A rare type of cancer, neuroendocrine tumour is a slow growing cancer that has the potential to spread to different parts of the body. The cancer is known to trigger form secretory cells in various locations around the body, including the lungs, gastrointestinal tract, pancreas, ovaries and testes. Associated symptoms can include severe abdominal cramps, asthma attacks and once the cancer spreads without being detected early in its progression, the tumour does not typically respond to conventional treatment.
Given its rarity by nature, the cancer is often diagnosed late in its clinical course.
Where chemotherapy, radiotherapy, surgery or hormone treatment have failed to contain the tumour, neuroendocrine patients have the option to turn to an alternate cancer treatment using a drug called Lutate.
The drug works by using radioactive particles to target the tumour from the inside. The treatment has been observed to slow down the progression of the cancer in patients who did not respond to the treatment otherwise. Those receiving Lutate also demonstrated recovery good enough to allow them to return to work.
Unfortunately not every neuroendocrine cancer patient in Australia has access to this treatment option. In NSW the government has refused to fund the drug but in other areas like Victoria, Queensland, South Australia and Western Australia, the treatment is available to patients. Trying for funding to get the drug approved from the state and federal health departments has been challenging for NSW patients. Funding costs are estimated at $ 1.9 million for NSW that will allow the drug to become subsidised.
With Lutate unavailable in NSW, patients look for other treatment options which can span to expenses amounting to $20,000 for private treatment. Out of the 3500 patients diagnosed with neuroendocrine tumour, about 200 will need to rely on Lutate for their treatment.
Success stories of patients who have been lucky enough to receive treatment through Lutate show that the predicted lifespan for these patients is often more than was believed by their medical practitioners.
Patient advocate and an anaesthetist John Leyden is the founder of the Unicorn Foundation, a charity that has been trying to get funding for Lutate approved by various government bodies. Based on the foundation’s research Lutate has the potential to shrink the tumour in some patients while almost eliminating it in others. The drug has few known side effects and is used as an outpatient treatment. When administered early enough in the disease, Lutate can stall the growth the cancer while permitting patients to remain productive. This in turn lessens the demand for other costly medical treatments and procedures.
In NSW the drug is only available to patients who have undergone all other therapeutic options. By the time they do receive Lutate treatment, it is often too late in the progression of the disease for many individuals. As a result NSW patients experience the misfortune of missing out on timely Lutate treatment which could otherwise prevent premature death.
Others who do manage to receive treatment travel abroad to do so or move interstate within the country.
References:
1) No access to cancer relief drug lutate: http://www.hillsnews.com.au/story/843/no-access-to-cancer-relief-drug-lutate/
2) Lutate provides a breakthrough in treating rare cancer but treatment is struggling for finance: http://www.smh.com.au/national/health/lutate-provides-a-breakthrough-in-treating-rare-cancer-but-treatment-is-struggling-for-finance-20131214-2zdya.html
3) New South Wales Health Ministry denies funding for ‘miracle’ cancer treatment: http://www.smh.com.au/national/health/new-south-wales-health-ministry-denies-funding-for-miracle-cancer-treatment-20131214-2ze3r.html
4) Peptide Receptor Radionuclide therapy – “LUTATE” for patients with neuroendocrine cancer (NETs): http://www.unicornfoundation.org.au/library/document//lutate_brief_for_patients.pdf