ROB MacGregor is fighting to get government funding for a drug called Lutate to be subsidised for NSW residents.
After feeling sudden abdominal pain in December, the West Pennant Hills resident was diagnosed with a rare form of cancer known as neuroendocrine tumours (NETs).
He was given a 5 per cent chance of living another five years.
"I've chosen to think the figures don't apply to me," he said.
"The moment the doctor told me my diagnosis is very hazy in my memory. I think that's helping me to have positive thoughts about my outcome. I'm not considering not coming through."
Mr MacGregor, 44, said if the chemotherapy treatment is unsuccessful, he may need an alternative cancer treatment using the drug Lutate, which has been proven to reduce neuroendocrine tumours.
As a NSW resident he will need to pay $20,000 for the treatment.
There are about 3500 people in NSW diagnosed with NETs and about 200 of those will require Lutate as part of their treatment.
But the state government does not fund the $1.9 million required to subsidise the treatment, which has been proven to reduce the tumours.
In Victoria, Queensland, South Australia and Western Australian the treatment is subsidised.
"It seems absurd that we don't get the funding," Mr MacGregor said.
"And I can't go to other states to receive the treatment because they are overloaded."
In this type of cancer, slow growing tumours develop from secretory cells found throughout the body, particularly in the gastrointestinal system, lung, pancreas, ovary and testes.
Chemotherapy doesn't kill the cancer, but can reduce it or stops its growth.
"It's been a difficult time. I'm suffering lethargy, tiredness, nausea, loss of hair, loss of muscle and mixing that with doctors' appointments, chemo and the day-to-day dealings with people and work," he said.
His sister, Alison Mackey of Baulkham Hills, is calling for people to send a personal letter to NSW Minister for Health Jillian Skinner MP asking the government to consider funding for the treatment.
"NSW produces Lutate yet the citizens don't even have access to something the nation's only nuclear facility [the Australian Nuclear Science and Technology Organisation] is producing for the world," she said.
Doctor John Leyden, who founded the charity organisation The Unicorn Foundation, said until recently neuroendocrine tumours have been overlooked by the medical community.
‘‘They are rare by nature, manifest myriad clinical symptoms and are usually diagnosed late in their clinical course,’’ he said.
‘‘Such behaviour has created a culture of misunderstanding and non-treatment by physicians.’’
■ For more information about neuroendocrine tumours, visit the Unicorn Foundation.
■ To encourage people to help, Mr MacGregor and Mrs Mackey have written a template of the letter with all information to be sent to the Health Minister. See below:
To The Hon Jillian Skinner MP,
I am writing this letter to draw your attention to the urgent medical need of some of your NSW citizens. There is a very cancer that affects 2,500 NSW citizen called Neuroendocrine cancer (NET). One of those affected is a friend of mine, Robert MacGregor.
If chemo works the first round for NET patients, it usually doesn’t work the second time. Chemo doesn’t kill the cancer, but reduces it or stops it’s growth. Therefore, other alternative treatments are needed.
There is a drug at the moment called Lutate (lutetium-177) that has been proven to reduce NET. There are up to 200 patients each year in NSW that require Lutate. The cost is only $1.9 million to provide this treatment. Currently you, the NSW Government will not provide the funding.
Victorian, Queensland, South Australian & Western Australian State Governments all subsidise this treatment. NSW patients have to pay $20,000 per treatment.
Ironically ANSTO (www.ansto.gov.au/) is in May, about to be a major exporter of lutate (lutetium-177) to the world, with a large number of countries already placing orders; yet in NSW our citizens don’t even have access to something the nation’s only nuclear facility is producing for the world.
I am pleading with you to consider funding this treatment. This is a matter of life and death for many NSW citizens.
Please do what is right and what your Citizens request.
Post to: The Hon Jillian Skinner MP
Minister for Health
Minister for Medical Research
Level 31, Governor Macquarie Tower
1 Farrer Place, Sydney