An oncologist is urging hundreds of Kiwi lung cancer patients to contact their doctor to ensure they are screened for a rare form of the disease, which can now be treated for free, under a new initiative.
Patients who are diagnosed with the lung condition, in which a chromosomal rearrangement (ALK) causes lung cells to mutate and eventually spread throughout the body, can now have free access to a medicine, which has been shown to decrease the risk of disease progression or death by 53 percent when compared to the previous standard of care .
Associate Professor Chris Atkinson, oncologist and medical director of Lung Foundation NZ is calling for the introduction of national guidelines across DHBs to ensure all those living with advanced ALK-positive non-small cell lung cancer (ALK+ mNSCLC) are diagnosed and can access a potentially life-extending medication which has become available in New Zealand.
According to the latest annual figures from the Ministry of Health more than 2,226 Kiwis were diagnosed with lung cancer  and almost 1800 died . Non-small-cell lung cancer is the most common form of the disease and makes up about 85 percent of all lung cancers4.
Internationally, an estimated 4-5% percent of people with mNSCLC have a change in the anaplastic lymphoma kinase (ALK) gene  which results in an abnormal protein causing cancer to grow and spread to other parts of the body.
However, a recent study published by Auckland oncologists and health researchers found the incidence in their sample population was almost twice as high - with 8% of New Zealand patients diagnosed with non-squamous mNSCLC having the ALK-positive mutation ,.
The local research also found that those treated with an ALK tyrosine kinase inhibitor (TKI) survived markedly longer than those without this class of medicine (a median of 5.12 years vs 0.55 years) .
Unlike other forms of lung cancer, ALK+ mNSCLC is most commonly diagnosed in people with a light or non-smoking history .
Women are more likely to be diagnosed with this form of the disease than men5 and; prevalence is also higher among Maori, Pasifika and Asian ethnic groups than NZ Europeans6. Lung cancer patients with the ALK gene rearrangement also tend to be younger than most other mNSCLC patients, with a median age of approximately 52 years .
Associate Professor Atkinson says there is a significant variation in the testing standards of DHBs when it comes to screening for lung cancer and as a result, dozens of Kiwis may be living with ALK+ mNSCLC unaware they have this form of the disease or that there is a new, free treatment programme available to them .
He says whilst every DHB has access to the technology needed to screen lung cancer patients for the gene mutation which causes ALK+ mNSCLC, there are currently no standards in place to ensure this happens.
“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.
“Unfortunately this is another tragic and unnecessary example of how the health outcomes of cancer patients will vary dramatically according to their postcode,” he says.
Lung Foundation NZ, chief executive, Philip Hope says every patient living with advanced non-squamous non small cell lung cancer who has not already been screened for ALK+ mNSCLC should contact their doctor about being retrospectively tested.
He says patients may require a second test of their lung tissue, which can be a painful and uncomfortable procedure for someone already living with a terminal illness.
Any New Zealander who has been diagnosed with non-squamous non-small-cell lung cancer should immediately check with their doctor to see if they need to be screened for ALK+ mNSCLC.
If the ALK mutation is found, their specialist can then ensure they receive the free treatment option,” says Hope.
He says due to the variation in testing rates across the country, there could be more than 50 Kiwis diagnosed with advanced lung cancer who are unaware they have the ALK+ mutation .
Under a new initiative from pharmaceutical company Roche, Kiwis who have been diagnosed with ALK+ mNSCLC can access a new medicine Alecensa (alectinib) at no cost prior to PHARMAC funding the medicine.
The programme, estimated to save each patient tens of thousands of dollars, is significant as it removes cost as a barrier to accessing the latest generation medicine for this condition.
Alecensa is a second-generation tyrosine kinase inhibitor that targets the ALK cancer protein, preventing signalling within cells to inhibit their growth and survival.
Trial data of Alecensa has shown it to stop patients’ ALK+ lung cancer progressing for a median time of almost three years, which is more than three times longer than crizotinib, the previous standard of care for ALK+ mNSCLC . Treatment with the medicine also resulted in a higher number of complete or partial responses and significantly decreased the risk of progression or death by 53% compared with the previous standard of care .
Unlike current treatments, the medicine is also able to penetrate the blood-brain barrier, which is important as this type of cancer commonly spreads to the brain if left untreated ,.