A new campaign is being launched this week to highlight the stigma and lack of attention being directed towards New Zealand's biggest cancer killer.
Sixteen hundred Kiwis die from lung cancer each year, with 20 per cent of those non-smokers.
Hanmer Springs mother-of-two Kate Hodges was diagnosed with advanced cancer in June after discovering a small lump in her neck. She said cancer was the last thing she thought it might be.
She said the stigma attached to lung cancer as a self-inflicted smokers disease left her feeling she had to qualify her diagnosis to others.
"I found myself saying oh I've just been diagnosed with stage four lung cancer but I've never smoked. I always felt I had to add that sentence in,' she said.
Kate said she soon discovered lung cancer is a largely forgotten disease in terms of public support and awareness.
"It didn't take long for me to suddenly feel, oh why did I have to get that cancer, why couldn't I have had breast cancer or a different cancer with more public support, the Pink Ribbon or Movember-type cancer," she said.
Dunedin doctor John Ashton was also diagnosed with advanced lung cancer three-and-a-half years ago. Like Kate, he too had never smoked.
Both patients are ambassadors for the new Lung Foundation, which is holding a function at Parliament this week to raise awareness of lung cancer and lung health.
The aim is to reduce stigma surrounding the disease and advocate for better treatments, government funding and symptom awareness.
Dr Ashton said the fact he was a non-smoker actually delayed his diagnosis.
"I had a long chronic cough but the reason for it, lung cancer, wasn't really suspected until I had a chest x-ray for other reasons," he said.
John didn't respond to chemotherapy yet amazingly, he is alive and in remission three and a half years after his initial diagnosis, thanks to being given compassionate free access to one of the new breed of targeted cancer drugs not yet available here.
He is now so healthy he has just completed a 10km fun run to raise awareness for lung health.
Kate Hodges has also been given compassionate free access to a Swedish targeted drug also unavailable here called Osimertinib. She said at $16,000 per month it would be unaffordable if she had to pay for it herself.
"Certainly within a week I knew it was making a difference. In my mind I thought I could feel the lump shrinking," she said.
Lung Foundation Medical Director Dr Chris Atkinson said patients newly-diagnosed must explore all options with their medical team to see if the type of lung cancer they have might genetically respond to this new breed of targeted drugs.
"Ask whether there is a clinical trial that you might be eligible for or if there is anything available in Australia or somewhere else which you might be able to access on a compassionate basis," he said.
While reluctant to point the finger at Pharmac for not funding more targeted therapies, or at the pharmaceutical companies for making them so expensive, Dr Atkinson said more should be done at a government level to make newer drugs available, considering lung cancer kills more New Zealanders than any other.
"In health economic terms we've got to be a little bit faster I think in terms of looking at the worth and the effectiveness of these new therapies," he said.
Pharmac is currently considering funding Keytruda for lung cancer as well as melanoma, which, if given the green light, stands to help around 30 percent of patients with a particular genetic form of the disease. However no other new lung cancer drugs are on the horizon.
Kate Hodges said she wass keeping her hopes up Osimertinib will work for her and allow her time to help raise her family.
Her nine-year-old son Tom has recently helped raise $12,000 in the small Hanmer community for a Lung Busters fun run at the end of this month to help raise awareness of the disease and its symptoms.
Oncologists advise patients who have a persistent cough which won't go away, suffer shortness of breath or weight loss to see their GP and insist their symptoms are taken seriously.