IMPROVING CANCER OUTCOMES BILL 2014
Written on the 29 October 201416 October 2014 COUNCIL
Mr JENNINGS (South Eastern Metropolitan) -- On behalf of the Labor Party, I am pleased to make a positive and affirming contribution to the debate on this piece of legislation, the Improving Cancer Outcomes Bill 2014.
By definition, who could oppose such an intention and such a laudable framework? It is about ensuring that this state is able to appropriately govern the information that is available now and will be available in the future in this area. It is about ensuring that we improve our cancer services and our responsiveness in relation to patient care into the future.It is about ensuring the provision of personalised and appropriate care and better outcomes for patients with cancer, but also, very importantly, it is about ensuring that information is made available in terms of developing our capacity to prevent the proliferation of cancers in our community.
Clearly the intention of this bill is laudable. Its gestation period has been long. The people who work in cancer services, cancer agencies and Cancer Council Victoria who will be affected by this bill have worked long and hard to achieve a better legislative framework that will support their work and enable them to do it with greater confidence and certainty. The bill applies modern government practices. Clearly the opposition supports the passage of this piece of legislation.However, I have to say that I am disappointed that the government has taken this long to put this piece of legislation on the notice paper.
The fact that the Parliament of Victoria will be unable to pass this legislation is a sad indictment on the government's ability to manage its legislative program and introduce reform, and I am very sorry to make that point. I just wanted to simply make the point -- --
Hon. D. M. Davis -- Spare me!
Mr JENNINGS -- I will do my best to resist the interjections of the Minister for Health today because when I responded to his interjections yesterday he made undertakings on the public record that he subsequently reneged on. Yesterday was a very embarrassing day for the Minister for Health, and I do not seek to assist him in making today an embarrassing one for him. It would be better if he sat in his place, did not interject and did not make commitments to the people of Victoria that he is unable to meet.
Unfortunately, because this legislation has arrived and is being debated today, even though it was introduced some time ago and it was quite within the capability of the government to pass it so that this framework could be put in place and the new governance arrangements for Cancer Council Victoria could be put in place -- the Labor Party has indicated its wholehearted support for delivering that outcome -- that opportunity has been lost. That is the point that I make. That was going to be the limit of my contribution on that issue, but as is typical with the Minister for Health, it has become an issue that I have had to draw more attention to, thanks to his untimely interjection from out of his place.I give the government credit for recognising in its second-reading speech Victoria's great capability of providing quality services to patients in Victoria. We have now, and will have in the future, outstanding capability in terms of world-leading health care provided to Victorian patients.
Perhaps the best recognised agency dealing with cancer on a national scale is the Peter MacCallum Cancer Centre. But it is not the only one. The Austin Hospital has established world-leading best practice. There has been the creation of the Olivia Newton-John Cancer and Wellness Centre, and important work has been undertaken by the Monash Comprehensive Cancer Consortium, the Paediatric Integrated Cancer Service and the Integrated Cancer Services that the minister acknowledged in his second-reading speech. They are certainly worthy of our thanks and congratulations on the calibre of their work.The potential of much of the work, discipline and capability of Victorian clinicians, allied health workers and care workers will be on show in future through the Victorian Comprehensive Cancer Centre. That project is rising from its foundations in the Parkville precinct adjacent to the Royal Melbourne Hospital. I had the good fortune to be part of the Victorian Labor government that committed the funding in the forward estimates to support that project.
It also sought agreement with the then federal Labor government to provide funding for the centre and to commence the project that this government has continued on its watch, albeit sometimes a little overenthusiastically taking reflected or complete glory for it. Nonetheless it is a project of which all Victorians should be proud. The government of Victoria, whatever its complexion, should be proud and should support that capability being established. I am glad to say that the next government, regardless of its complexion, will have the opportunity to open a world-leading comprehensive cancer centre in Victoria. The people of Victoria will make a judgement between now and its opening about who the minister and the Premier of the day will be.The reform introduced by the government today is significant because it deals with contemporary governance arrangements that should apply to the regulation of the agency that plays an essential role in health promotion, sharing advice and support for best clinical practice and encouraging the community to participate in programs designed to empower them as health consumers and patients. That agency is Cancer Council Victoria. Cancer Council Victoria is well recognised not only throughout this state but also across the nation and in many ways throughout the world as being a leader in demonstrating the way best practice, community education and community empowerment can be undertaken in health care. It has been an exemplar of those things for many years.
At the heart of this legislation is the repeal of the Cancer Act 1958. This will enable the making of a new governance arrangement to support Cancer Council Victoria in its work by establishing it as a company limited by guarantee under the Corporations Act 2001.That is something that Cancer Council Victoria itself has welcomed. It issued a clear and unequivocal statement at the end of August. That relates to my slight backhand to the minister today. Once the bill was introduced he had the opportunity to get this piece of legislation well and truly passed, but he did not take that opportunity.
Cancer Council Victoria welcomed the announcement of this piece of legislation on Friday, 22 August, and it recognised the value of this legislative reform underpinning its new governance arrangements. On any occasion from that moment until now I would have welcomed the opportunity to support its achieving that status. Regardless of that, this work will be completed by the next Victorian government, irrespective of its political persuasion. It will be implemented, I am certain, because of the bipartisan support for the outcome. On behalf of the Labor Party I give the guarantee that that objective will be achieved through statute.The other important thing that happens through this piece of legislation is the clarification of the roles and responsibilities of agencies that currently hold information datasets that exist in relation to patient records and genetic information that has been gathered from patient cohorts. It enables researchers across a variety of disciplines to use and share that information in the name of better clinical outcomes and more informed research. Labor understood the importance of that work, not only in a theoretical way but also in a tangible way, and provided support to cancer and other agencies that held datasets with the establishment of BioGrid and other facilities across the state. We also recognise the important work that has been undertaken for many years by BreastScreen Victoria, the Victorian Cytology Service and other agencies that may hold information that is extremely useful for population-based research in cancer. That has been a feature of most research that has taken place in the past.Increasingly in the future those population-based research activities will not only provide better clinical guidance and better therapeutic opportunities but also, most importantly, be used in the context of personalised medicine. Personalised medicine will be a feature of health care in the future and tailored to the individual circumstances of the patient, in terms of their genetic make-up and genetic predisposition to certain forms of cancer and particular tumour types they may develop. As knowledge of cancer grows exponentially in the research community across the planet, we know about screening of cancer types, various tumours, the proliferation of cancers which develop in different forms and, increasingly, combinations of those cancer types. Genetic knowledge that can be accumulated through such datasets as those that exist in Victoria will be essential in trying to tailor the most appropriate therapeutic interventions to support patients in their survival.
When in office Labor introduced the cancer plan, which had specific targets to increase the survival rate of cancer patients in our community. We tried to do that in a number of ways, including using the datasets I have referred to and with the work commissioned under the auspices of the Victorian Cancer Agency, to make sure we had a capability that was funded in successive budgets to provide knowledge, capability and the development of a workforce in cancer health in Victoria. That was run out in parallel with our commitments to investing in new healthcare services such as the Olivia Newton-John Cancer and Wellness Centre and the Victorian Comprehensive Cancer Centre.In our term of government we had not only an understanding of these issues but also a tangible demonstration of financial support for these activities and recognition that our collective capability in Victoria is of international renown.
The current government, to its credit, has recognised that there needs to be an appropriate governing arrangement for the certainty surrounding access to those datasets. To its credit it has developed this piece of legislation which streamlines that accountability, with the ownership of those datasets formally designated to the Secretary of the Department of Health. Whilst there may be agencies that hold datasets and use datasets for a variety of purposes now and into the future, they will be authorised, sanctioned and supported by the Department of Health through the secretary to make sure there is appropriate access and appropriate quality assurance about ethical behaviours attached to the use of those datasets and also a positive framework to grow the knowledge and share the learning and capability of cancer researchers in Victoria, around Australia and around the world. In terms of international collaboration that is a feature of best practice in not only cancer research but also other areas of medical research now and into the future, and it will be underpinned by clear governance arrangements in this bill.I congratulate the minister and his department for getting to this point. I am just disappointed we did not get to this point some months, if not years, earlier, so that we could have this adopted as Victorian law. I think that opportunity has been lost. I am very enthusiastic about the content of and the outcomes that can be achieved through this bill, and I think it is disappointing that that opportunity has not been seized by the current government. I am certain the opportunity will not be lost entirely, but it would have been good to have completed this parliamentary term with some things being clearly delivered.
Ultimately I think the Victorian community is well served by our cancer health services. It is well served by clinical practice, and it is well served by the caring community in which we live.It is always extraordinary to see the goodwill and solidarity generated in our community when we hear of an incidence of cancer and when there is a call to provide financial support for agencies that provide cancer care and research. Rising up and dealing with the circumstances of cancer is one of the great humanising, uniting forces in our community. We should say in a very clear and determined way that this compassion and concern brings out the best in us.
I hope our community will continue to support our clinicians, our researchers, our community educators, our allied health professionals and those in the community who stand up to support better outcomes for cancer patients and better capability and resilience in our community to deal with the circumstances of cancer for patients, their families and their communities, because that is very important. Using the knowledge I have been talking about will hopefully mean we can develop better clinical practice, better personalised medical outcomes and better preventive health measures based on population-based measures designed to reduce the incidence of cancer in our community.
I look forward very much to supporting that from whatever my vantage point is within the Victorian community. I wish all of the professionals and all of the committed community members who embarked upon those activities well now and into the future. I wish the legislation well, and I look forward to the day it receives royal assent and is enacted.
Ms HARTLAND (Western Metropolitan) -- I will be brief in my contribution to the debate on the bill. I would like to take up something that Mr Jennings spoke about during his contribution. As I understand it the bill was introduced into the lower house of the Parliament several weeks ago. It is a very straightforward bill, and I do not understand why it has languished on the notice paper. I do not know why it could not have been brought to this house. Nobody is opposing it. Clearly it has a great deal of support from Cancer Council Victoria because it says it will improve its governance structures and bring them into line with those of other councils across the country.The bill makes important changes to the governance of Cancer Council Victoria and the Peter MacCallum Cancer Institute (Peter Mac), which better reflects their status as incredibly respected organisations. The move to mandate a four-year cancer plan is a positive step. The previous plan has now lapsed, and action in the area is needed very quickly.
I remind the government of the importance of including prevention in the plan. Obviously this is around the issues of reducing smoking rates, testing for various cancers, screening and the issues of melanoma. Sometimes we think that management and cure is a focus in respect of cancer, but let us see what we can do to prevent and reduce the numbers of cancers.
With those comments I note that the Greens will be supporting the bill. It is straightforward, it is needed and it will improve the services that Cancer Council Victoria, Peter Mac and other bodies can provide in the state.
Ms CROZIER (Southern Metropolitan) -- I am pleased to rise to speak to the very important Improving Cancer Outcomes Bill 2014, which comes before the house on the last sitting day of the 57th Parliament. It reflects a necessary change to an old act not relevant to the 21st century.I am pleased that Ms Hartland and Mr Jennings are supporting the bill, but I will take up some of their comments in relation to its timing. On the last sitting day of a Parliament there will always be commentary around legislation brought into the house to be debated and questions asked about why they could not have been brought forward earlier.
In relation to the comments made by Mr Jennings, the bill will in part repeal an old act. We are in the 14th year of the 21st century. The Labor Party had 10 years in government during that time, and it had plenty of time to look at the issues we are debating today. The government and the minister in particular should be congratulated for working with a number of organisations to ensure that we reflect what is happening today and for bringing some governance issues to hand. The comments about the bill and its timing are puerile in relation to the importance of the bill.It is my understanding that in the last Parliament somewhere around 336 bills were passed, and in this Parliament it will be a similar number. I am not sure the previous Parliament had quite such an obstructive opposition.
This is a bill for an act to articulate the role and functions of the Secretary of the Department of Health with respect to cancer; to establish a framework for the collection, management, use and disclosure of information relating to cancer; to require the preparation of a plan providing a strategic policy framework for cancer in Victoria; to provide for the registration of the Anti-Cancer Council of Victoria as a company limited by guarantee under the commonwealth Corporations Act 2001; to repeal the Cancer Act 1958, and for other purposes.The bill complements and supports other legislation to promote and protect public health and wellbeing.
These include the Public Health and Wellbeing Act 2008, the Radiation Act 2005 and the Tobacco Act 1987. The first two acts contribute to a more effective cancer control system. The Tobacco Act specifically seeks to reduce the burden of one of the major causes of cancer in Victoria -- that is, smoking, and I will speak more about that later in my contribution.The bill alters the legal status of Cancer Council Victoria from being a statutory entity to a company limited by guarantee, reducing its regulatory burden and bringing it into line with cancer councils in other Australian jurisdictions. However, the bill does not change the entity's property, rights, liabilities and staff. I acknowledge the enormous and significant work that Cancer Council Victoria has done over a number of years in relation to preventative health measures in the state, bringing awareness to the Victorian community and working in conjunction with many organisations to improve the health and wellbeing of Victorians.
The incidence of cancer in our community continues to be an enormous burden not only on individuals and their families but also on our health services. In saying that I acknowledge that there have been some very positive and significant advancements in how we diagnose, treat and manage cancer. As Mr Jennings said, in Victoria we have a proud and internationally renowned reputation and record of medical research, which in many instances has been at the forefront of cancer research and ultimately improved diagnosis, treatment and management of cancer.Our medical research industry has been a leader. I pay tribute to those research institutes for the work they have done and continue to do, whether that be on advancements in cures for chronic diseases, such as diabetes and cancer, or the development of vaccines or innovation through the development of improved technologies. I also pay tribute to the tens of thousands of health professionals and allied health professionals across our health system for the work they do each and every day to manage patients with their cancer diagnosis, treatment and care, and also in many instances for the support they provide towards the end of a person's life in such a respectful and caring manner. Telling someone they have cancer is not easy. The emotion, particularly when it involves a young person, can affect even the most stoic of health professionals. I am sure that many members in this chamber have their own stories of knowing someone who has suffered or of being involved with someone close to them who has been diagnosed with cancer.
The statistics are enormous and alarming. They equate to around 80 new diagnoses and 30 deaths every day. As our population both ages and grows, these numbers are going to continue to increase. In 2012 cancer deaths in Victoria resulted in the early loss of 60 000 years of life. When I was looking at some of these statistics, including some from Cancer Council Victoria that looked at local government areas, I noted that in one particular area in my electorate of Southern Metropolitan Region -- the Glen Eira area -- the statistics demonstrated that between 2007 and 2011 there were 755 cases of cancer, of which 392 were males and 362 females, which equates to around 2.67 per cent of the Victorian population.The major cancers are well known to many of us, and they are highlighted in these statistics in a number of local government areas that I researched, and they include bowel, prostate, breast and lung cancer and melanoma.
I think Cancer Council Victoria is doing a tremendous amount of work in highlighting to the community preventative measures to prevent those dreadful cancers from occurring. Thankfully though, as I said, the quality and standard of treatment and care in this country and particularly in this state are things that we can all be very proud of.To return to the thrust of what this bill is about, it aims to improve cancer outcomes and support Victoria's efforts to reduce cancer incidence, morbidity and mortality, and to enhance the wellbeing of those affected by cancer. The Minister for Mental Health, Minister Wooldridge, in her second-reading speech in the Legislative Assembly highlighted the history of a long and dedicated tradition in cancer legislation 'the nature and purpose of which have evolved over time'. A review of the Cancer Act 1958 was undertaken because, despite the act having undergone many amendments since 1958, it has failed to keep pace with the many significant advancements in the understanding and control of cancer.
Many of these advances have been facilitated by improvements in the collection, use and disclosure of information relating to cancer. The act, however, hinders the collection, use-sharing and linking of data that is needed to support policy, service planning and service improvements to reduce the burden of cancer.In undertaking the review there were many significant stakeholders involved either through interviews or by attending scoping sessions. Their input was critical in understanding how further improvements may be achieved, and the stakeholders strongly supported significant change to the legislation, with specific attention to enabling the collection of a broader range of cancer and health data and to improving the access to collected data and allowing data sharing.
There were a number of stakeholders consulted in the process, and of course Cancer Council Victoria was a major contributor, but they also included BreastScreen Victoria, the Peter MacCallum Cancer Centre, the Victorian Cancer Agency, the Victorian Cancer Biobank, the Victorian Cancer Registry, the Victorian Cervical Cytology Registry, the Victorian Comprehensive Cancer Centre, Integrated Cancer Services, a range of health service providers, consumer representatives, other government departments, General Practice Victoria, the Olivia Newton-John Cancer and Wellness Centre, the Royal College of Pathologists Australasia, Cancer Council Victoria's Clinical Network, the Victorian Cytology Service and, as I said, officers of the health services and privacy commissioners.The key issues with the Cancer Act 1958 include outdated models of governance and data collection and insufficient support for public health and protection for early detection and treatment. The act does not adequately reflect contemporary privacy legislation, and it does not provide a cancer information system that is sufficiently flexible to support operational and planning requirements.
Importantly the Secretary of the Department of Health has a critical role to play in supporting the recording of the incidence of cancer within Victoria and hence a critical role in relation to the data that will be collected.Currently Victoria has a number of cancer registries, and registries are a long-established system that is both nationally and internationally recognised and provides a best practice approach to population screening and cancer control. Importantly in this respect the secretary has clear responsibility for maintaining the cancer registries and will be the custodian of data. It is equally important to note that the bill obliges the secretary to impose confidentiality, privacy and security obligations on any contracted service provider. The bill allows for the secretary to enter into contractual arrangements with organisations such as Cancer Council Victoria, the Victorian Cytology Service and Breastscreen Victoria, which will continue to collect and record information on the secretary's behalf.
Further to privacy and the collection of data, the bill is clear in its approach to the collection of personal health information being consistent with the health privacy principles, which are articulated very clearly in the Health Records Act 2001.This government has, as have previous governments, supported a continued focus on public and political attention on cancer awareness, prevention, treatment and research. In this term the Victorian coalition government has been responsible for a number of cancer-related bills that will further assist with cancer prevention measures. They include various amendments to the Tobacco Act 1987 and banning smoking in child play centres, at public premises such as hospitals and in government buildings such as the Parliament and the courts. There have been a number of other initiatives that will go further towards protecting the public. They relate to banning smoking on train platforms and at various other locations, such as patrolled beaches and the like.
This government has brought a number of very good initiatives before the Parliament, and we are very committed to further prevention and doing as much as possible to reduce the incidence of cancer throughout the state.
As I said, this bill reflects a modern, flexible and principle-based legislative framework that supports the government's overall strategy for cancer control and at the same time strengthens Victoria's ability to respond to scientific, technological and future policy developments relating to cancer. As I said also, this is a very important bill. It will go towards protecting the Victorian public further. It will play a critical role in the governance issues surrounding data -- the privacy issues -- and it has had a lot of input from a number of very important stakeholders, not least Cancer Council Victoria, which I have mentioned. Along with other members, I commend the bill to the house and wish it a speedy passage.
Mr FINN (Western Metropolitan) -- I rise to support this bill today with considerable enthusiasm. I suppose I rise to represent those who have been impacted by cancer. As somebody who has had cancer visited upon his family all too often and with very tragic results, I think it is important that as this house discusses this bill members realise just how devastating cancer is in our community.I was three years of age when my father was diagnosed with Hodgkin's disease. At that stage the Peter MacCallum Cancer Centre was the Peter MacCallum Clinic, and I spent a good deal of my childhood at that clinic, which was in Little Lonsdale Street, as I recall. We drove down from Colac at least once a month so that Dad could have chemotherapy and other treatments. He fought that cancer for 17 years. It claimed him when I was 20.
While Dad fought it for 17 years, it gives me some consolation to know that six months after he passed away scientists came up with a cure for the cancer that killed him and that he had contributed to that cure in that he had allowed himself to be used as a human guinea pig. So many times, when visiting oncologists or local doctors wanted to open him up and have a look around, he would always acquiesce to their requests.My experience with cancer is inbuilt. It is something that I quite literally grew up with. I can never forget the impact my father's cancer had on our family and, he having been a farmer, the impact it had on him. Even when he was very ill he still had to go out and do what farmers do. That impacted on me very greatly, so it was a matter of some very considerable distress when, just a few short years after Dad passed away, my mother received a diagnosis of breast cancer. After the 17 years we had experienced and the death of my father, that really shook us all to the core. We could not believe this was actually happening. I should say it had been a matter of a misdiagnosis. My mother had been told by a so-called leading surgeon that she had cysts. No, she had advanced breast cancer. She fought it for about four or five years before it claimed her. She was 50 years of age -- she died the week before her 51st birthday. I should point out that my father died at the age of 44.
I look back on this as one of the greatest injustices I will ever experience -- to have seen a mother and father die so young. If I am ever in a position to ask the good Lord above why he did that, I am going to do so, because it is something I would certainly like to have answered. It obviously still to this day has a huge impact on me and my younger brother and sister. Cancer is just a part of our lives -- a rotten, evil part of our lives, a part of our lives we wish we had not had and wish we could get rid of, but a part of our lives nonetheless.It was beyond belief, then, when a bit over 10 years ago probably my closest friend in the world rang me to tell me that she had cancer and had only a few months to live. She died at the age of 48.
I say these things not to elicit sympathy or because I feel sorry for myself or for my family in any way but just to reinforce the point of how devastating cancer is to so many people. Cancer is not something that has hit just my family; it has hit so many families throughout the community for so long. I live for the day when cancer is totally eradicated. I wish those doctors and surgeons -- those charged with the responsibility of finding a solution to this dreadful problem -- all the very best, and I will help them in every way I possibly can.I am delighted that the Parliament is passing this bill today.
I will not say any more, in recognition of the fact that we want to get this bill through as soon as we can today, but I think it important that we all accept that cancer is an evil in our society that must be cut out. It must be eradicated. It must be destroyed, and the sooner that happens the better for us all, for our families and for everybody in the community.Business interrupted pursuant to standing orders.