Hundreds of Māori living with lung cancer are being urged by health experts to contact their doctors to be tested for a rare form of the disease.
Lung Foundation New Zealand chief executive Philip Hope says a new drug Alectinib is going to be available for those with the rare form of lung cancer, ALK mutation, from December 1 at no cost.
Hope says the drug will give patients a better quality of life in comparison with the previous option of chemotherapy.
“I don't think that [patients] are aware that there are options out there, where they can live well for a number of years if they get access to these treatments,” he says.
District Health Boards
Hope says patients in the past have missed out on the free medicine because of a variation in how District Health Boards are testing for the cancer.
While every DHB has access to the technology needed to screen lung cancer patients for the gene mutation which causes ALK+ NSCLC, there are no standards in place to ensure this happens, he says.
“Molecular testing for biomarkers in lung cancer, which is the most targeted cancer in terms of treatment, that’s been around for more than three years. There’s been a standard of care signed off by the Ministry. The problem that we’ve had is those standards haven’t been adhered to consistently across the DHBs.”
He says the primary reason standards have not been adhered to is because Pharmac has not funded the treatments.
“For a lot of the DHBs there are extra costs in testing and so for a lot of them, it’s around about managing costs. From our perspective as a patient advocacy group, patients have a right to know if they’re suited to a type of treatment irrespective if it’s funded or not funded in the public health system.”
Māori and lung cancer
According to the latest figures from the Ministry of Health, around 445 Māori per year are diagnosed with lung cancer. Lung cancer also makes up 18 percent of all new cancer cases among Māori.
"Māori are missing out because...the incidents in mortality rates for [Māori] men is three times the general population. Māori women is about the lead unfortunately in incidents and mortality for lung cancer worldwide."
Hope says Māori are high expressers of the ALK biomarker.
“What we haven't been doing is that we haven't been engaging with Māori in a culturally appropriate way on how to encourage them to have that tumour tested.”
Hope says Māori living in rural areas are less likely to access support because they are required to travel to DHBs out of town.
Stigma
There’s also a stigma stopping Māori people from speaking up about having lung cancer because of the misconception that smoking is the only cause of it.
“About 20 percent of lung cancer patients today have never smoked. They have a genetic redisposition to get lung cancer. We don’t know why. There’s still being research done on that, says Hope.
“But what we do know is lung damage is cumulative over a lifetime. So if you work in an industry, for example, transport where you’re breathing in diesel fumes every day you’re going to be at risk.”
Hope is starting a pilot programme in Tairawhiti, a region most affected by the cancer.
He wants more support from the government to create services and programmes to educate Māori about lung cancer.
“I think the Government when we are talking about Māori they have to honour the Treaty of Waitangi. I think Māori have been hugely disadvantaged with lung disease, like lung cancer, there's a lot more that could be done.”