Lives are being needlessly cut short because there's no universal testing for a type of lung cancer mutation, cancer patient advocates say.
About eight percent of advanced lung cancer patients have the ALK+NSCLC mutation, and oncologists say drugs available from December can help those people live up to five years longer - but most district health boards are not testing for it.
Lung Foundation NZ medical director Chris Atkinson, an oncologist, wants national guidelines across DHBs to ensure people with the mutation are diagnosed and can access the life-saving medication.
"With no national testing guidelines in place, many Kiwis living with this form of lung cancer have effectively been denied immediate access to a free treatment that could prolong their life."
Christchurch Hospital respiratory physician Dr Greg Frazer said the testing for ALK was not routine across DHBs because of a perception that without funded treatment there was no point in testing.
"The ongoing issue now is ensuring that people get tested so that we know how many people potentially can be treated and to get projections for how many people may be treated going forward."
University of Otago associate professor of preventative medicine Sue Crengle, from Ngāi Tahu, Kāti Mamoe and Waitaha, is part of a team trying to set up a lung cancer screening pilot in New Zealand.
She said overseas trials of lung cancer screening have shown a large decrease in mortality, especially for women.
"The problem with lung cancer is that at the moment it's really diagnosed quite late but with the advances in treatments that have come over recent years as well we know that if we can catch lung cancer at an early stage, it is curable."
It is early days for the pilot, with the team still in the planning stage, but Dr Crengle said the pilot would include an equal number of Māori and non-Māori.
"None of the adult screening programmes - breast cancer, cervical cancer, bowel screening - none of them are equitable in their reach to the Māori population, there are inequities in Māori participation in all of those programmes - we cannot have that with lung cancer screening."
During research interviews with whānau Māori, Dr Crengle said most assumed that a lung cancer diagnosis was a death sentence, but were receptive to getting tested once she explained there was treatment available.
She said the health sector needed to do more to show that cancer could be beaten.
"My father died of lung cancer. His lung cancer was diagnosed because it had spread into his brain," she said.
"I think many, many, many of us have got stories where we've got whānau members or friends who have had lung cancer but their diagnosis was made too late so because that's our experience, in the health sector I don't think we've been very good at getting up-to-date information about that out to people. That it is not a death sentence if it is picked up early."
Anyone with a chronic cough that has lasted longer than six weeks, or a new cough, should ask their doctor to be tested for lung cancer, Dr Crengle said.