- 2 years ago
29 September 2021
Richard and Kate Vines founded Rare Cancers Australia in 2012. Kate lives with a rare cancer and the couple have dedicated their lives to caring and advocating for cancer patients. As CanForum 2021 approaches, the Vines tell of how they met and how this extraordinary partnership works to improve the lives of thousands of Australian patients.
Kate: I was diagnosed with medullary thyroid cancer, a rare cancer, in July 1991. My doctor said, ‘I’ve never seen this before and I don’t know how to treat it.’ It was before Dr Google.
I’ve never been in remission, but I’ve been fortunate that, at times, the cancer has been very slow growing. In those times I live a normal life but when it rears its head, I have to take time out.
I met Richard in 2001 while I was in my early forties at a dinner arranged by an introductory agency. I’d moved to Melbourne to set up a business promoting inspirational authors and speakers after being out of work for 10 years due to my health. I wanted to get back into it.
There were four other people at that dinner but they didn’t get much of a look in! We connected straight away – he’s such a likeable man and was just so easy to talk to. I’m a very open and honest person and I told him straight away I had cancer and didn’t expect a long life. It is such a credit to Richard that he was brave enough after what he went through (his second wife died of breast cancer in 1991) to take on another woman with cancer.
Richard is open to doing whatever we need to do to get me through. He’s been the most unbelievable support every step of the way. These dating organisations give you a list of the sort of person you’d like to meet and he was the complete opposite to anything I put down. I’m a detail person. I like to plan and organise and I’m very structured about what I do, whereas Richard is a big-picture person. He is able to take really complex ideas and distil them into very simple messages and solutions. This has enabled us to do some amazing stuff with Rare Cancers.
He is also an amazingly compassionate person. We’re both very passionate people and not fearful at all. When we decide to do something, we give it 100 per cent. It was my oncologist who suggested creating an organisation such as Rare Cancers Australia and we discussed it but felt we didn’t have the necessary experience, so we let it go.
Richard took a job as CEO of another charity in the health sector and we moved to Sydney but he soon realised he had more knowledge in this area than we initially thought. He left that organisation and said, ‘Look, if you ever want to start this charity, now’s a good time.’ That was 2012. We had it up and running within a week.
Every penny we had was put into RCA to get it up and running. We chose to make it our full-time job. 2014 was the turning point. Richard had written a report called, ‘Just a little more time’ that gave all the statistics about what a huge problem rare and less common cancers were in Australia. People believed rare cancers only affected a small patient population and were not a big problem, but when you combined them, they made up 30 per cent of all cancer diagnoses and 50 per cent of cancer mortalities. When we launched that report in Parliament House, Richard changed the conversation in one day.
It’s an incredibly difficult job to run a cancer charity. The things we didn’t think would be useful have helped us enormously. As well as the experience of cancer, you need the skills to run an organisation – the marketing, the events, the advocacy. We were fortunate that together we had this really eclectic combination of work skills.
For me, our most important achievement is that people are still alive today because of the work we’ve done. Also, that we have been able to support families. We’ve had carers that have contacted us after their loved one died and said, you know, the most important thing was feeling there was someone there who cared about them, who was listening and advocating on their behalf, someone who gave them hope.
I relax by getting into the garden. Getting my hands in the dirt, watching things grow is the most amazing stress-reliever. And I love doing tapestries – I’ve done one for each of the grandkids. That, too, is a great way of switching off, but Richard doesn’t switch off. He goes 24/7. We go for walks together but we still talk work.
Richard: Kate and I met at dinner in 2001. It was organised by an introductory agency in the days before online dating. It was the first and last time that either of us went to one, so it was very successful.
Kate announced over dinner that she had cancer and didn’t have a terribly long life expectancy. My previous wife died in 1991 from cancer so it was a bit of a ‘holy shit’ moment, but you can’t choose. You think, if we are right for each other and have three years together, then they will be three terrific years.
Kate was beautiful and smart. She was running an organisation promoting motivational speakers, trying to do something really constructive, to get on with her life. She’d been living with a cancer diagnosis for 10 years and it was really inspirational. She was bringing two speakers out from the US and had booked the Sydney Entertainment Centre.
This is one woman trying to do this all on her own. Not many people are ballsy enough to have a crack at something like that. I was working in IT, running the sales team of a software company. I’d started life as a software developer and eventually moved into sales as I realised nobody else was going to sell my stuff for me.
I’d started product-specific software companies in the past, but RCA was different. It is a living, breathing thing that will outlive its founders.
I’ve always been interested in politics and government so we agreed very early on that Kate would provide support to patients and I would advocate to the government to build a better, fairer system for rare cancer patients. We say Kate looks after today’s patients and I look after tomorrow’s.
In a sense, Kate is fearless. We were at a conference in Singapore and needed a particular drug from a particular pharmaceutical company for a lady in Melbourne who was dying. A woman came over and introduced herself as Global Medical Director for that company. I said hello and thought she would be a useful contact. I turn around and Kate has almost got her against the wall, telling her that we needed that drug and we needed it now.
The lady got her medicine and lived another three years. Her children married, she became a grandmother. I might have written a stern letter but Kate made it happen.
Kate’s compassion and her ability to love and care for people, her willingness to fight for other people defines our relationship in many respects. Kate has an enormous amount of belief in the people around her, particularly me. Everybody benefits from someone around them who believes in them, especially when you’re trying to effect change.
In some instances, we’re working in five to 10-year time frames, and some of the early campaigning is only now bearing fruit. It’s such a long process. In our health system, rare conditions and small-patient populations are often disadvantaged. There might be two people, one diagnosed with melanoma, one with salivary-gland cancer: same age, same doctor, same prescribed medicine. One gets it for free and one pays $10,000 a month. There’s a rationale behind this but it’s just too rigid.
It’s a Catch-22 situation. You ask the government why the salivary-gland patients can’t have it and they say, well, we’ve never had an application from the company. You go to the company and they say, the patient population is too small for us to credibly and commercially conduct trials. The system discourages, almost prevents, applications being made. To change that you need to take on massive organisations.
People are sometimes amazed that couples can live and work together. It works if you have complementary skills, as we do. People also talk about work /life balance. I call it work/sleep balance. It’s intense, it consumes you. Kate pushes me out into the garden but it’s not my natural habitat.
Creating and running Rare Cancers Australia was and is challenging but it would have been impossible to do it without each other.
©MedNews 2021