​​It is with great sadness that we write to let you know that Malcolm Legget, one of the driving forces in securing better treatment for people with Neuroendocrine cancer in Aotearoa New Zealand, has died.

We at Neuroendocrine Cancer NZ are heartbroken but thankful we have been able to share the past 13 years with Malcolm.

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Malcolm was one of New Zealand’s foremost cardiologists and made his name through his work, his research and his tireless voluntary efforts promoting heart health. He was a consultant at Green Lane and Auckland City Hospitals, a consultant and board member of the Heart Group, and an Associate Professor at the University of Auckland.

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But in 2011, Malcolm found himself at the centre of his own medical diagnosis. He always remembered the date and time that he went to his GP for upper abdominal pain, fatigue and irritable bowel symptoms. He was diagnosed with a pancreatic neuroendocrine tumour with metastases in his liver. He remembered calling his wife, Carrie, and thinking “how am I going to tell the kids?”

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There began the work that would anchor his next thirteen years. He worked to stay alive. He wanted to be part of the life of his family, his three children, friends and this community. He wanted to keep working, experience the joy of life and be with people. He sought out treatments wherever he could. And for us in the neuroendocrine cancer community he began to work for a better outcome for people with NETs. Malcolm was fortunately able to travel to Australia but with NET scans costing $3,000 and treatment more than $50,000 he resolved to fight for access for all New Zealanders.

​He recognised the need to advance medical knowledge of NETs in NZ. Malcolm founded the Translational Medicine Trust and was the first Chair helping raise an initial $2 million to start the programme and bring leading NET specialist Dr Ben Lawrence home from the US. With more donations, the Trust established the NETwork! Project for neuroendocrine cancer research. It has now published more than 30 peer-reviewed papers, employed 20 people and is regarded as world-class.

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He formed a friendship with Siobhan Conroy who had established Unicorn Foundation NZ in 2012 (today Neuroendocrine Cancer New Zealand). He joined the Board in 2014, acting as Chair during a key phase through to 2019, and then stayed on as a Trustee.

In 2015 they spearheaded efforts to raise funds for a Gallium-68 generator. Alongside family and friends, he rode the length of the country and encouraged donors. The first Gallium NET scan was established at Mercy Radiology and since then, every NET patient needing this scan has been able to receive one. It has also been used to help thousands of prostate cancer patients.

From 2016, Siobhan, Malcolm and NECNZ turned to the problem of getting access to Peptide Receptor Radionuclide Therapy (PRRT). They wrote a full Pharmac funding application - no small task - created a petition and delivered 2000 signed letters from patients to Pharmac on the steps of Parliament. It worked. Pharmac and the Ministry of Health approved the treatment in 2017 but delays in setting up the service led to more hard lobbying that eventually saw the Ministry of Health approve funding for 30 patients a year to travel to Melbourne for PRRT at the Peter MacCallum Cancer Centre.

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COVID border closures were the catalyst for Auckland City Hospital to establish a PRRT service for New Zealand. The first patients were treated in September 2020, and the service was officially launched in July 2021. This was the first new national cancer treatment service launched in New Zealand for many years. Malcolm was in the auditorium for the Ministerial launch, and later experienced the treatment first hand.

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NETs treatment in New Zealand has been transformed thanks to Malcolm’s boundless energy, determination to get things done and his skills in networking. He and his wife Carrie have a huge network and convinced them to help. He talked people into cycling New Zealand, running marathons or donating to the cause. And they did, out of respect for Malcolm and to help his community.

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Malcolm was respected by patients for his wide knowledge and experience of NETs treatments - knowledge that he generously shared with many members of our community. He championed the NECNZ hardship fund, which has seen more than 40 patients receive a helping hand to assist with costs of undergoing treatment. 

 

And on top of all this, he was a kind and generous person. He laughed easily. He was funny. Malcolm loved reading and wrote poetry and short stories. He even has several songs on Spotify, as Malcolm and the Murmurs. https://open.spotify.com/artist/21oDdOibGdjLAHSgM1ghAC

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In one song, Clouds Inside my Head, he sang:

“Even in the dark we’re still moving forward

Even in the rain we will carry the sword

Following you where no others tread

To clear those clouds inside my head”

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He had the unstinting support of Carrie and his children Harry, George and Emelia. Often the whole family was involved in fundraising, with Harry and Emelia running the Auckland and Queenstown marathons this month to raise funds that Malcolm wanted used for NECNZ’s hardship fund and to expand our network of NET nurses.

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Malcolm was always determined to do his best to live and live well. But over the last few weeks his health faltered. On Friday evening, Malcolm passed away peacefully surrounded by his family.

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Arohanui Malcolm. Thank you for all you have done and for the legacy you leave behind. You will be missed

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Read the NZ Herald obituary here: Associate Professor Dr Malcolm Legget - 'No Ordinary New Zealander'

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