hepatitis, inflammatory bowel disease and inflammatory arthritis but, as Anita Tang from Cancer Council NSW writes below, the impetus for change was grassroots advocacy by those in the extended cancer community, in the lead-up to the 2015 NSW State election.

Could this be a prototype for future campaigns?

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Anita Tang writes:

From 1 October, patients in NSW with cancer or chronic health conditions will no longer pay the gap fee on highly specialised drugs.  The State Government estimates that tens of thousands of people will be around $1,400 better off each year.

This election promise will cost the NSW Government $76 million over four years. How did such a significant initiative come to pass, in a tight health budget, to solve a problem that few people realised existed?

Up until now, some public hospitals charged cancer patients the co-payment on chemotherapy drugs. Cancer Council NSW, Cancer Voices, and the Breast Cancer Network of Australia had been asking the Minister to address this issue since at least 2011.

Cancer Council NSW included the issue as part of its policy agenda for the NSW March 2015 State election. Our aim was for all major parties to commit to abolish the co-payment in the lead up to the election. Our “Vision for Change” outlined evidence of the problem, and recommendations for government action, for this and other issues.

Our Saving Life 2015 pre-election campaign focused on informing local MPs and candidates about how these issues affected their constituents. Our ultimate aim was to influence the policy agenda of the next State Government.

Making chemotherapy an election issue

During the campaign, community members had over 150 meetings with candidates, reaching 71% of all 93 state electorates, explaining how the cost of chemotherapy added to the stress of cancer. At each of these meetings, community members asked the local MP or candidate to raise the issue within their party. Community members also arranged local media coverage, or a photo about the meeting, providing the local candidate with the chance to commit to act.

As a result of these meetings, the media coverage, and community events, the issue of chemotherapy co-payments became the subject of public and Parliamentary discourse.*

The NSW ALP was the first to promise to abolish the co-payment on chemotherapy drugs, at its election launch held in 28 February 2015.

Personal contacts, true stories

On World Cancer Day (4th February 2015), Cancer Council NSW arranged for the Premier to meet people who had been affected by cancer. One of these people was Nicole, a widow who told the Premier how it had felt to receive bills for the chemotherapy that was prolonging her husband’s life.

In March, the NSW Liberals and Nationals promised to remove the gap fee on all highly specialised drugs, as part of their election launch. And in his speech, the Premier referred specifically to his meeting with Nicole.

Throughout the campaign, community advocates seized some key opportunities. One of the most determined community advocates for this issue lives in Bega, the seat of Andrew Constance, who was the Treasurer at the time. She met with him on several occasions, sharing her own story about the cost of chemotherapy. Another community advocate attended a business event in her local community where the Premier was present. She took the chance to brief him on Vision for Change.  In early March, a dedicated community advocate called a talkback radio segment while the Premier was on air. He asked the Premier if the Government would match the ALP promise. The response was “We have been in strong discussions with the Cancer Council about this, it is something we are considering.”

Passion and determination led to a win

The Cancer Council has trained and supported community members in advocacy and political engagement. This investment enabled people to take these opportunistic actions during the campaign.  This grassroots campaign worked because we had nurtured activism amongst our volunteers and supporters. Individual advocates met with MPs and candidates, held community events, and secured media coverage.

Andrew Constance referred to the role of local advocates in his own media statement about abolishing the co-payment.  He referred to them by name, noting that they “were passionate and determined to see this outcome when they raised the co-payment concerns with me in 2014.”

Patients with cancer and chronic conditions are the immediate beneficiaries of the Cancer Council campaign. On average, these patients will be around $1,400 better off each year. But this campaign win has also transformed those community members involved in it. Each of these individuals now knows that they can make a difference as an active citizen.

People involved in advocacy often refer to the Margaret Mead quote “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed it’s the only thing that ever has.” This story is just one example that confirms the truth of this saying. Our experience highlights the importance of nurturing these groups of committed citizens.

Health advocacy organisations could increase their impact by harnessing the energy of committed citizens. Creating people-powered grassroots campaigns helps win changes in health policy.

Anita Tang is the former Manager, Policy and Advocacy, at Cancer Council NSW
Editor: Dr Ruth Armstrong

* There were more than 200 media stories on the Saving Life campaign, reaching over 80 electorates, most more than twice. Examples of parliamentary discussion include Dr John Kaye on 10 Sept 2013; Alex Greenwich on 22 Oct 2014

[Originally published in CancerForum in July 2015]

Abstract
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The increasing amount of research demonstrating the needs of people finishing their cancer treatment brings an increasing amount of discussion within the health sector as how to address these needs in an effective way, regardless of geographic location. The puzzle of how much, when, where and how is a conversation that echoes across Australia, a country which holds a maze of differing health systems across the states and territories. Specialist care is vital for the cancer patient, however what happens afterwards can be a puzzle for many people finishing their treatment. Opening the dialogue between health professionals, consumer groups, cancer charities, government bodies and people affected by cancer has the potential to have a strategic impact for reach and effectiveness with post treatment care. In order to assist the growing number of cancer survivors in this country no matter where they live, we need to have a collaborative approach to post treatment care recognising that 'one size doesn’t fit all'.

[Originally published on CanAct.com.au and Facebook in February 2014]

Lately I have been running training sessions for community organisers and campaigners, and found myself repeatedly referring to the insights and lessons from Strategy and Soul - a great book by Daniel Hunter, about the campaign to stop casinos in Philadelphia. I thought it might be useful to post some of my reflections, originally shared after hearing Daniel speak at an event in early 2014.

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I first read Strategy and Soul in 2013 and have been recommending it to everyone with an interest in campaigning and organising. The first person narrative gives the book immense power. You become immersed in the fight against casinos, while also having a birds-eye view of the campaign, and access to the insights of the author, Daniel Hunter, who never misses a teachable moment.

So when the chance came to meet Daniel in Sydney and to hear more of his insights from the campaign, I leapt at the opportunity!

The book itself is full of lessons, insights, and practical tips on almost every page – far too many to summarise. Listening to Daniel in Sydney though, helped crystallise 5 particular insights from his work.

Being involved in an issue makes you more passionate about it
Daniel mentioned that until he became involved in the Philadelphia casino campaign, he would not have regarded himself as a strongly ‘anti-casino’ person. But working on the issue, hearing the stories of people affected, and learning more about casinos, provided the emotional and intellectual fuel for the fight.

I have found this to be true in my own experience as well. I had no particular reason to be passionate about running campaigns related to cancer. I had no personal ‘cancer story.’ But once I started talking to people about what needed fixing in the ‘cancer system’ and seeing how big industries were standing in the way of public health initiatives, I was fired up!

For me, this insight is a reminder that when looking for leaders and supporters for our campaigns, we shouldn’t just be looking for those already passionate about the issue. Many people are moved to act not because of the particulars of the issue, but because it reflects an injustice. It was a good reminder that there are values that people hold dear, and seeing those values violated will move people to action.

Find the values that will ground your campaign and engage people
Daniel and his team ran several discrete campaigns as part of the fight against casinos in Philadelphia. Although each was designed to create a wedge against the casinos, they were not explicitly anti-casino. The approach, as Daniel described it, was to find the ‘duh issues’ – the things that most people would agree with, even if they weren’t particularly anti-casino. Operation Transparency questioned the legitimacy of decisions already made about casino planning and approvals; and No Way without Our Say focused on giving citizens a voice in creating a buffer zone around casinos. These helped to frame around a position that people could support, while making it harder for the casino developments to progress.

This elegant approach led me to wonder about how people decide when to adopt this more intermediate approach, and when to move directly to the ultimate ask (eg “ban casinos now”). We could probably all benefit from a decision making guide or model that encourages groups to consider the value of the ‘duh issue’ approach when appropriate.

Using setbacks to move you forward
Reading Strategy and Soul was a bit like watching one of those dramatic thrillers where for every step forward, a new obstacle appeared – truly a roller-coaster. I think this is part of the appeal of the book: it is full of tension, and reflects the challenges of campaigning.

But rather than leaving us despondent and feeling beaten down, Daniel shows us how to use setbacks to move our issue forward and to build strength. Sure, we’d all prefer not to have any setbacks and losing moments, but since they are going to be there whether we want them or not, far better to deal with them with equanimity and use them strategically.

One thing that helps is to have language and processes that normalise them. When faced with a major blow to the campaign, one of his colleagues spoke about it as a ‘course correction point’ – a spot to take stock, refocus on the goal and find another way to get there.

Other important lessons included – providing your supporters with a mechanism to express collective outrage about the turn of events; making sure they hear the bad news from you not via the media (where it is likely to be framed by your opponents); and the chance to use setbacks to find new allies.

One great idea mentioned in Strategy and Soul involving eliciting people’s commitment to an “If (this happens), then (we will do this action).”  This helps condition people about setbacks while also preparing for stronger action. Having people sign up the ‘if, then’ pledge means that a campaign can move quickly to action if the ‘that’ circumstance arising. And if the setback doesn’t happen, it has helped continue recruitment for the cause.

Decisions about campaign directions is balanced between leaders and members
One of the constant tensions in community organising is in the balance between making decisions efficiently while working in a distributed leadership model. Daniel pointed out that even with a small executive team making decisions about a campaign, it remains democratic because everyone involved can exercise the choice of being involved or not. So even with centralised decision making, it is the members and supporters that ultimately decide if any idea or an action will work.

One way to think about managing the balance between where leaders want to take the movement and where members are likely to be comfortable involves ‘pacing and leading’ – starting where people are comfortable (pacing) before helping people move outside of their comfort zones (leading) and preparing them to make the leap to more radical positions and actions.

I think this is a sobering reminder to those of us who are making decisions about campaign actions or timetables – that the ultimate test of our decisions will be in the field, and by those we are working with, and that if not careful, we may face the ultimate defeat at the hands of our own members.

Even unwinnable campaigns can be won – you need good strategy and strong soul
Trying to stop casinos in Philadelphia was, in the opinion of many, an unwinnable fight. Certain processes had already been completed and people were talking about it as a ‘done deal’. Yet a group of concerned citizens took it on anyway. The campaign represents the importance of commitment before strategy (see also Ganz Why David Sometime Wins). Once people make a commitment to do something, they find a way. People involved in advocacy (particularly those in more established NGOs) sometimes say that ‘feasibility’ should be one of the criteria for deciding what issues to pursue. Strategy and Soul is a great example of the opposite approach. First decide what is worth fighting for, and then find a way to do it, even if everyone around you is saying that it is not possible.

I think this sentiment was best captured by Amanda McKenzie on the afternoon, who reflected that Daniel’s story reminded us about “Not being held back by what people think is possible but focusing on what is needed”.

And finally:
It is a little embarrassing to admit, but until hearing Daniel talk about the need to balance strategy and soul in campaigning, I had not really given a lot of thought to the title of the book! But it has made me think about the need to make sure that you balance your team with people who are strong in strategy with those who are strong in soul, and to be more open to the ‘wisdom style of strategy’ rather than thinking of strategy as a written document. There was also a very interesting snippet of a conversation about cultural diversity providing a better balance of strategy and soul, and implications for Australia where our campaigning efforts are not as culturally diverse. Hopefully there will be a chance to explore that discussion further!

Thanks to the newly formed  Sydney Campaigners Network for arranging the session. It was a great chance to hear directly from Daniel and to think more about the insights from his experience.
Anita Tang, February 2014 

[Originally published in intouch in February 2013]

​The cancer disparities for Aboriginal people are undeniable - Aboriginal people are 60 per cent more likely to die from their cancer diagnosis than non-Aboriginal people. For a non-proft dedicated to defeating cancer, we needed substantial action to tackle cancer amongst Aboriginal people.

We wanted to do more than offer sporadic programs for Aboriginal communities. We recognised that we need to fundamentally change the way we engage with Aboriginal people so that it was not just seen as the responsibility of those few people who happened to be delivering specifc programs. We wanted to create an internal culture where all staff and volunteers would take responsibility for Aboriginal engagement relevant to their own role, whether in fundraising, volunteer recruitment, community engagement or HR.

But we faced some challenges. There was no specifc position in the organisation dedicated to Aboriginal programs or engagement; only one dedicated Aboriginal staff position (part of a research project), and no specifc budget for Aboriginal engagement. However, we had enthusiastic staff willing to step up to help progress our work in this area and the support of our formal leadership, including at CEO level.

We decided to adopt the Reconciliation Action Plan (RAP) model as the vehicle for developing our organisational strategy because of its structured format; linked to a nationally recognised model; and because it required us to consider our internal organisational practices as well as external program delivery.

We set ourselves a tight timeframe with our Statement of Intent in November 2011 committing us to having a RAP by May 2012. We also set ourselves an ambitious process for developing the RAP, making a deliberate decision to be as inclusive as possible and to adopt a distributed leadership model. We invited 20 staff to take on the role of ‘Yarn-Up Leaders’ - responsible for working in pairs to host and report back on at least two discussion forums (Yarn-Ups) with staff, volunteers and community stakeholders. We held 24 Yarn-Up sessions across NSW involving almost 280 people including 132 from Aboriginal organisations and communities.

The Yarn-Up sessions generated over 900 suggestions for how Cancer Council NSW could demonstrate respect, build relationships, and create opportunities for Aboriginal people, including many ideas about improving the appropriateness and accessibility of our own programs and services. From the beginning, the helpful staff at Reconciliation Australia and many Aboriginal people we spoke to had warned us about the need to take ‘small steps’; and that any substantial initiatives needed to be developed in partnership with Aboriginal people. For this to happen, we needed to allow time and energy to build trusting, mutually respectful relationships. With these words of wisdom ringing in our ears, the Yarn-Up Leaders took the 900+ ideas to a two-day retreat for some highly disciplined collation, synthesis, pruning and prioritising. We came away from this effort with a draft RAP, which we circulated to all Yarn-Up participants, and internal stakeholders for comment. During this stage, there was much discussion about wording of ‘measurable targets’ – how would we hold ourselves publicly accountable for our planned actions in a way that balanced aspiration with feasibility?

Our RAP http://www.cancercouncil.com.au/wp-content/uploads/2012/10/CC6580-CC-RAP-Brochure-FA-for-Web.pdf outlines specifc commitments to include Aboriginal perspectives in our work, and to continue to build our relationships with the Aboriginal community in order to encourage more Aboriginal people to address cancer. We have also identifed practical actions to respect and celebrate Aboriginal culture and develop a culturally supportive workplace. Our plan includes specifc actions to increase the number and proportion of staff and volunteers who are Aboriginal and ensure that our programs are meeting the cancer-related needs of Aboriginal people.

We know that we are only one very small part in the many factors that contribute to the cancer disparity for Aboriginal people, and we are conscious that we are only at the beginning of our journey of reconciliation. But in the words of one of our Yarn-Up Leaders “Everyone deserves the same level of health care and services in Australia, so this is our time to make a difference in tangibly closing the gap between Aboriginal and nonAboriginal people.” Early steps yes, but at least the journey has begun.