Elegant science fiction: Cancer advocate David Downs calls himself a 'genetically modified optimist' – Stuff.co.nz

Cancer survivor and comedian David Downs likes to jokingly call himself a genetically modified organism – or a GMO for short.
Sometimes, like in his 2019 Tedx talk about what resilience and hope really look like, he’ll add a comedic twist.
“I’m a GMO”, he says right at the end. “A genetically modified optimist.”
It’s funny, because it’s true.
Optimism spills out of Downs: imagine bubbles overflowing from champagne glass, buoying up everyone around him: the patients he advocates for; the donors he convinces to support cutting-edge research; the thousands of people who have read his book and columns.
Oh, and the genetically modified bit is true (enough) too.
Four years ago a bunch of genetically modified t-cells specifically designed to detect, hunt down and destroy cancer cells were circulating in his bloodstream.
Called CAR T-cell therapy, it’s a new and highly promising type of cancer treatment that essentially harnesses the patient’s own immune cells to fight cancer.
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T-cells, those warriors of the immune system, are harvested, modified in a lab, and then injected back into the patient where they multiply and set about finding and killing cancer cells.
In Downs’ case they were hunting a rare and aggressive type of non-Hodgkin’s lymphoma called double hit diffuse large B-cell lymphoma.
When he was diagnosed in 2017, aged 48, the tumour was the size of a basketball squished around his abdomen. It withstood 12 rounds and five different types of chemotherapy, shrinking from time to time but never disappearing.
A month after receiving his CAR T-cell therapy treatment as part of a Harvard University run trial at Massachusetts General Hospital in Boston, a scan revealed he was in remission.
Nearly four years later he remains cancer free.
“I’m physically great now”, he says. “No sign of cancer.”
Optimism levels? “Off the charts.”
As anyone who has navigated the world of cancer knows, the disease has its own confusing vocabulary: long and complicated drug names, scientific terms and endless acronyms that patients quickly become proficient in.
The full name for CAR T-cell therapy is chimeric antigen receptor therapy.
Downs has a more poetic take.
“The marriage of elegance and high science” is how he put it recently.
He is chatting from his home in Devonport during Auckland’s ongoing lockdown, occasionally tapping away at a keyboard, searching things and attending to business, while gracefully walking me through his cancer journey, a story that is already a book called A Mild Touch of Cancer and is now a documentary of the same name.
Directed by Annie Goldson it will screen at The New Zealand International Film Festival and on Sky Go and Prime.
The human body, enthuses Downs, has evolved over hundreds of millions of years to be really good at fighting disease and infection.
“You know, 99.999 per cent of stuff, our bodies will fix. We’re actually incredible.”
The problem with cancer is that it manages to evade some people’s immune system. So in one way CAR T-cell therapy is actually very simple: it just helps the immune system do its job by “turning the lights on something that it’s not noticing”.
“That’s what’s so beautiful and elegant about it”, says Downs.
“It sort of appeals to my sense of elegance. And then, on the other hand, it’s science fiction because you’re genetically modifying human being’s immune systems with some really advanced science.”
This advanced science is being trialled all over the world. In some countries, including Australia, America and the United Kingdom, CAR T is now licensed for routine use, mostly for blood cancers such as leukaemia and lymphoma which it seems most effective against, and usually only after patients have exhausted more traditional therapies.
Estimates suggest that globally around 10,000 patients have received CAR T-cell therapy and that number is quickly growing.
At the moment New Zealanders need to travel for treatment but excitingly the Malaghan Institute of Medical Research in Wellington have started their own trail which kicked off in September 2019.
It’s a stage one trial, meaning the focus is on safety, only open to 12 patients who have exhausted all other options.
The aim is to develop a third generation CAR T-cell therapy that is more effective and easier to deliver, in part by automating some of the process.
Kirsty Horgan is one of those 12 patients. Now a close friend of Downs, she also features in the doco.
The sun is shining through the windows of her Christchurch home making the whole room glow like a renaissance painting when she takes this video call, sitting at her kitchen table, patterned scarf around her head, smiling.
It’s been eight months since her own modified T-cells were given back to her and five since she got her positive results back.
She’s feeling good, spending time with her 11-year-old son Sam and slowly getting her health back after having a bad reaction to one of the infusions she received post CAR T.
“The days are pretty good”, she says laughing delightedly.
“It’s only really been a month since I got my health back from getting really sick. So days now are just filled with hanging out with my awesome dogs and my cat, looking for work and looking after my son and myself.”
Mostly the former legal secretary is enjoying life.
Nothing, she says, makes you aware “the way actually nearly dying does, that it’s not a dress rehearsal”.
Like Downs, Horgan was at the end of her treatment options when she got into the CAR T-cell trial last year. The pair are now friends, in touch regularly and she shares his tendency towards deliberate optimism.
“I made quite a definite decision… to embrace it whichever way it went”, she explains.
“To fight and laugh as often as possible and try to enjoy each day.”
Hers is a well-used laugh, deep, throaty and polished but the past few years have not been easy.
Horgan was diagnosed with lymphoma just a few months after her long term partner Mick died from cancer in June 2019.
The first sign was an abscess in her throat.
“I looked like a bullfrog actually, is how I liken it to. I had this big swollen neck. That was hugely unattractive. It was uncomfortable and I just started dropping weight.”
The diagnosis, double hit lymphoma, came on a Friday. She was in treatment the following Monday.
“Gruelling, gruelling, gruelling”, is how she describes the rounds of two different types of chemotherapy that unfortunately didn’t succeed in putting her lymphoma into remission.
When she was told it was the end of the road she “had quite a quite a wee tantrum really in my hematologists office, the poor thing”.
She told him: “We’re going to have to try to find something else.”
Getting onto the CAR T-cell therapy trial was amazing.
“I was at a space where I was trying to work out who was going to have Sam and where we were going to go and writing my will and all of those sorts of quite intense things. [The trail was], you know, a little crack of hope: a little door opening that gave me some hope.”
The Malaghan Institute trail is headed by its clinical director Dr Robert Weinkove.
Whereas Downs, who is an ambassador for the Institute, is just flat out excited about CAR T-cell therapy, Weinkove has a more measured clinicians take on things.
He points out that most cancers are actually cured by surgery and for soft cancers including blood cancers such as lymphoma, traditional treatments can work well.
“The therapeutic outcomes from frontline chemotherapy are very, very good for the majority of people.”
He sees CAR T eventually being used alongside other immune therapies, existing and in the pipeline, and constantly circles back with the reminder that this is a stage one trial focused on safety and we can’t draw any conclusions yet.
He points out that CAR T-cell therapy may have side effects, doesn’t work for everyone and at the moment only achieves results against certain kinds of cancer – although work is underway to look at this.
Here are the positives: there is a potential that CAR T-cells might remain in a patient’s blood for some time, guarding against relapse; it is a one dose treatment compared to numerous chemotherapy rounds and lengthy hospital stays, and, it could prove less toxic.
Downs for example experienced only mild flu symptoms following CAR T, describing it as a “walk in the park” compared to chemo.
“It’s not a silver bullet for everyone”, says Weinkove who estimates 50 to 200 New Zealanders could benefit from the treatment a year. “But I think it is very exciting.”
A slight aside: I asked Weinkove, who knows Downs and appreciates his humour, to weigh in on the GMO claim. He would good-naturedly like to point out that it’s illegal to genetically modify humans in New Zealand and also since his T-cells were modified in a lab outside his body and can’t reproduce, Downs doesn’t technically classify as a GMO.
Sorry David.
If Downs seems familiar to you it could be because he has been “pretty vocal” about his cancer, purposely putting himself out there.
You might have read his funny, informative columns about living with cancer on Stuff, or contributed to the Givealittle page a friend set up to help fund his $350,000 medical bill.
He funded the rest by cashing in insurances and borrowing money from the bank.
It’s a story of luck or perhaps about how speaking out creates connections which, in turn, boost luck’s chances.
It’s also a story of how to ask for help.
Downs got a place on the Boston trail because an American named Michael Corbo, a VP at Pfizer based in New York, read his column on Stuff, tracked him down on LinkedIn and offered to help.
“That was the magic.”
The pair were in touch regularly and Corbo literally sent Downs an email the day his doctor told him he was out of options.
“The thing that ultimately got me on the trial was some random guy, now a lovely friend, who just happened to reach out to me and say: ‘Do you need some help?’”
Downs said “yes” and found himself flying out of Auckland on Christmas Day 2017 with his wife Katherine and their three school-aged sons for a “last roll of the dice”, landing in Boston in the middle of a snowstorm and starting a medical trial at 8am the next day.
When he talks, Downs continually acknowledges his luck. He folds everything back into this and flips it back out by helping others. He wants to pay it forward
Before his diagnosis Downs worked for New Zealand Trade and Enterprise and just two months ago, after a stint of doing contract work, started a “super cool” new job as CEO at The New Zealand Story, a government funded organisation tasked with promoting New Zealand to the world.
“Coming into this new job I just said ‘look I can’t work full time because I just have this other part of me that I need to keep doing’.”
So now some of his week is dedicated to helping fellow cancer patients, chipping in with anything from offering support and encouragement to helping people with rarer diagnosis, who fall somewhat outside of the excellent existing health system: negotiating with drug companies for example or dealing with the logistics of overseas treatment.
He calls himself a patient advocate. You can tell it’s a calling.
People find him through official channels such as The Leukaemia and Blood Foundation or online, through Twitter or email – his address is listed openly on his website and he’ll get one or two calls a week.
Just like Horgan and the other cancer patients and their families on A Mild Touch of Cancer, he speaks out to help and give hope. Because cancer can be lonely and bleak.
“It’s wonderful to realise that there are these people in the world that like and feel great about helping other people”, says Downs. “It gives you a lot of confidence.”
“It’s kind of changed my perspective on making sure that people can ask and get help when they need it.”
A Mild Touch of Cancer will screen on Prime, October 19 at 8:30pm. It will then be available on Sky Go. It is also scheduled to screen at the New Zealand International Film Festival in November. See nziff.co.nz for details.
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