- 2 years ago
10 November 2021
Simone Leyden is CEO and co-founder of patient group NeuroEndocrine Cancer Australia (NECA). She met Professor Rod Hicks, Director of the Centre for Molecular Imaging and Therapeutic Nuclear Medicine at the Peter MacCallum Cancer Centre in Melbourne, in 2009. Together, they have increased access and grown awareness globally of this deadly rare disease.
Simone: My sister Kate was diagnosed with pancreatic neuroendocrine cancer in 2005. My brother John is a doctor, so we set about looking into who could best treat her. We travelled all over the world but found the best care at Peter Mac in Melbourne.
Rod was my sister’s nuclear medicine specialist, but he took a personal perspective with my sister, as he does with all his patients. Rod goes far and beyond, spending a lot of time with patients and he built a beautiful rapport both with my sister and us as her family. He was there at the start of her treatment, and he was there at the end. He was instrumental in ensuring she had access to everything possible, and he did so with such care and compassion.
As an anaesthetist, my brother John was able to navigate the system. He applied to pharmaceutical companies to see if there were any drugs Kate could get on compassionate access, any clinical trials she could join, or treatments available overseas but we figured if we were struggling to find information and support, then other Australians would be too. Kate’s cancer was rare, but we didn’t think it could be so incredibly rare no one else was dealing with the same issues.
The specialists at Peter Mac suggested other patients needed help, so we set up what was then the Unicorn Foundation and is now NeuroEndocrine Cancer Australia. We launched the organisation in 2009, about four months before Kate passed away. It was really important to us that Kate was alive to see it started and know this would be her legacy.
Rod was on the Board from the early years. His incredible knowledge and pioneering spirit in getting treatments like PRRT (Peptide Receptor Radionuclide Therapy) to patients formed much of the foundation. In the early days, I was probably a bit in awe of Rod’s medical brain; his influence is massive, not just within NECA but across the theranostics space. We would travel to Europe and people would attend conferences just to see Rod, and I saw the high esteem they held him in. I was in awe of him back then, but I think the relationship has evolved. Now we have mutual respect and admiration for each other.
We’ve brought experts from around the world to Australia. We convened the Fourth World Theranostics Congress in 2016, which was an incredible experience working with Rod from a professional perspective. I did the sponsorships and relationships and he the medical scientific program, and together we put theranostics top of mind in Australia.
In 2018, we convened the Asia Pacific Neuroendocrine Tumour Society meeting, and we just hosted a National Theranostics Roundtable, bringing together different stakeholders to educate people, raise awareness, and ensure the innovation and science is matched by patient access.
Ours is really a perfect partnership. I look after business and marketing, and Rod takes care of the science. I come from an advertising and marketing background, and I think Rod would agree we’ve made the conferences a success because we have different skills.
It can be a bit of a lonely journey for people in nuclear medicine.
We recently had a 25-year celebration of PRRT at Peter Mac and Rod put a presentation together about what his patients had been able to achieve by having PRRT. Some had travelled, others walked their daughters down the aisle. They had been given so much good quality time, and for Rod to give a presentation about what could have been a celebration of his own achievements but to make it a presentation about his patients’ achievements is testament to Rod’s focus. He always puts the patient first.
Rod is very generous with his time; the amount of volunteering he does is extraordinary. He works not only for our organisation, he’s also an advisory member of the International Neuroendocrine Cancer Alliance (INCA), which is a patient organisation alliance. He is driven to make sure any new scientific breakthrough will get to the patients as soon as it possibly can.
Rod and I talk all the time, always looking at what else we could be working on. It’s always been such an easy relationship in that we come from the same perspective of wanting to maximise patient benefit. He’s our sounding board for all things medical. I can get quite emotional about this, but we feel as though we are family. I am close with his wife, Monique, and his daughter, Lauren, and of course there is beautiful personal friendship too.
Rod tells me as he steps back from clinical work, he will step up even more in NECA. This is a man who should be taking it a bit easier now and thinking about retiring, but he is even more enthused.
Rod: I’ve been involved in neuroendocrine tumour (NET) diagnosis and care for almost 30 years. Simone’s sister Kate was one of my patients. She was a really inspiring young woman: very intelligent, very driven, looking forward to getting married. She did what, I guess, self-actuating, self-achieving people do when diagnosed and went onto the internet to find the best information she could but found it very difficult to get.
The Leydens had the idea to establish the Unicorn Foundation and were keen to develop good information for NET patients, so I was very enthusiastic. There was not a lot of good information at that time and a lot of bad information, and my philosophy has always been good information is important, not only for your own patients, but for the broader community because a place like Peter Mac can’t see every patient.
Neuroendocrine cancer is a very complex disease. I’d been involved in getting this information out to the medical profession because it’s a relatively rare cause of common symptoms. What the Leydens did was translate this for the patients through a webpage, a NET nurse, and patient seminars. They were fantastic at it, getting experts to talk to patients and answer their questions.
The other area where they really took the lead, and where I tried to help, was in political advocacy, getting patients access to treatments that either weren’t yet available or weren’t reimbursed. The Leydens played a major role in getting a more accurate form of scanning.
In Victoria, we had a funding mechanism with the government for PRRT that wasn’t available in other States, so the Foundation lobbied State Governments and now we have centres in Brisbane, Sydney, Melbourne, South Australia and Western Australia. We even started treating patients from New Zealand, trained their staff and had a technology exchange so they now deliver PRRT in New Zealand with their national health department funding those treatments – before we even have Federal funding for PRRT here.
NECA is not only an advocacy group, but also a philanthropic group. It collects donations and applies for grants so we can support research, fund clinical trials, and develop databases. We set up a database for our patients to record their outcomes and test results before it was popular to do so. Simone said it would be great to have this on a national basis, so we worked with the University of Melbourne to develop a national database of NET patients called PLANET.
Because of the complexity of the disease and the number of different clinicians involved, the medical records were very piecemeal and our own data managers were finding it difficult to integrate all the information. I had an idea it would be great to make the patient their own data manager, entering information into their medical record, so we set up a mobile phone app that allowed them to record their symptoms and manage their own data.
Perhaps our greatest achievement in working together is getting Gallium-68 PET scanning funded. It’s now on the Medicare schedule and that’s been an incredibly important tool to improve the diagnosis and monitoring of NET patients. We even had a Theranostics Roundtable with politicians to continue the dialogue.
People ask, ‘How do you get all of those different groups together: industry players, government?’ Simone does it.
Simone is incredibly driven to achieve her goals. She’s very efficient. But more than that, she’s personable. She brings people together, makes them feel part of a common effort. She’s a great communicator and, because people like her, they’re drawn to her and her enthusiasm.
She’s not in any way confronting, even when she’s pushing very hard on behalf of patients. It’s not done in an aggressive way, it’s done in a gentle, caring sort of way. I think that’s why she’s so successful. She has diplomatic and interpersonal skills in spades.
Simone and I have gotten to know each other pretty well over time. First and foremost, we’re friends but for me it is underpinned by respect for her and what she’s doing, and a common passion for improving the outcomes in neuroendocrine cancer. To date, it’s been difficult for me to take too much of a political role. As the director of a large unit in a public hospital, there are certain constraints but I’m leaving Peter Mac early next year and will be freer to advocate with Simone for patients.
I don’t think you can underestimate the importance of patient advocacy in many of these funding decisions. Politicians don’t like listening to doctors. They like listening to people.