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National Action Plan represents Australian first opportunity to achieve zero lives lost to blood cancer by 2035

National Action Plan represents Australian first opportunity to achieve zero lives lost to blood cancer by 2035

Sunday, September 27 2020

The Leukaemia Foundation has today welcomed the Federal Government’s release[1] of the National Strategic Action Plan for Blood Cancer, a first of-its-kind report to unite Australia towards a goal of zero lives lost to blood cancer by 2035.

Released today by Federal Minister for Health, The Hon. Greg Hunt MP, the groundbreaking National Action Plan was developed by the Blood Cancer Taskforce together with the broader blood cancer community and provides an evidence-based blueprint setting the national agenda to cure and conquer blood cancers.

It is the roadmap to achieve the vision of zero lives lost to blood cancer by 2035, underpinned by zero preventable deaths regardless of geography or background, through equitable access to best practice treatment and care for all Australians.

The release of the National Action Plan during Blood Cancer Awareness Month this September comes one year since the Minister established the Blood Cancer Taskforce and charged the unique collaboration of 29 of the country’s top blood cancer experts, patients and leaders with developing the agenda for change. The move was prompted by the release of the Leukaemia Foundation’s State of the Nation: Blood Cancer in Australia report.

Today’s National Action Plan launch includes Federal Government funding support to continue the work of the Taskforce into the future and kickstart implementation of actions within the plan.

Leukaemia Foundation Acting CEO Alex Struthers said the significance of today’s announcement for Australians living with blood cancer could not be overstated.

“Today, together, we turn the tables on blood cancer in this country,” she said.

“The release of the National Action Plan backed by the support of the Federal Government marks a paradigm shift to change the face of treatment and survival outcomes for all Australians facing blood cancer.

“We congratulate the Federal Government for elevating the growing issue of blood cancer to the national agenda. This is a vital moment in time which will lead to significant, positive change for people across our country living with this disease for generations to come.”

“We are delighted to continue as the lead organisation to support the Taskforce in its work to implement the recommendations of the National Action Plan.”

Ms Struthers said the Leukaemia Foundation was proud to have played a key role in bringing the issue of blood cancer into the national spotlight by commissioning the State of the Nation report – a comprehensive, evidence-based report which identified that blood cancer is more significant and prevalent than ever before.

“For the past 45 years, the Leukaemia Foundation has supported and advocated for people living with blood cancer, standing with every Australian affected by this disease to be their voice and their someone-to-turn-to and fighting to get them access to the best treatment, care and support,” she said.

“Through the release of the State of the Nation report last year, we began ushering in a new era of change for the national blood cancer community, and, united with that community, we have worked hard since to build momentum towards targeted national action to cure and conquer blood cancers, which is what we are seeing today.”

Ms Struthers said while Australia had strong health systems across the country which were achieving remarkable results in improving blood cancer survival rates and treatment, there was more work to be done to improve access to treatment and supportive care.

“The Leukaemia Foundation wants to ensure all Australians living with blood cancer have the same access to the best treatments, services and care, at the right time, no matter where they live. Breaking down these barriers is our priority,” she said.

“It is our hope that implementation of the National Action Plan will unite Australia’s blood cancer community and governments to bridge gaps in treatment and care, and, ultimately, realise what is now a shared vision to see zero lives lost to blood cancer by 2035.”

The National Strategic Action Plan identifies four major priorities to improve outcomes for people living with blood cancer and their families:
•    Achieve best practice
•    Empower patients and their families
•    Accelerate research
•    Enable Access to novel and specialised therapies

“The National Action Plan shows us that through coordinated and strategic collaboration between patients, patient organisations, clinicians, researchers, industry and government, we could see greater access to evidence-based treatments and care nationally, which will improve survival rates for Australians living with blood cancer,” Ms Struthers said.

“Equally important, it also shows us the potential to collectively reimagine how we are all walking alongside people living with blood cancer, empowering them throughout their journey and supporting them to live full lives after diagnosis.

“The Leukaemia Foundation celebrates the National Action Plan as an exciting opportunity to transform blood cancer treatment and care. We look forward to joining with the broader blood cancer community to support its implementation and, ultimately, save and improve thousands of Australian lives today and into the future.”

View the full National Strategic Action Plan here.

A complete list of Blood Cancer Taskforce members is available here.

Leukaemia Foundation spokespeople are available for comment by contacting the Leukaemia Foundation media team on media@leukaemia.org.au

END

About Blood Cancer in Australia
Incidence and Mortality[2]:

  • Every year, 17,321 Australians will be newly diagnosed with blood cancer such as leukaemia, lymphoma and myeloma. This is equivalent to 47 people every day or one person every 31 minutes.
  • Incidence of blood cancer continues to grow. Over the past 10 years, incidence of blood cancer has increased by over 30%.
  • Blood cancer does not discriminate. It can develop in anyone, can occur at any age and at any stage of life across all states and territories, from children to adolescents and young adults to working adults with families and older Australians.
  • When combined, blood cancers are among the most frequently diagnosed cancers in Australia, and the most significant cause of non-preventable cancer death.
  • One in 10 Australians diagnosed with cancer will have a blood cancer.
  • Over 5,600 people in Australia are expected to lose their life to blood cancer or related blood disorders this year. This is equivalent to 15 people per day in Australia.
  • Blood cancer is one of the highest causes of cancer death in Australia, claiming more lives than breast cancer (3,031) and melanoma (1,375) combined.
  • Approximately one in nine cancer deaths in Australia will be due to blood cancer.
  • There are no screening programs available for blood cancers, and there is no way to prevent blood cancer through lifestyle change.

Prevalence[3]:

  • Based on AIHW data, the State of the Nation: Blood Cancer in Australia report identified issues with the under notification of blood cancers in Australia and anticipates that more than 110,000 people are currently living with blood cancer or a related blood disorder in Australia today.

Daratumumab – first new myeloma agent PBAC-recommended in years

Daratumumab – first new myeloma agent PBAC-recommended in years

For the first time in 13 years, a new agent with a different mode of action against myeloma, daratumumab (Darzalex®), has been recommended for Pharmaceutical Benefits Scheme (PBS) reimbursement.

At the July 2020 meeting of the Pharmaceutical Benefits Advisory Committee (PBAC), daratumumab received a positive recommendation for PBS listing as a second line treatment, in combination with bortezomib (Velcade®) and dexamethasone for patients with myeloma.

In a submission to the PBAC in June 2020, the Leukaemia Foundation provided consumer comments in relation to daratumumab, based on the everyday experiences of people living with myeloma.

Peter, a myeloma patient from Western Australia, said:

Darzalex “This drug is proving revolutionary in the fight against this terminal blood cancer and should be available as a permanent line of therapy [as] it can extend or save lives.”

The Leukaemia Foundation’s submission also stated that, based on the summary clinical trial information provided, “we understand daratumumab-based combinations have demonstrated efficacy in comparison to other agents tested in head-to-head relapsed or refractory myeloma trials in terms of delaying disease progression and response rates, and have also been shown to lead to molecular remissions in a greater number of patients with relapsed multiple myeloma”.

The PBAC noted in its recommendation that daratumumab monotherapy would be provided by the sponsor (Janssen), on a compassionate basis, to all eligible relapsed and/or refractory (R/R) myeloma patients who have no other PBS-funded treatment options.

A study, published in an August 2020 online issue of Journal of Hematology & Oncology, confirmed and extended the previously known effectiveness and tolerability of daratumumab plus standard of care (bortezomib/dexamethasone) as a treatment for R/R myeloma.

The Leukaemia Foundation also made a submission to the PBAC for carfilzomib (Kyprolis®).

“We received eight responses to the request for feedback on this submission,” said Emily Forrest, the Leukaemia Foundation’s Head of Policy and Advocacy.

“Views amongst patients and their families/carers were mixed, with some concerned about the side-effects of the treatment,” said Emily.

“There is a high unmet need for new treatments for myeloma, which is currently an incurable disease which becomes progressively harder to treat after each relapse as patients become refractory to different treatments.

“We believe that the listing amendment for carfilzomib would provide clinicians with additional choice in therapy regimens for patients with refractory myeloma.”

Carfilzomib also received a positive recommendation to amendments to the dosing regimen and a change to a streamlined authority level, as sought by the sponsor (Amgen Australia).

Emily said the Leukaemia Foundation would provide submissions to the PBAC for consideration at its November 2020 meeting for elotuzumab (Emplicit®) and ixazomib (Ninlaro®) for patients with R/R myeloma.

Read Shirley Irwin’s experience with myeloma and a range of treatments including carfilzomib and daratumumab. (add link to story)

Breaking barriers: At the table with best and brightest

Breaking barriers: At the table with best and brightest

Deb Sims with her family
Deb Sims with her family

This year is the tenth Blood Cancer Awareness Month and Deb Sims shares her story to help us mark this important awareness month. Deb has blood cancer and is also a member of the Blood Cancer Taskforce.

I moved back to Australia from London in 2006 and, in 2011, was diagnosed in Melbourne at the age of 38 with a blood cancer called chronic lymphocytic leukaemia (CLL) and given five years to live. The average patient is a 72-year-old man. My children were aged only seven, five and two at the time.

I had chemo in 2013, relapsed as doctors said I would, and was about to have a risky bone marrow transplant when I discovered there was a trial of a new drug which I could get onto if I moved back to the UK.  My youngest child was in prep and I had to kiss her and her older brothers goodbye and fly to London.

I stayed there for seven months with the children visiting me in school holidays.  That treatment put me into three years of clinical remission with no detectable disease, but I had to commute to London to stay on the clinical trial for two and a half years after my doctors allowed me to move back to Australia in early 2016.

The first year was monthly flights. I’d leave Melbourne on a Tuesday afternoon arrive in London on a Wednesday morning, go to Barts Hospital, do the tests for the trial, pick up my drug and then fly back to Australia on the Thursday morning arriving back in Melbourne on the Friday night.

I did 10 flights to London in a year.  After that it was every three months for another 18 months so it was still difficult. I cried when I was able to get the drug in Australia and stop commuting.  That drug was invented in Australia at the WEHI in Melbourne and wasn’t even approved by the US Food and Drug Administration when I started it. It’s now on Australia’s Pharmaceutical Benefits Scheme (PBS) .

I came off that novel therapy just after I had the honour to start working on the Blood Cancer Taskforce. In fact, three of my doctors are on the taskforce with me and it’s incredible to be at the table with Australia’s best and brightest blood cancer experts.

And I’m living the work we’re doing: I’m now on another novel therapy that was only listed on the PBS last year and I’m about to become one of the first patients with CLL in Australia to have CAR-T, a highly experimental and expensive but potentially curative treatment for my disease.

I go into hospital next week (September 2020).  This is my fifth line treatment.  It won’t be easy but we’ll know if it has worked by mid October.

The treatment I’m about to have is another first-in-human study and only five centres in the world are offering this trial. The Peter Mac in Melbourne is the only hospital outside of the US to be offering it thanks to the funding the hospital received to set up a centre for CAR-T a year ago.

I strongly feel it’s my role as the patient representative on the taskforce to make sure all blood cancer patients, no matter where they live, have access to the right treatments for them at the right time.

We must also make sure every patient knows about clinical trials and is able to have the opportunity to get on them. We’re fortunate in that we get so many of them in Australia.

I also believe we can close the gap in outcomes and eliminate unnecessary deaths to blood cancer and that’s why I’m so proud of what the taskforce has achieved so far but this is just the start. After we release the National Strategic Action Plan for Blood Cancer the work begins to implement our recommendations. I hope I’ll be able to help with that, too.

I’m a journalist, working full time, as well as home schooling, and the whole Covid-19 experience has actually made me feel safer than ever before because everyone around me is taking precautions. Although I’m ready to stop being locked down now (and so are my children and the rest of Melbourne I think)!   They’re 16, 13 and 10 now and I’ve outlived my prognosis by five years.

I’m hoping that scientists and my doctors will help that continue for many years to come.

Breaking barriers: Sharyn’s 130,000km journey to treatment

Breaking barriers: Sharyn’s 130,000km journey to treatment

Blood cancer survivor Sharyn Polce has experienced first-hand the ‘postcode lottery’ of treatment, after travelling neary 130,000km in four years to access the treatment she needed.

Sharyn Polce at her 50th birthday celebrations
Sharyn at her 50th birthday celebrations

 

While we mark the tenth anniversary of Blood Cancer Awareness Month, Sharyn will also be celebrating ten years since her diagnosis with a blood cancer called chronic myeloid leukaemia (CML).

The mother-of-two from Perth was first diagnosed only two weeks after her 40th birthday in 2010.

“The diagnosis was life-changing and came just months after my best friend lost their child to leukaemia,” remembered the now 50-year-old.

Sharyn Polce with her children
Sharyn with her daughter, Dani and son, Jake

Six years after her diagnosis, Sharyn was still struggling to conquer the disease.

“I had been through four rounds of chemotherapy but just kept on relapsing and all other forms of treatment had failed,” explained Sharyn.

“My only other chance for a cure was a stem cell transplant which proved impossible. Out of the millions of people on the National Bone Marrow Registry, not one was a match.”

Sharyn was finally given hope with the chance to take part in a ‘first-in-human’ trial run by world-leading Adelaide CML specialist and Blood Cancer Taskforce member, Dr Timothy Hughes.

The trial was Sharyn’s only option and she had to relocate to Adelaide to be part of it.

Living with blood cancer for so many years meant Sharyn had been unable to work and had already sold her house. Money for accommodation and transport was tight.

Sharyn and her partner, Troy Pegrum, temporarily relocated from Perth into a unit at the purpose-built Bridgestone Australia Leukaemia Foundation Village in Adelaide.

Sharyn Polce with her partner Troy
Sharyn with her partner, Troy

The village is a home away-from-home for regional patients like Sharyn who are forced to relocate to capital cities for vital treatment.

“Without the Leukaemia Foundation there was just no way we could have afforded to stay in Adelaide,” said Sharyn.

“Because your life depends on these drugs and the trial, you’ve got no choice. You’re basically hoping these drugs save your life and kill your cancer before it kills you.”

Since 2016, Sharyn has been forced to travel back and forth to her trial in Adelaide every month, around 24 times in total.

Incredibly she has covered more than 129,000km and its cost her around $20,000 in airfares alone.

This Blood Cancer Awareness Month, the Leukaemia Foundation has prioritised ending the postcode lottery faced by regional patients.

Last year’s first-of-its-kind State of the Nation: Blood Cancer in Australia report revealed a 13 per cent gap in survival rates between patients in regional and metropolitan areas (5%), and between states and territories (8%).

By breaking down these barriers and removing variations in access to best practice treatment and care, Australia could minimise mortality and potentially save up to 22,000 lives by 2035.

You’re a part of the blood cancer revolution!

You’re a part of the blood cancer revolution!

Our supporters are driving something truly significant this September – a once-in-a-generation opportunity to reduce the impact of blood cancer.

Deb Sims sitting with her three young children.
Deborah Sims, Blood Cancer Taskforce member (pictured with her three children). Deb was diagnosed with chronic lymphocytic leukaemia (CLL) in 2011, aged 38.

Many people know blood cancer is one of this country’s most common, costly and fatal cancers. It can affect anyone, at any stage of life – often with no warning signs.

Sadly, for children and teenagers, blood cancer is still the most commonly diagnosed cancer.

Last year’s State of the Nation report was the first of its kind, looking at the factors influencing survival and quality of life for Australians with blood cancer.

What this report found is very concerning.

In short, there are many obstacles standing between people with blood cancer and the treatment that’s best for them. Whether it’s where they live, if they’re being advised about clinical trials, or simply if they have enough money to pay for the right treatment.

Thankfully, this September in Blood Cancer Awareness Month, your support can help enable a new plan.

Australia’s first-ever National Strategic Action Plan for Blood Cancer is a blueprint for change, tackling the tough issues facing people affected by these diseases.

It re-imagines the way treatment and care of blood cancer patients is delivered across our country.

The plan recommends change right through the blood cancer experience. From the moment a person is diagnosed, through their treatment and recovery and adjustment to life beyond treatment – wherever they live in Australia and whatever their background.

It also looks at the challenges many people face – including those living in regional or remote areas, Aboriginal and Torres Strait Islander communities, and people with diverse and varied cultural and ethnic backgrounds.

This plan was led by our Blood Cancer Taskforce, Australia’s best and brightest blood cancer experts – and our generous supporters helped make it happen!

The Taskforce is a joint initiative between the Leukaemia Foundation and the Federal Government, made up of Australia’s leading haematologists, blood cancer researchers, industry experts and Australians diagnosed with blood cancer. They combined their brainpower, experience and determination to develop a vital pathway to change.

Achieving best practice; Empower patients and families; enable access to novel and specialised therapies; accelerate research
The Taskforce has real progress in their sights

This September, you can progress the fight to conquer blood cancer. Find out how you can help people with blood cancer get the treatments they need.

“Being part of the Taskforce is an incredible honour as I know first-hand how urgent it is for this country to improve treatment approaches to blood cancer. I moved to the UK for an experimental drug I needed to survive. In a cruel irony, a drug that was originally developed in Melbourne. Clinical trials offer more than hope for the future in some cases they literally offer life.

Thank you to everyone who is standing with us against this devastating disease – you are giving people living with blood cancer a better tomorrow.”

– Deborah Sims, Blood Cancer Taskforce member (pictured at the top of this article)

Blood Cancer Taskforce develops national plan

Blood Cancer Taskforce develops national plan

Australia icon

The Blood Cancer Taskforce has brought the Australian blood cancer community together to develop the first National Strategic Action Plan for Blood Cancer.

Development of the National Action Plan has involved consultation with clinicians, people with blood cancer, their carers and families, researchers, and a host of blood cancer experts.

Due for public launch in September, the National Action Plan is a once-in-a-generation opportunity to reduce the impact of blood cancer and re-imagine the way treatment and care of blood cancer patients is planned and administered across Australia.

As the Leukaemia Foundation’s State of the Nation: Blood Cancer in Australia report, released in 2019, so clearly demonstrated; the economic and personal costs of not acting with urgency on blood cancer are too great to bear.

The Leukaemia Foundation looks forward to working together with the blood cancer community to implement the National Action Plan and achieve zero lives lost to blood cancer by 2035.

Novel combination therapy now available for myeloma patients through PBS

Novel combination therapy now available for myeloma patients through PBS

Wednesday June 3, 2020

The Leukaemia Foundation has welcomed news that a new novel combination therapy option will now be available to more myeloma patients through the Pharmaceutical Benefits Scheme (PBS).

Federal Minister for Health, The Hon. Greg Hunt MP, has announced an expansion to the listing of lenalidomide (Revlimid®) on the PBS Highly Specialised Drugs Program to allow use in combination with bortezomib (Velcade®) and dexamethasone for newly-diagnosed multiple myeloma patients.

Minister Hunt said it is estimated up to 2,300 patients may benefit from this listing each year.

Lenalidomide is an oral immune-modulating medicine that helps a patient’s immune system recognise and destroy myeloma cells, as well as preventing new cancer growth.

This announcement follows news on April 1 that the medicine would be made available through the PBS to newly-diagnosed myeloma patients receiving maintenance treatment who have already undergone an autologous stem cell transplant.

Leukaemia Foundation General Manager of People Living with Blood Cancer Kathryn Huntley said the Leukaemia Foundation had advocated for both PBS listings, with lenalidomide being one of six myeloma medicines the organisation has actively advocated for increased access to in the past year.

Ms Huntley said she understood the combination is the first novel triplet therapy reimbursed in Australia for these patients, and a highly effective treatment option with generally manageable side effects.

“The Leukaemia Foundation is grateful this triplet combination therapy will now be a more readily accessible and affordable treatment option for Australians living with multiple myeloma who need it most,” she said.

“There is a high unmet need for more treatment options for people living with myeloma and the Leukaemia Foundation’s priority is to ensure that all Australians living with blood cancer have access to the best therapies and treatments available.

“New, improved and more timely treatment options like these that can reduce toxicity and side effects, improve survival outcomes and a patient’s quality of life are always welcome.

“This announcement is another step in improving the lives of myeloma patients, and we look forward to seeing further progress to improve survival and quality of life for all Australians living with this blood cancer into the future.”

Around 18,000 Australians are currently living with myeloma, also known as multiple myeloma. It is a complex and relatively rare blood cancer affecting the body’s plasma cells, which produce antibodies. Myeloma develops when plasma cells undergo a cancerous change and multiply at an increasing rate, taking over the bone marrow. Patients experience weaker bones which are more prone to breaking, as well as bone pain, kidney damage, frequent infections, anaemia and increased bleeding and bruising.

Currently, 2,074 people are diagnosed with myeloma each year, however it is expected 4,952 people will be diagnosed with this type of blood cancer in 2035. Sadly, 1,098 Australians already lose their life to myeloma each year, and this figure is projected to increase to 3,037 people by 2035.[1]

“While treatment options and survival rates for some blood cancers are improving, the sad reality is that myeloma is not curable, and the impact of a diagnosis of myeloma on peoples’ lives and the ongoing affect to their health remains severe,” Ms Huntley said.

“That is why the Leukaemia Foundation is committed to empowering Australians living with myeloma with access to the best information, support, treatment and care so they can manage its impacts and live well with their blood cancer.”

Late last year the Leukaemia Foundation released the State of the Nation: Blood Cancer in Australia report, which led to Minister Hunt supporting the Leukaemia Foundation to establish a Blood Cancer Taskforce. The Taskforce is now working towards delivering Australia’s first National Strategic Action Plan for Blood Cancer, bolstering the Leukaemia Foundation’s goal to see zero lives lost from blood cancer by 2035.

The Blood Cancer Taskforce unites Australia’s leading haematologists, researchers, patients and members of the blood cancer ecosystem for the first time to work with the Leukaemia Foundation to develop the National Action Plan, which will provide a blueprint to tackle key issues facing people affected by blood cancer, today and into the future.

Ms Huntley said the formation of the Taskforce and development of the National Action Plan together mark a major milestone for the blood cancer community and will set the national agenda around blood cancer for many years to come. The National Action Plan is due for release later this year.

The Leukaemia Foundation provides free practical, emotional and educational support to Australians diagnosed with a blood cancer including myeloma. The Leukaemia Foundation produces a series of disease specific newsletters including Myeloma News, and invites all Australians living with the disease to subscribe to ongoing information here.

– ENDS –

[1] http://www.leukaemia.org.au/how-we-can-help/advocacy-and-policy/state-of-the-nation-my-life-counts/state-of-the-nation-download/

Subscribe to receive the Leukaemia Foundation’s news and updates here.

Meet the Blood Cancer Taskforce: Prof. Tim Hughes

Meet the Blood Cancer Taskforce: Prof. Tim Hughes

Taskforce member Professor Tim Hughes
Taskforce member Professor Tim Hughes

The Blood Cancer Taskforce is well on its way to developing Australia’s first National Strategic Action Plan for Blood Cancer. We ask some of the Taskforce members what drives their passion for blood cancer.

Why did you want to be part of the Taskforce?

I think the Blood Cancer Taskforce is going to have a big impact on the way we manage blood cancers over the next 20 to 30 years, so to be able to contribute to that is going to be a huge honour and a huge opportunity.

What led to you become a part of the blood cancer community?

I’ve dedicated my entire career – since the late-1980s – to research in blood cancers and to improving outcomes for patients with blood cancers. I think being a part of that community is essential to the whole process, so I’m very keen to be involved with the researchers, with the clinicians, and with the patients who are dedicated to improving outcomes and that’s why I’ve been involved for so many years.

What drives your passion to help people with blood cancer?

Blood cancers, unlike a lot of solid cancers, if treated appropriately potentially lead to a normal quality, normal duration of life. The stakes are so amazingly high in blood cancers so that increases the satisfaction of developing better therapies but also increases the pressure on us as clinicians to continue to improve, particularly in areas where results have not been dramatically improved over the past few decades, the motivation to continue to make further improvements in all the blood cancers is very strong.

How do you think the Taskforce might improve the lives of people with a blood cancer?

I think the strength of the Blood Cancer Taskforce is that it is looking at the picture not from one, narrow perspective but from the broadest of perspectives, including how we communicate with patients, how we work together as clinicians to improve outcomes, how we improve our recruitment to trials. It’s looking at the broadest questions that we can possibly ask. And it’s also doing it in a very ambitious way, not just trying to make an incremental improvement, but to really transform the outcome for patients with blood cancers. I think that has been a fantastic innovation from the Leukaemia Foundation and I’m very excited about what it might bring for my patients over the next decade or more.

What is your key piece of advice for someone living with a blood cancer?

My advice would be to seek as much information as possible before making decisions about treatment choices and that might include talking to the Leukaemia Foundation and other groups that support patients with blood cancer – that can provide a very helpful perspective. It includes bringing other members of the family or close friends with you to the initial critical consultations, so you get a team approach to decision-making and you are not left with the entire decision-making process on your own shoulders.

It includes doing some broad reading before discussions with the doctor, so you are prepared and have the questions, that you have written down so you have all the information you need to get from the doctor and can challenge him on questions where you have information that might be contrary to what you are hearing, so you are able to have a mature conversation with the clinician to really get the best information to make those critical early decisions about the best management.

The Leukaemia Foundation is always there to provide support to people living with a blood cancer – just call 1800 620 420 and ask to speak with your local Blood Cancer Support Coordinator.

Tim is Cancer Theme Leader with the South Australian Health and Medical Research Institute (SAHMRI) and Consultant Haematologist at the Royal Adelaide Hospital.

Meet the Blood Cancer Taskforce: Carmel O’Kane

Meet the Blood Cancer Taskforce: Carmel O’Kane

Carmel O'Kane, Cancer Nurse Practitioner and Manager of the Wimmera Cancer Centre and the Vice President & Director Professional Practice for the Cancer Nurses Society of Australia.

The Blood Cancer Taskforce is well on its way to developing Australia’s first National Strategic Action Plan for Blood Cancer. We ask some of the Taskforce members what drives their passion for blood cancer.

Why did you want to be part of the Taskforce?

I was identified because of my work with the Cancer Nurses Society of Australia (CNSA). However, my passion to improve equity of care for rural and regional Australians is the reason I want to participate.

What led to you become a part of the blood cancer community?

I’ve been a cancer nurse (for both solid tumours and blood cancers) for 24 years – with the last eight years working in rural and regional Australia. Improving every person’s experience with cancer is very important to me.

What drives your passion to help people with blood cancer?

I see every day how much a cancer diagnosis affects people. And I can see ways that each experience can be improved, many of which are simple things.

I know that we can improve things – that’s what I’m passionate about. In particular, the rural divide is so very frustrating. Being able to be heard at a high level will help to reduce that frustration.

How do you think the Taskforce might improve the lives of people with a blood cancer?

Providing great quality advice to a high level of government will ensure that the ‘on the ground’ clinicians will be better able to make the changes they know are needed to improve the care and experience of these patients.

What is your key piece of advice for someone living with a blood cancer?

Don’t be afraid to ask for help. Contact your local people – whether it’s your GP, a local cancer centre or community centre. There is a lot of help out there, but they won’t know about you unless you tell them!

The Leukaemia Foundation is always there to provide support to people living with a blood cancer – just call 1800 620 420 and ask to speak with your local Blood Cancer Support Coordinator.

Carmel is a Cancer Nurse Practitioner and Manager of the Wimmera Cancer Centre and the Vice President & Director Professional Practice for the Cancer Nurses Society of Australia.

Meet the Blood Cancer Taskforce: Dr Rishi Kotecha

Meet the Blood Cancer Taskforce: Dr Rishi Kotecha

Taskforce member Dr Rishi Kotecha
Taskforce member Dr Rishi Kotecha

The Blood Cancer Taskforce is well on its way to developing Australia’s first National Strategic Action Plan for Blood Cancer. We ask some of the Taskforce members what drives their passion for blood cancer.

Why did you want to be part of the Taskforce?

I am a paediatric haematologist and oncologist, so it was important to be on the Blood Cancer Taskforce to ensure appropriate representation within the taskforce for children and adolescents who are living with blood cancers.

What led to you become a part of the blood cancer community?

I am the clinical lead for paediatric leukaemia and lymphoma for Western Australia and co-lead the Leukaemia and Cancer Genetics paediatric preclinical research program for WA. I have become actively involved in the blood cancer community through these avenues.

What drives your passion to help people with blood cancer?

My passion stems from seeing the suffering that children with blood cancer and their families have to endure. This has driven me to ensure that we develop and have access to the latest clinical trials and innovative agents for children with blood cancer in Australia, such that we provide the best therapy to continually improve outcomes for patients.

How do you think the Taskforce might improve the lives of people with a blood cancer?

The Blood Cancer Taskforce will improve the lives of people with a blood cancer diagnosis through advocacy, education and acting as a representative body for all individuals living with blood cancer in Australia.

What is your key piece of advice for someone living with a blood cancer?

The most important advice would be to be aware of the resources that are available to help someone living with blood cancer. This is not only limited to medical resources but to be aware of support offered by philanthropic organisations such as the Leukaemia Foundation and local NGOs.

The Leukaemia Foundation is always there to provide support to people living with a blood cancer – just call 1800 620 420 and ask to speak with your local Blood Cancer Support Coordinator.

Rishi is a Consultant Paediatric Oncologist & Clinical Haematologist at the Perth Children’s Hospital.