What advocates can learn from other patient communities

A photo with the health minister feels like progress. It usually isn’t. That was the opening line from Richard Vines, co-founder of Rare Cancers Australia, speaking on Advocates Day of the World Bladder Cancer Patient Forum 2026 in Hong Kong. What actually moves outcomes for patients, he told the room, is not the photo. It’s everything that happens around it.

Everyone in the room is already doing advocacy

Richard opened by pushing back on a common assumption: that advocacy is something only policy specialists do. If your organisation has ever asked a pharmaceutical company for compassionate access to a drug, asked a clinician about a clinical trial, or asked government for support, you’re already doing it. And whenever an organisation stands in front of a potential funder, a philanthropist, a business, a pharmaceutical company, and makes the case that it’s worth backing, that’s advocacy too.

Richard knows what that work can achieve. He and his wife started Rare Cancers Australia in 2012, literally from their kitchen table. It now has 38 staff and roughly AU$7 million in annual revenue, and it has done something genuinely rare for a patient organisation: changed government policy, more than once. Its advocacy helped shape Australia’s national Cancer Plan, funding a network of patient navigators and nurses now being rolled out across the country, and redirected roughly AU$500 million in research funding toward rare cancers and rare diseases. Its longest campaign, for pan-tumour access to immunotherapies regardless of whether a patient’s cancer is common or rare, took from 2017 to succeed, but Australia became the first country in the world to get there.

Why anyone listens to you in the first place

Richard’s answer: trust. Patient organisations start every conversation from a position civil servants and politicians don’t extend to a pharmaceutical company in the same room. His advice on using that credibility well:

• Own your expertise. Stop starting sentences with “I’m not an expert.” You are the expert in your own and your community’s lived experience of the disease, and that’s the expertise that matters here.
• Look as credible as you sound. A website full of smiling patient photos may feel warm, but it doesn’t always land the way you’d hope with the civil servants, clinicians and pharmaceutical contacts you’re trying to influence. Clean, professional and easy to navigate does more work.
• Build a medical advisory board. It doesn’t need to sit on your governing board, but being able to say “our medical advisers include Professor X and Dr Y” adds credibility instantly.
• Diversify your board. A board of patients and clinicians alone is a narrower base of influence than one that also includes a lawyer, a banker, an accountant, a communications specialist, or someone close to government.
• Stay calm, always. Frustration is real and understandable, but shouting, Richard admitted he’s been guilty of it too, makes people want to engage with you less, not more.

A simple three-part way to make the case

For any ask, Richard laid out a structure he’s used repeatedly with governments and funders:

1. Frame it as an opportunity, not a grievance. “It’s a disgrace that my patients don’t have access to X” puts people on the defensive. “We have a real opportunity to improve outcomes by funding X” opens a conversation.
2. Acknowledge their constraints. Governments also have to fund roads, hospitals and universities. Naming that builds the empathy that lets you shape the conversation, rather than compete against every other request on the same desk.
3. Make the solution plausible. Stay in your own lane of expertise, and borrow other people’s where you need to.

Richard closed by tying it back to Rare Cancers Australia’s own track record: focus every ask on patient benefit, address the real-world constraints honestly, remember the social and economic case alongside the health one, and build support from as many corners as possible. It’s slower than a photo opportunity. It’s also how policy actually changes.