Monday morning started like any other ‘average’ weekday; green tea, breakfast, puppy cuddles and settling down in to my ‘To Do List’ for the week. As I sat in my office planning and responding to emails, I was blissfully unaware of the events that would map out my day.
I’d been having various email discussions about a statement I had provided to the Minister of Health’s office when all of a sudden I was asked whether I minded if the Prime Minister could have my phone number, “he wants to have a chat with you”, I was informed.
The Prime Minister of Australia!!!
My response was “Oh dear”, hahahaha followed by a quick succession of…“Of course”.
It’s not every day that the PM of the country wants to have a chat… thank goodness he couldn’t see that I was decked out in my exercise clothes, something I am sure my Adidas-loving husband would have been proud of. One feels like they need to dress up for these sorts of occasions, even when the recipient can’t see you!
But I didn’t have time to scrub up, as the wait wasn’t long and the phone began buzzing. I half expected that I would answer to a lovely Advisor and be transferred to Mr Turnbull… no! He phoned me directly himself. Directly people!!!
A little shocked I said, “Hello Malcolm Turnbull”, I laughed and face palmed myself (“Duh” screaming in my mind… “nice one Kath”!) and graciously I could tell he smiled on the other end of the line as we launched in to our call, nerves quickly set aside and an easy flow of conversation ensued.
Speaking with politicians is not something that is unfamiliar for me, I spent many years in the early days of my career working at the Supreme Court in Brisbane liaising with dignitaries and organizing esteemed events. Years dealing with ministerials followed. Yet it has been the last three years where I have had the opportunity to meet, correspond and discuss important health issues with some of our country’s leaders that really has overshadowed the early introduction I had to this world of political and legal decision-making. But it doesn’t get any less nerve-wracking, I can assure you!
Mr Turnbull was pleasant, gracious and caring in his conversation with me. His staff, along with himself and taken the time to look in to my story and share a real concern and understanding for the disease that I, and many Australians have unfortunately had to live with in our lives. The importance of quality of life while on treatment and beyond for a patient was a real focus of our conversation, and during his allotted Question Time in Parliament on Monday (17 October 2016) following the Medicare question raised by Opposition Leader Bill Shorten, I am humbly grateful that Mr Turnbull pushed this point home expressing the point through my ‘real life’ experience and comments that I personally shared with him while being on compassionate access treatment. One I know that many other melanoma patients who had the opportunity to access immunotherapy drug “Keytruda” and who like myself are in a stable or ‘no evidence of disease’ position would agree.
MR SHORTEN (Maribyrnong—Leader of the Opposition) (14:09): My question is to the Prime Minister. On the day before the election, the Prime Minister was asked by Sam Armytage on Sunrise: You have however committed to a freeze on the GP rebate. Can you guarantee our viewers will pay – will not pay more to see the doctor due to this freeze? The Prime Minister responded: Sam absolutely … Does the Prime Minister stand by his absolute guarantee that Australians will not pay more to see the doctor as a result of his freeze?
MR TURNBULL (Wentworth—Prime Minister) (14:09): I thank the honourable member for his question and the opportunity to remind honourable members that we are delivering increases in Medicare funding every year and we are seeing record levels of GP bulk-billing, meaning most Australians are not paying to see the GP or for the tests they need. We are driving the costs of medicines down through our price disclosure policy in the Sixth community pharmacy agreement. In our first three years, we listed nearly 1,000 new medicines—three times as many as those opposite in their last three years in government. Earlier today I was fortunate to speak to Kathy Gardiner. Kathy Gardiner started battling melanoma at the age of 25. She lives in Brisbane. Three days before her 33rd birthday she was given the devastating news that her melanoma had progressed to a terminal stage of advanced metastatic melanoma, a disease which claims 1,500 Australian lives every year. In 2014, there was a groundbreaking immunotherapy treatment for advanced melanoma, now known as Keytruda, to which she was granted early compassionate access. She was a strong advocate for the listing of the drug on the PBS so that all people with advanced melanoma could access it, which at the time was costing $150,000 per treatment. Keytruda was listed by our government on the PBS in September 2015, and—thanks to our prudent management of the public finances of this country and our prudent management of our health spending—it can be accessed at a cost of $6.20 for concessional patients or $38.30 for general patients. Kathy told me that from October 2015 and right now she has a ‘no evidence of disease’ result. Nearly a year has elapsed since then, so she is filled with hope. She continues to fight the prognosis and she takes every day as it comes. But she said to me that this drug provided her with a quality of life with minimal side effects—something that many drugs are unable to provide a patient, particularly for advanced stage cancer. Now when we are chastised by the opposition for our management of the health budget, I would ask them to think of Kathy Gardiner and her quality of life and her recovery, because it was our management of health that made it possible. (Time expired)
MR SHORTEN I seek to table the absolute guarantee the Prime Minister gave before the election, which he will not do now. Leave not granted.
Transcript – p.48 from Hansard, Parliament Question Time – Topic: Medicare – Monday, 17 October 2016 and live broadcast on ABC.
As a patient advocate, it’s not the debates or the political scuffles that I focus on, but rather action, understanding and movement in a space that ensures patients are afforded the rights to emerging and advanced cancer treatments.
A patient has a right to options!
When my husband and I took to our personal campaign back in 2014 to raise awareness about the need for a modernized drug review and approval system of both the present therapeutic goods and pharmaceutical benefits scheme in Australia, it of course evolved from a personal understanding and the experience we faced with limited treatment options as the very real possibility of end of life loomed. As a patient you want a medical system that is willing to support you, to provide you options and to reduce the impending pain that foreseeable future holds for you. When you can see that there is a missing link in a health system that is there to serve, support and treat you, it is then that the patient voice is unleashed.
My conversation with the PM ended on a note that I personally wanted to drive home; to ensure that the decision makers of our beautiful country truly understand that if it wasn’t for drugs like ‘Keytruda’ and innovations in advanced treatment technologies (that when they work on a patient, and when like my own personal experience with Keytruda where minimal side effects were experienced), that the topic of quality of life is paramount. For the patient/s that these treatments work on, it means a return to work; a step towards a new ‘normal’. These treatments allow patients to return to being contributing members of society.
A point that is so incredibly important not only from an economic point of view (if we want to get political), but one that empowers a patient to live a life of abundance, however they desire!
So, it’s pretty safe to say, this Monday wasn’t just one of your average Mondays! Wow!
Humbled where the simple act of sharing leads to a conversation!
Transcript available publicly online by The House of Representatives – Parliament Question Time / Video available on the ABC.