• David Downs

Down With Cancer

Self-titled 'genetically modified organism' David Downs talks to Heather Barker Vermeer about facing life and loss, and bringing the overseas treatment that saved him, here to New Zealand...

There’s a light in David Downs’s eyes that I swear seems to burn more brightly these days. 

I met David several years ago, through The Vic in Devonport, where he is trustee and treasurer. He was a larger than life character back then; loomingly tall and well-built, with a ready smile, he was big user of arms gestures and had a powrful voice full of presence as he addressed a fundraising meeting in the theatre auditorium. Scroll through to last summer, when I met David again. This time at another fundraiser, for St Leo’s School at McHughs’ in Cheltenham. I had no knowledge of the health challenge he had been facing in the intervening time. His face was as pale as the bleached table cloth in the midday sun. He was slight, weak and nonetheless jovial, but tired. 

I then began to read about his, for want of a less well-used phrase, ‘cancer journey’ through his blogs shared by Stuff. Blogs that, between then and my meeting him last month, would prove to save his life. 

Staring down the barrel of a diagnosis that turned a seemingly persistent cold into a death sentence, David chose to accept his mission. The author of five books, radio & TV presenter, comedy performer, husband and father-of-two, has, according to his web profile as GM at NZ Trade & Enterprise, ‘a passion for working with companies that will help propel New Zealand into a position of world-leading innovation and success.’ So, it was written in the stars, and on his CV, that he would tackle cancer in an innovative, and ultimately successful, way. 

Two years ago David was told he had cancer. Two days later, he was having chemotherapy. “Then one year ago, I was told I had run out of options here in New Zealand. It was a horrendous experience.”  

David’s always frank, and often funny blog, entitled 'A Mild Touch of the Cancer...' with many and varied subheadings, charted his experience of discovering he had cancer, then terminal-in-NZ cancer. It attracted readers from around the world; over 120,000 people followed his journey. One reader was Michael Corbo, Head of Immunology for pharmaceutical giant Pfizer. “He reached out to me and he put me in touch with some people at Harvard. 48 hours later, I’d been signed up for clinical trials. It was a surreal and amazing experience.” 

David’s doctor at home had told him he couldn’t get onto the trial. “I had the pleasure of saying to the doctors in New Zealand, ‘Ok, so I’ve met this guy on the internet who says he can help me’. I’m sure that didn’t sound at all dubious,” he smiles. 

When the penny - or over $1 million - dropped on the reality of the cost of this shot at life, David’s immediate reaction was to sell the family home in Cheltenham, where he has lived for over 14 years with his wife Katherine and their three sons. “We thought we had no choice and I would have pushed straight ahead with that.” However, a group of friends had other ideas. Long-time buddy Bob Pinchen set up a Give-a-little page that got the ball rolling and it quickly gathered pace. 

“The Give-A-Little page was excruciatingly embarrassing,” cringes David. “But there was nothing I could do about it! It seems the person being fundraised for has absolutely no say in the matter!” 

But the grimace soon turned to gratitude as the dollars began to descend. The Viaduct Events Centre was filled with over 400 people paying to see North Shore comedian friends Paul Ego and Michelle A’Court, Jeremy Corbett, Dai Henwood and others put on a massive comedy performance to raise funds. Online donations were landing from near and far. David was astounded by the support.

“We suddenly had $200,000 and that was enough to get us started. We put a deposit down with the hospital and I could start the trials.”

David’s life was saved by CAR T-cell therapy, which he was given as part of the clinical trial out of Boston earlier this year. CAR T-cell therapy is a type of cancer immunotherapy, which was in the news last month after two pioneers of the treatment were awarded the Nobel Prize for their work. Immunotherapy harnesses the body’s own immune system to fight cancer, and is recognised as opening a new frontier for cancer treatment.

“The impact of the treatment was much less than chemo. I was lucky that everything went like clockwork and, though the $350,000 that it ended up costing was hardly a bargain, it was far less than the $1 million that had been predicted.” 

You can see events as obstacles or opportunities, says David, and credits his positive personality on his upbringing and the character of both his parents. In his darkest moments, David turned to his laptop. “Even on the worst of days, when I was feeling like shit, I could still write my column. I could still put my ideas and voice out into the world to hopefully help others. This was helping me to keep myself being me, and not a victim. I had to keep that sense of what I could control. I wrote to help others and it ended up saving my life.”

He also benefited from plenty of creative escapism. “I had to be in hospital for weeks and weeks, in isolation, so we (David and his family) came up with this idea of dressing up the room in different themes, different countries…so we had France, Vietnam, all sorts! You can’t choose your room, but you can choose your attitude.” 

Now, he’s got the backs of other cancer patients. “I learnt a lot about the medical system throughout it all, and I am pleased to be able to help others who are going through that journey now.”

One way in which he is doing this is by becoming Ambassador for The Malaghan Institute, New Zealand’s leading independent biomedical research institute, which is bringing CAR T-cell therapy here. The Institute is preparing for early phase clinical trials of a new generation of the treatment next year. 

The $1 million David is aiming to raise (he whispers that he's really aiming for $2 million) will go to the Institute’s research programme and the trials, which will treat a small number of patients who are otherwise facing palliative care. Long-term, the Institute’s aim is to provide New Zealanders with early access to potentially life-saving treatment.

And they could have no-one better placed, or more passionate, about brining these life-saving trials and treatments to our shores. 

“The treatment is now being used for blood cancers but they are trying to use similar treatment for other cancers such as breast cancer, pancreatic cancer and many more,” explains David. Legal processes are underway and Med-Safe approval has been sought. Funding is now needed to carry out these trials here in New Zealand, which David sees as a potential world leader in this area with The Malaghan Institute’s credibility, technology and expertise providing a perfect foundation for success. 

A visible sadness washes over David, however, as he shares a very recent conversation with a fellow Kiwi who’d got in touch after reading his blogs. “Yesterday, I met someone who has three to four weeks to live. He can’t get over to the USA for treatment, because he has been told he cannot fly the distance. It was a very emotional meeting. 

“I have to work harder to get this treatment here in New Zealand. If the treatment I received was available here, this man would live.”

David gave his second Ted Talk this spring in Auckland - a rare return invitation to speak at the TedX event. Following a presentation on Kiwi innovation previously, he spoke on tackling the cancer journey with positivity. He is also working on his sixth book - based on a compilation of his Stuff articles. He has also teamed up with old friend and local comedian, Willy de Wit, who suffered a stroke the year after David was diagnosed with cancer. “Willy was really sick, and I was terminally ill with cancer. We said at the time, if we get better, we have to do a show about this!” The pair will perform ‘a comedy about mortality’ at The Vic on December 8th. 

“It’s great that I can give back in such a tangible way.”  

If you’d like to support David’s mission, please email him at david@downwithcancer.nz or visit the website www.downwithcancer.nz