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Combination treatment option for CLL patients now available through PBS

Combination treatment option for CLL patients now available through PBS

Monday 30 November, 2020

The Leukaemia Foundation has welcomed news that a new specialised combination treatment will be made available to some Australians living with Chronic Lymphocytic Leukaemia (CLL) through the Pharmaceutical Benefits Scheme (PBS) from tomorrow.

The Federal Minister for Health, The Hon. Greg Hunt MP, has announced that CLL patients unsuitable for standard chemotherapy-based treatments will now have access through the PBS to venetoclax in combination with obinutuzumab as a first line combination treatment option.

CLL is a slow-growing leukaemia affecting developing B-lymphocytes which is commonly diagnosed in people over the age of 60. These specialised white blood cells usually produce antibodies to protect against infection and disease, but instead undergo a malignant change to become leukaemic cells.

CLL can remain stable for months and years causing minimal impact on lifestyle and general health for many people diagnosed with this blood cancer, however in other cases, the leukaemic cells multiply uncontrollably, crowding the bone marrow and interfering with normal blood cell production, and these cases can require treatment soon after diagnosis.

While CLL is a relatively rare type of cancer, it is the most common type of leukaemia diagnosed in Australia. Currently, 1,875 Australians are diagnosed with CLL each year, however this figure is projected to reach 3,800 by 2035. The number of Australians losing their life to this blood cancer each year is also expected to more than triple during this time, from 306 Australians annually in 2020 to 1109 in 2035.[1]

Leukaemia Foundation General Manager of Blood Cancer Partnerships Tim Murphy said while conventional chemotherapy is often the starting point for CLL treatment, there has been a strong unmet need for access to additional first-line treatment options for this blood cancer, which the organisation has been advocating to change.

“The Leukaemia Foundation is committed to empowering Australians with blood cancer to better manage its impacts and live well after diagnosis, which is especially important for people with blood cancers like CLL that develop and progress slowly,” he said.

“Unfortunately some CLL patients are unfit for chemotherapy or struggle tolerating its side effects, and it is crucial that these Australians have an accessible and affordable alternate option available to them as they undertake what can be a lengthy blood cancer journey.

“As a daily orally-administered treatment which can for the most part be taken at home, venetoclax in combination with obinutuzumab is an effective and relatively unobtrusive option for these patients which avoids the debilitating side effects they would otherwise face with chemotherapy-based therapies, thereby improving their quality of life and simplifying access to the treatment they need.

“The Leukaemia Foundation has been advocating for access to innovative treatment options and we celebrate this result for Australians living with CLL.

“The Leukaemia Foundation is proud to stand beside all Australians living with blood cancer to be their voice and fight to get them access to the best therapies to treat their specific disease, wherever they live, as we work towards our shared vision to see zero lives lost to blood cancer by 2035.”

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 Blood Cancer Taskforce is a unique collaboration of Australia’s leading haematologists, researchers, patients and members of the blood cancer community who have spent the past year working with the Leukaemia Foundation to develop Australia’s first National Strategic Action Plan for Blood Cancer.

The Minister recently announced the release of the National Action Plan, which provides a blueprint to tackle key issues facing people affected by blood cancer today and into the future, and maps the path to achieve zero lives lost to blood cancer by 2035.

Mr Murphy said the release of the National Action Plan marked a major milestone for the blood cancer community which will set the national agenda around blood cancer for many years to come and ultimately improve outcomes and quality of life for patients.

“Breaking down barriers to patient access to therapies which are most effective and appropriate for them is a priority of the National Action Plan,” he said.

“We commend the Minister for listing this therapy on the PBS as another step in the right direction providing access to treatment for some Australians living with blood cancer, and we look forward to seeing further progress in this area into the future as the National Action Plan is implemented.”

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

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Latest grants announced in Australia-US blood cancer research co-funding partnership

Latest grants announced in Australia-US blood cancer research co-funding partnership

Sunday November 29, 2020

Two new research projects co-funded through a partnership between America’s The Leukemia & Lymphoma Society (LLS), Snowdome Foundation and Leukaemia Foundation will focus on acute myeloid leukaemia (AML) and myelodysplastic syndromes (MDS), seeking to improve understanding and treatment of these blood cancers.

Prof. Ravindra Majeti, Stanford University in the US, will join with Assoc. Prof. Dan Thomas, South Australian Health and Medical Research Institute (SAHMRI), to examine personalised targeting of AML mutations, while Prof. John Pimanda, University of NSW (UNSW), will explore how to achieve optimal responses to specific MDS and AML treatments. Each project will receive a three-year grant worth US$600,000.

2019 marked the first time the Snowdome and Leukaemia Foundations partnered with LLS to enable four Australian researchers access to funding through a special Australian round of the LLS Translational Research Program. The goal of the translational research was to reduce the time between laboratory findings and actual treatment. The announcement today of the 2019/20 grant recipients Majeti, Thomas and Pimanda brings together a total of six projects across Australia and the US, which have benefitted from this partnership to date.

Leukaemia Foundation General Manager of Blood Cancer Partnerships Tim Murphy said the organisation welcomed the opportunity to again unite with LLS and Snowdome Foundation to support leading Australian blood cancer researchers to undertake innovative work with a potential global impact.

“Accelerating research to achieve rapid advancements in blood cancer treatment is a key priority of the Leukaemia Foundation and by partnering with other organisations with the same goals, we can increase the depth of research we are able to fund,” he said.

“The more we know about specific blood cancers and best treatment options, the better our chances of curing and conquering this complex set of diseases, and the closer we are to realising our vision to see zero lives lost to blood cancer by 2035.”

Chief Scientific Officer of The Leukemia & Lymphoma Society Lee Greenberger, Ph.D. said: “It is a privilege for The Leukemia & Lymphoma Society to work with the Snowdome Foundation and the Leukaemia Foundation, as we join forces to bring better therapies to patients with blood cancer. This international collaboration between the most talented blood cancer scientists and clinicians in both Australia and the U.S., has already improved outcomes and will pave the way for a brighter future for these patients. We are at a pivotal time in blood cancer discovery and there has never been a more important time to work together towards our common goals.”

Snowdome CEO Kirstee Macbeth added: “We are extremely pleased to continue the collaboration between The Leukemia & Lymphoma Society, Snowdome Foundation and the Leukaemia Foundation to support Australian researchers in 2019/20. Australia is fortunate to have such talented blood cancer researchers however, crucial funding is needed to support their work. This partnership enables those investigators to facilitate further advances into blood cancer research, to increase the reach and ultimately, provide positive treatment outcomes for patients. Snowdome is passionate about making hope real for all blood cancer patients and we look forward to seeing the inspiring research proposals.”

Myelodysplastic syndromes (MDS) are a group of blood cancers that result in progressive failure of normal blood cell production and can transform into acute myeloid leukemia (AML).

AML is the name given to a group of leukaemias that develop in the myeloid cell line in the bone marrow. AML is characterised by overproduction of immature white blood cells, preventing normal blood cell formation by crowding the marrow and potentially spilling into the bloodstream and circulating around the body. AML is an aggressive blood cancer with a low average 5-year and long-term survival rates. Whilst most patients appear to achieve a remission with treatment, the majority eventually relapse.

The Leukemia & Lymphoma Society-Snowdome Foundation-Leukaemia Foundation Translational Research Program 2019/20 recipients and their respective research proposals to improve understanding of, and treatment for, MDS and AML are:

Prof. Ravindra Majeti (Stanford University) and Assoc. Prof. Dan Thomas (SAHMRI)

Prof. Majeti and Assoc. Prof. Thomas recently discovered a strong link between the metabolism of leukemia cells and common leukemia-causing mutations through modulation of a central metabolic factor called alpha ketoglutarate. They have since developed innovative methods that can assess the fate of alpha ketoglutarate-dependent reactions on DNA, histones, lipid production, and energy metabolism. This research proposes to apply these methods to characterize AML patient samples to inform a precision medicine therapy approach to treating the blood cancer. It also aims to investigate pharmacologic agents targeting the alpha ketoglutarate-dependent reactions. The objective of the research is to develop personalised medicine through metabolic targeting to deliver mutation-directed therapies to AML patients. Prof. Majeti is Professor of Medicine, Chief of the Division of Haematology, and Member of the Institute for Stem Cell Biology and Regenerative Medicine at the Stanford University School of Medicine. Assoc. Prof. Thomas is a clinical haematologist and blood cancer scientist. He has recently returned from working with Prof Majeti at Stanford University to lead his own Myeloid Metabolism Laboratory at SAHMRI. He has developed algorithms to predict and design mutation-specific therapeutics and novel stem cell assays to study leukemia stem cells.

This project is also kindly supported by a gift to the Leukaemia Foundation made in honour of John and Maureen Wilson.

Prof. John Pimanda (UNSW)

The most effective medicine to treat MDS, azacitidine, works in only half of MDS and associated AML patients who commence treatment. Over the past decade, Prof. Pimanda and his team have identified treatment alternatives for patients who have been proven, or have potential to be, non-responsive to azacitidine. The research proposes to discover new medicine that improves azacitidine efficacy by using a novel chemical-genome screen using a MDS cell line to identify specific genes that can make MDS cells more sensitive to the medicine. This information will then be used to identify molecular pathways amenable to pharmacological manipulation to achieve the same effect. Efficacy of medicine combinations in enhancing azacitidine activity can then be assessed, using azacytidine non-responder MDS cells to undertake pre-clinical testing in preparation for a future clinical trial. Prof. Pimanda heads a research group at the Prince of Wales Clinical School at UNSW Sydney. He is the founder of the NSW Myeloid Malignancy Network and one of Australia’s leading researchers in the field of MDS.

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About The Leukaemia Foundation:

The Leukaemia Foundation stands with Australia to help cure and conquer blood cancer – with care. Together we are attacking every blood cancer, from every direction, in every way we can. We stand beside every Australian to be their voice and their someone-to-turn-to, fighting to get them access to the best care. We also accelerate research that’s delivering rapid advancements in blood cancer diagnosis and treatments. Plus, we provide services and support that empower people living with any blood cancer to live well after diagnosis. You can learn more about the Leukaemia Foundation and blood cancer at leukaemia.org.au

About The Leukemia & Lymphoma Society

The Leukemia & Lymphoma Society® (LLS) is a global leader in the fight against cancer. The LLS mission: cure leukemia, lymphoma, multiple myeloma, and improve the quality of life of patients and their families. LLS funds lifesaving blood cancer research around the world, provides free information and support services, and is the voice for all blood cancer patients seeking access to quality, affordable, coordinated care. Founded in 1949 and headquartered in Rye Brook, NY, LLS has regional offices throughout the United States and Canada. To learn more, visit www.LLS.org. Patients should contact the LLS Information Resource Center at (800) 955-4572, Monday through Friday, 9 a.m. to 9 p.m., ET.

About the Snowdome Foundation

Snowdome was formed in 2010 with a mission to accelerate next-generation treatments for Australian blood cancer (myeloma, lymphoma and leukaemia) patients to help them live longer, better lives. It aims to accelerate access to innovative blood cancer treatments by channelling government and private philanthropic investments into ground breaking research, clinical trials, and personalised therapies. To date, Snowdome has raised more than $37 million and Snowdome support has assisted over 410 Australian blood cancer patients to gain access to early-phase clinical trials. Find out more at www.snowdome.org.au

New treatment now available through PBS for cutaneous T-cell lymphoma patients

New treatment now available through PBS for cutaneous T-cell lymphoma patients

Sunday November 1, 2020

The Leukaemia Foundation has welcomed news that a new specialised treatment will begin being available to some lymphoma patients through the Pharmaceutical Benefits Scheme (PBS) starting today.

The Federal Minister for Health, The Hon. Greg Hunt MP, has announced that Australians diagnosed with erythrodermic cutaneous T-cell lymphoma who have not responded to other treatments can now access the medication methoxsalen as part of treatment with extracorporeal photopheresis.

Minister Hunt said an estimated 75 patients may benefit from this listing each year.

The ECP treatment involves attaching a patient to a machine that removes some of their blood, separates the white blood cells and returns the red blood cells and platelets to the body. The white blood cells are mixed with methoxsalen, exposed to ultraviolet light, then administered to the patient, which can activate their immune system to fight the blood cancer.

Cutaneous T-cell lymphoma (CTCL) is a rare type of non-Hodgkin lymphoma that affects the skin and causes an accumulation of malignant T-cells in the skin, resulting in raised, rash-like or itchy patches of skin, skin lumps or ulcers and swollen lymph nodes. It can also involve the blood and other internal organs. Mycosis fungoides and Sézary syndrome are the two most common types of CTCL.

Leukaemia Foundation General Manager of People Living with Blood Cancer Kathryn Huntley said the Leukaemia Foundation is committed to empowering Australians living with lymphoma with access to the best information, support, treatment and care so they can manage its impacts and live well with their blood cancer.

“People living with blood cancer who are diagnosed with rare blood cancers like CTCL face significant hurdles in accessing new treatments in a timely manner and have significant treatment needs that are often unmet,” she said.

“The Leukaemia Foundation is grateful this medication and treatment will now be more readily accessible and affordable for Australians living with this specific rare lymphoma.”

The Leukaemia Foundation has been advocating for improved treatment options for CTCL, including for a PBS listing of mogamulizumab to treat relapsed or refractory CTCL – a medication which has been shown to prolong progression-free survival and reduce symptoms. The organisation also continues to advocate for access to ECP for blood cancer patients experiencing Graft Versus Host Disease.

“The Leukaemia Foundation is proud to stand beside Australians living with blood cancer to be their voice and fight to get them access to the best therapies to treat their specific disease, wherever they live, as we work towards our vision to see zero lives lost to blood cancer by 2035,” Ms Huntley said.

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 Blood Cancer Taskforce is a unique collaboration of Australia’s leading haematologists, researchers, patients and members of the blood cancer community who have spent the past year working with the Leukaemia Foundation to develop Australia’s first National Strategic Action Plan for Blood Cancer.

Last month the Minister announced the release of the National Action Plan, which provides a blueprint to tackle key issues facing people affected by blood cancer today and into the future, and maps the path to achieve zero lives lost to blood cancer by 2035.

Ms Huntley said the release of the National Action Plan marked a major milestone for the blood cancer community which will set the national agenda around blood cancer for many years to come and ultimately improve outcomes for patients with rare blood cancers like CTCL.

“Enabling access to novel and specialised therapies, including breaking down roadblocks to patient access to these therapies, is a key priority of the National Action Plan,” Ms Huntley said.

“This announcement by the Minister is a step in the right direction to remove these roadblocks for some Australians living with blood cancer, and we look forward to seeing further progress in this area into the future as the National Action Plan is implemented.”

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

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Leukaemia Foundation and HSANZ PhD scholarships to improve outcomes for people with AML and MPN

Leukaemia Foundation and HSANZ PhD scholarships to improve outcomes for people with AML and MPN

Thursday October 15, 2020

The Leukaemia Foundation and the Haematology Society of Australia and New Zealand (HSANZ) have today proudly announced the latest round of PhD Scholarships, supporting research to improve outcomes for people living with blood cancer.

Basit Salik, Dr Jamie Kuzich and Dr Julian Grabek have been named the successful recipients of the 2021 round of PhD Scholarships to support their work on projects to improve understanding and treatment for Acute Myeloid Leukaemia (AML) and Myeloproliferative Neoplasms (MPN).

AML is an aggressive blood cancer with an average 5-year survival rate of 28% and low rates of long-term survival. Whilst most patients appear to achieve a remission with current treatment, the majority eventually relapse.

Currently 1,122 people are diagnosed with AML each year in Australia and sadly, 1,111 Australians lose their life to the disease annually. Alarmingly, these figures are projected to grow to reach 3,722 people diagnosed per year and 2,847 dying from the disease each year by 2035.

MPNs occur when bone marrow stem cells grow and reproduce abnormally. In patients with MPN, abnormal stem cells produce excess numbers of one or more types of blood cells (red cells, white cells and/or platelets). These abnormal cells cannot function properly and can cause serious health problems unless properly treated and controlled.

People with MPN have an increased risk of the disease transforming to an acute leukaemia depending on the subtype – essential thrombocythaemia (4%) Polycythaemia vera (9%) and myelofibrosis (21%).

Leukaemia Foundation Acting CEO Alex Struthers said accelerating research and providing access to best practice treatments are important foci for the Leukaemia Foundation and were identified as key priority areas in the organisation’s State of the Nation: Blood Cancer in Australia report and the recently-released National Strategic Action Plan for Blood Cancer.

“Research is a crucial tool to improve blood cancer survival rates and ensure Australians can live well with their diagnosis, and while these reports show us that significant gains have been made in this area, they also show is that there is more work to be done to reduce mortality and associated economic costs,” she said.

“With more than 5,600 Australians losing their life to a blood cancer each year and more than 186,000 people expected to die from blood cancers by 2035, ensuring increased and sustained investment in research is more important than ever to drive down these figures and save lives.

“Over the past two decades, the Leukaemia Foundation has proudly invested more than $54.5 million into research, including supporting over 370 researchers across 290 research projects, through PhD scholarships and research grants, at over 50 hospitals, research institutes and universities.

“On behalf of the Leukaemia Foundation, I sincerely congratulate Basit Salik, Dr Jamie Kuzich and Dr Julian Grabek and we look forward to seeing their research translate into improved results for people in our community living with AML and MPN.

“The more we all know about blood cancer and best treatment options, the better our chances of curing and conquering this complex set of diseases, and the closer we are to realising our united vision to see zero lives lost to blood cancer by 2035.”

The Leukaemia Foundation has been supporting Australian blood cancer research and the careers of promising scientists and clinicians for over 20 years. These PhD Scholarships, valued at $130,000 each, are part of the Leukaemia Foundation’s National Research Program which has invested more than $54.5 million into research since 2000.

The Leukaemia Foundation is proud to partner with HSANZ – an organisation which promotes excellence, advocates for improvements in the care of patients with blood cancer and supports blood cancer research. Together the Leukaemia Foundation and HSANZ aim to help more medical and science graduates pursue a research career in blood cancer through co-funded PhD scholarships.

The Leukaemia Foundation thanks Brydens Lawyers and the Bourne Foundation for their generous contribution and support to the PhD Scholarship program.

The Leukaemia Foundation is committed to funding research the drives rapid advancements in treatments, diagnostics and novel therapies and gives Australians access to the latest treatments through clinical trials. More on the Leukaemia Foundation’s National Research Program here.

The Leukaemia Foundation receives no ongoing government funding, and the National Research Program relies on the continued support of generous donation. To find out how to support the Leukaemia Foundation’s National Research Program call 1800 620 420.

“Donations allow us to continue to invest in Australian blood cancer research and to support the next generation of researchers, driving this type of innovative research for better treatments, better care and ultimately a cure for blood cancer,” Ms Struthers said.

Learn more about the successful research projects here.

Find out more about AML here, more about MPN here, or subscribe to the Leukaemia Foundation’s disease-specific newsletters here.

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About The Leukaemia Foundation:

The Leukaemia Foundation stands with Australia to help cure and conquer blood cancer – with care. Together we are attacking every blood cancer, from every direction, in every way we can. We stand beside every Australian to be their voice and their someone-to-turn-to, fighting to get them access to the best care. We also accelerate research that’s delivering rapid advancements in blood cancer diagnosis and treatments. Plus, we provide services and support that empower people living with any blood cancer to live well after diagnosis. You can learn more about the Leukaemia Foundation and blood cancer at leukaemia.org.au.

About HSANZ:

The Haematology Society of Australia and New Zealand aims to promote, foster and develop the discipline of haematology in all its aspects and particularly provides support and advocacy for research in haematology. More about HSANZ here.

Osher Gunsberg shines a light on blood cancer and hosts Australia’s first virtual Light the Night event

Osher Gunsberg shines a light on blood cancer and hosts Australia’s first virtual Light the Night event

Tuesday September 30, 2020

Osher Gunsberg has today been announced as host of the Leukaemia Foundation’s first virtual Light the Night event, with the popular Australian media personality set to guide tens of thousands of people across the country through a special evening of blood cancer awareness this October.

For 13 years, close to 400,000 Australians affected by blood cancer have gathered in cities and towns nationwide for the annual Light the Night event, to stand united in support for each other and a shared hope for a future free from blood cancer.

Due to COVID-19, this year’s Light the Night has been reimagined as a virtual event, with registered participants now able to join with Osher and the national blood cancer community when they stream the official ceremony online on Saturday 10 October at 8pm local time.

Light the Night host Osher Gunsberg said he was proud to be supporting the Leukaemia Foundation and to give back to the organisation that supported his mum during her battle with blood cancer.

Osher’s mother battled the blood cancer myeloma also known as multiple myeloma, for several years and sadly passed from the disease in 2018.

When my mum was battling myeloma, a highlight of her week was the support from her Sunday walks with the Leukaemia Foundation’s [volunteers]. She felt so much support, so much solidarity and was full of gratitude,” Osher said.

“Not a day goes by that I don’t miss my mum, however I’m grateful for the lessons she has taught me during that time.”

Every day, 47 Australians are diagnosed with a blood cancer including myeloma, lymphoma and leukaemia. The Leukaemia Foundation’s latest State of the Nation: Blood Cancer in Australia report confirms that in just 15 years, by 2035, this number will more than double to 100 people per day.

Leukaemia Foundation General Manager of Supporters Rachael Lance said the Leukaemia Foundation warmly welcomes Osher Gunsberg as this year’s Light the Night host and is encouraging all Australians touched by blood cancer to register now and join the organisation for this very special event.

“It will be one national moment for the blood cancer community to come together – regardless of where you live, or your connection to blood cancer. Everyone will be able to join in and be part of this shared experience of support, hope and unity,” Ms Lance said.

“We Light the Night to give hope to everyone touched by blood cancer now, and to cure and conquer blood cancer into the future.”

Light the Night is free to attend and all fundraising through the event provides precious relief for families affected by blood cancer as well as supporting the Leukaemia Foundation to work towards achieving zero lives lost to blood cancer by 2035.

Join Osher Gunsberg and other Australians affected by blood cancer at this year’s Light the Night event.

Official Lanterns can still be secured by new participants up to Thursday, 1st October so they can be delivered in time for the night.

To register or for more information, visit lightthenight.org.au or phone 1800 500 088.  

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

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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.

Support Australians to survive blood cancer with simple stem cell donation

Support Australians to survive blood cancer with simple stem cell donation

Saturday September 19, 2020

The Leukaemia Foundation is calling for Australians to mark World Marrow Donor Day by signing up to donate their stem cells in a show of support for 600 Australians living with blood cancer whose lives depend on an allogeneic stem cell transplant every year.

Every 31 minutes, someone in Australia is diagnosed with blood cancer, and for many, a blood stem cell transplant from a complete stranger is their only hope of surviving their diagnosis. But thanks to a simple test, the chance for anyone to save the life of an Australian living with this disease couldn’t be easier.

Last year, the Australian Donor Registry launched a ‘Strength to Give’ campaign, to encourage young people aged 18-35 from a diverse group of ethnic backgrounds to register to become an Australian stem cell donor by using a simple cheek swab to check whether their tissue type matches with someone in need of stem cells or bone marrow.

As the successful campaign reignites once more, the Leukaemia Foundation is again joining forces with the Registry to boost donor numbers, with the latest push aiming to secure a further 6000 Australians to step forward and swab a cheek in a bid to add their name to the registry and save a life.

More than 70% of Australians living with a blood cancer requiring a stem cell transplant must look outside their own family to find a donor, leaving them reliant on Australians to be registered to donate, and looking to the Australian Donor Registry to source a suitable match.

But with less than 5 per cent of registered donors considered ideal, the Registry often can’t meet these needs, forcing a search for potential donors overseas for this vital treatment option. Sadly, in cases where the patient is or identifies as being an Indigenous Australian or hails from a community underrepresented in international registries, a suitable donor can’t be found.

Leukaemia Foundation Acting CEO Alex Struthers said World Marrow Donor Day was not only a chance to celebrate and thank blood stem cell donors worldwide, but also to draw awareness to the reality that access – or no access – to donated stem cells acts as a crucial factor determining survival for hundreds of Australians fighting blood cancer.

“The Leukaemia Foundation is focused on breaking down barriers to ensure all Australians affected by blood cancer have access to the best treatment, information and supportive care, because we know these barriers impact survival,” she said.

“It is simple – the more registered Australian stem cell donors there are, the greater the chance of survival for Australians living with blood cancer, and the closer we all step to seeing zero lives lost to blood cancer by 2035.”

The Australian Donor Registry is especially interested in registering particular members of the community. Younger donors result in better outcomes for patients, so 18-35 year olds are encouraged to register to increase chances of finding the best possible match. Additionally, young men are also considered particularly important donors – as they often weigh more, they literally have more to give. Ethnic diversity is also important as patients are more likely to find a match with a donor from the same ethnic background.

To register to become a stem cell donor, simply visit https://lf.strengthtogive.org.au/ and register your details and a swab test will be sent to you. Once this is returned, you will be placed on the Australian Bone Marrow Donor Registry.

For more information on stem cell transplants, visit https://www.leukaemia.org.au/disease-information/transplants/ or visit the Leukaemia Foundation’s Blood Cancer Information YouTube Channel.

END

What is a Blood Stem Cell Transplant?

  • Blood stem cell transplant is also known as bone marrow transplant. This treatment may be recommended for people with blood cancers such as leukaemia, myeloma or lymphoma.
  • A stem cell transplant replaces blood-forming cells in your bone marrow (including cancer cells) that have been destroyed by chemotherapy or radiation therapy with healthy stem cells. These cells then develop into new bone marrow and produce healthy blood cells.
  • A blood stem cell transplant can use a patient’s own stem cells (autologous transplantation) or stem cells from a donor (allogeneic transplantation). This can be a complex decision that will depend on several factors, such as your age, the type of cancer you have, the health of your existing bone marrow and your overall health, and any previous chemotherapy treatments.

Who is the Australian Donor Registry?

  • The Australian Donor Registry is an independent charity, part-funded by the Australian Government to provide hospitals with the ability to search for matching stem cells from unrelated volunteer donors from Australia and around the world.
  • The chances of finding a match for Australians in need depends on the characteristics of the donors. To find the best possible match, patients need donors from an ethnic background similar to their own. Some Australians will find a matching donor in countries like the UK, US or Europe; for others, a matching donor will only be found in Australia. For more information, please visit https://www.abmdr.org.au
How do I donate my stem cells?

END

Lymphoma rates jump 37% in past decade, with further significant increase still to come

Lymphoma rates jump 37% in past decade, with further significant increase still to come

Tuesday September 15, 2020

Today is World Lymphoma Awareness Day and the Leukaemia Foundation is highlighting the rising incidence of one of Australia’s most common blood cancers.

Over the past 10 years, incidence of lymphoma have risen by 37%, leading to close to 7000 people being diagnosed with this blood cancer each year in 2020[1]. Sadly, projections also show the number of Australians diagnosed with a lymphoma will jump a further 147 per cent by 2035 – making for an extra 10,000 Australians being told they have lymphoma every year[2].

Leukaemia Foundation Acting CEO Alex Struthers said with more people being diagnosed with lymphoma every year, it is a priority for the Leukaemia Foundation to ensure that each and every person will have access to the right treatment, care and information they need to survive their blood cancer and live well with their diagnosis.

“We welcome improved diagnostics to inform new targeted treatment approaches and we strongly support emergence of innovative therapies, like CAR T-cell therapy, which is now available on the Pharmaceutical Benefits Scheme (PBS) for some lymphoma patients – but not all,” Ms Struthers said.

“We need better access to genetic testing and more investment in research and clinical trials in Australia to help make new cellular and immunotherapies more accessible to all people living with any one the diverse set of lymphoma cancers.”

Leukaemia Foundation research shows that less than 30% of Australians living with blood cancer have access to genetic and genomic testing to inform their diagnosis and treatment planning. It also shows that less than 20% of Australians living with this disease have participated in a clinical trial, and only 1 in 5 who want to enroll in a clinical trial have access to one[3].

Improving access to diagnostics, clinical trials and new therapies forms part of what the Blood Cancer Taskforce has been considering in their development of the first National Strategic Action Plan for Blood Cancer, due for release soon.

The Blood Cancer Taskforce – a unique collaboration of some of the country’s top blood cancer experts and leaders – has now delivered the National Action Plan to the Federal Government and will continue to work alongside the Government to support the launch of the Plan soon.

“The National Action Plan will be a blueprint to not only save lives, but to improve these statistics and bridge these gaps to better meet the diagnosis and treatment needs of every Australian who is told they have a blood cancer,” Ms Struthers said.

The Leukaemia Foundation will today launch two webinars to help increase awareness, celebrate breakthroughs in treatment and acknowledge what still needs to be done to conquer the disease.

Speakers will include Dr Glenn Kennedy, Executive Director of Cancer Services at the Royal Brisbane and Women’s Hospital, who will present on CAR-T therapy including an overview of CAR-T and its relevance to the lymphoma patient population.

Physiotherapist and lymphoma survivor Ms Julie Allen will also present from a patient perspective and talk about the importance of exercise as treatment for lymphoma patients.

Both webinars can be accessed here.

For more information about lymphoma, and to register for the Leukaemia Foundation’s disease specific newsletter Lymphoma News, go to https://www.leukaemia.org.au/disease-information/lymphomas/

– ENDS –

What is Lymphoma?

  • There are more than 50 different sub-types of lymphoma, divided into two primary disease groups – Hodgkin lymphoma and Non-Hodgkin lymphoma.
  • Lymphoma is the general term for cancers that develop in the lymphatic system. The lymphatic system is made up of a vast network of vessels (similar to blood vessels) that branch out into all the tissues of the body.
  • These vessels contain lymph, a colourless watery fluid that carries lymphocytes, which are specialised white blood cells that fight infection.
  • There are two types of lymphocytes, B-lymphocytes and T-lymphocytes (also called B-cells and T-cells). These cells protect us by making antibodies and destroying harmful microorganisms such as bacteria and viruses.
  • Lymphoma originates in developing B-lymphocytes and T-lymphocytes, which have undergone a malignant change. This means that they multiply without any proper order, forming tumours which are collections of cancer cells. These tumours cause swelling in the lymph nodes and other parts of the body.
  • Over time, malignant lymphocytes (called lymphoma cells) crowd out normal lymphocytes and eventually the immune system becomes weakened and can no longer function properly.

Lymphoma incidence, prevalence and mortality

  • Every day, 19 people are diagnosed with lymphoma in Australia and sadly 4 people lose their life from the disease[4]
  • Currently 6,932 are diagnosed with lymphoma each year in Australia, and more than 1,731 Australians lose their life to lymphoma each year[5].
  • The average 5-year survival rate for people diagnosed with lymphoma is 76%[6].
  • The number of Australians diagnosed with lymphoma annually is expected to more than double to reach 17,171 people per year by 2035[7].
  • The number of Australians losing their life to lymphoma each year is also projected to more than double to reach 5,082 people per year by 2035[8].

Leukaemia Foundation advocacy: Lymphoma
Medicine which the Leukaemia Foundation has actively advocated for increased access to in the past year includes:

  • Ibrutinib – in both capsule and tablet form as first-line treatment of patients with small lymphocytic lymphoma
  • Polatuzumab vedotin – as treatment for relapsed or refractory diffuse large B-cell lymphoma patients who are ineligible for stem cell transplantation.
  • Acalabrutinib – for treatment of patients with relapsed or refractory small lymphocytic lymphoma not suited for treatment or second-line treatment.
  • Acalabrutinib – for use as monotherapy or in combination with obinutuzumab, for the first-line treatment of patients with small lymphocytic lymphoma who harbour a 17p deletion.
  • Pembrolizumab – as a treatment for patients with relapsed or refractory primary mediastinal large B-cell lymphoma
  • Venetoclax – as a combination treatment with obinutuzumab for the first-line treatment of patients with CLL who have coexisting conditions and are unsuitable for fludarabine based chemoimmunotherapy.
  • Mogamulizumab – as a treatment for relapsed or refractory cutaneous T cell lymphoma for the treatment of patients with relapsed or refractory CTCL following at least one prior systemic treatment for this condition.

Leukaemia Foundation National Research Program: Lymphoma
A number of clinical trials, research grants and PhD scholarships are funded under the Leukaemia Foundation’s lymphoma program with the aim to better understand the biology and genetics of the disease, develop new and improved treatments and treatment protocols and improving quality of life for Australians living with lymphoma. These projects include:

  • Two international clinical trials funded through the Leukaemia Foundation’s Trials Enabling Program in collaboration with the Australasian Leukaemia and Lymphoma Group (ALLG):
    • Hodgkin Lymphoma trial, led in Australia by Professor Mark Hertzberg, in collaboration with the German High-Grade Lymphoma Group – looking at optimisation for first -line treatment of advanced stage Hodgkin lymphoma.
    • Follicular Lymphoma trial, led in Australia by Professor Judith Trotman, in collaboration with the UK Liverpool Trials group – looking at using PET scans to determine the response to therapy and inform treatment duration in patients with previously untreated high tumour burden follicular lymphoma
  • A cancer genomics clinical trial designed to bring precision medicine to blood cancer patients who have exhausted all other therapy options, with the first phase targeting high grade B-cell lymphoma patients.
  • A series of projects across the lymphoma diagnosis and treatment spectrum through the Leukaemia Foundation’s PhD scholarship program in collaboration with the Haematology Society of Australia and New Zealand (HSANZ) and the Strategic Ecosystem Research Partnership program:
    • Development of a new class of small ‘drug-like’ molecules that kill B-cell blood cancers
    • Development of a new genetic, immune and clinical prognostic score to assess the best treatment pathway and supporting informed decision making for follicular lymphoma patients,
    • Epigenetic pre-treatment therapy to sensitise diffuse large B-cell lymphoma cells to subsequent chemotherapy.
    • Investigating the mechanism by which the tumour suppressor gene TP53 prevents the development of Leukaemia and Lymphoma
    • A series of projects and clinical trials aimed at developing new treatment approaches for blood cancers, and the prevention and treatment of Graft Versus Host Disease through the Centre for Blood Transplant and Cell Therapy.
    • Testing clinical efficiency of CAR T-cells in the treatment of diffuse large B-cell lymphoma.

Strap on your runners to support Australians with blood cancer as Blackmores Sydney Running Festival goes virtual

Strap on your runners to support Australians with blood cancer as Blackmores Sydney Running Festival goes virtual

Monday September 14, 2020

The Leukaemia Foundation will once again be headline charity partner for this year’s Blackmores Sydney Running Festival as the iconic event is reimagined as an entirely virtual festival for the first time.

While runners usually come together every September for a rare opportunity to run across the iconic Sydney Harbour Bridge and finish at the Sydney Opera House, postponement of this year’s physical event means those hoping to participate instead have the chance to run their own race wherever they are and whenever they wish, and even to race against themselves.

The virtual Blackmores Sydney Running Festival launches September 20 and runs until November 8, giving participants seven weeks to compete in their chosen event as many times as they like. Participants can use the festival’s official training guides to help them achieve their best time and record their results with the help of an app or their own fitness tracking device – all from the safety of their own home or local area.

Leukaemia Foundation Acting CEO Alex Struthers said this year’s festival gave everyone a unique opportunity to strap on their running shoes wherever they are while supporting families affected by blood cancer, including people living interstate, regionally and rurally who wouldn’t usually be able to participate in a Sydney-based event.

“We know regional blood cancer patients aren’t receiving the crucial diagnostics and specialist care they need when they need it and are more likely to face barriers in getting this care, and the Leukaemia Foundation is focused on breaking down these barriers,” she said.

“So it’s especially fitting that we are a proud headline charity for a festival that has this year transformed into a great opportunity for more Australians to participate, regardless of where they live, without travelling to Sydney and while staying safe in the current climate.

“By signing up for the Blackmores Sydney Running Festival and running for the Leukaemia Foundation, you are making sure that every Australian facing blood cancer will have someone to turn to every step of the way to access the right information, the best treatment and supportive care, no matter where they are.”

The number of Australians diagnosed with a blood cancer has jumped 38% in the past decade alone. Today, more than 17,300 people are expected to be diagnosed with the disease this year and sadly, more than 5600 Australians will lose their life, an increase of 27% on 2010[1].

Projections show that while 110,000 Australians are living with blood cancer today, that number will more than double to 275,000 by 2035. Blood cancer is also expected to claim the lives of 186,000 Australians in this time[2].

“Blood cancer is one of the most common, costly and fatal cancers in Australia. There are no screening programs available for blood cancers, and there is no way to prevent blood cancer through lifestyle change,” Ms Struthers said.

“As we strive to help all Australian families affected by blood cancer, we are excited to again partner with the Blackmores Sydney Running Festival – a partnership which will help meet the growing demand on vital patient services in the post-COVID-19 environment and help us reach our goal to see zero lives lost to blood cancer by 2035.

“Staying active and connected has never been as important as right now, so whether you’re a walker, casual runner or ready for some competition running there’s a virtual event for you, and that means there’s an opportunity to play your part in raising essential funds to help save lives.”

The Blackmores Sydney Running Festival was first held in 2000 using the Marathon route of the Sydney Olympics. Since then, thousands of participants have walked, jogged or run in the steps of those Olympians in their own quest for fun and fitness, and funds for charities. While the route may have changed for this year’s virtual event, the festival continues to cater for all fitness levels with options to take part in a full or half marathon, a 10km run or the family friendly 3.5km fun run.

Find out more information about this year’s virtual event at https://sydneyrunningfestival.com.au/. To register to run virtually to raise funds for the Leukaemia Foundation, go to https://fundraise.leukaemia.org.au/register/blackmores-sydney-running-festival

[1] https://www.aihw.gov.au/reports/cancer/cancer-data-in-australia/contents/summary

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

– ENDS –

Leukaemia Foundation to host virtual seminars for National MPN Awareness Day today

Leukaemia Foundation to host virtual seminars for National MPN Awareness Day today

Thursday September 10, 2020

Australians living with the rare blood cancer Myeloproliferative Neoplasms (MPN) will today be able to connect through a new virtual seminar being hosted by the Leukaemia Foundation as part of National MPN Awareness Day.

Working in partnership with MPN Alliance Australia, the free live seminar will include four speakers from Monash University, The University of Western Australia, Cancer Council Queensland and a patient advocate from Sydney.

Leukaemia Foundation Acting CEO Alex Struthers encouraged those Australians and their families living with MPN to sign up to the free live event and unite with other Australians experiencing the blood disorder.

“This event will be streamed live, enabling attendees to gather together virtually to hear some of the latest insights into the disease to better inform their diagnosis and treatment, and break down some of the barriers they may face in accessing this information,” Ms Struthers said.

Myeloproliferative neoplasms (MPN) are cancers that start in the bone marrow, where blood cells are made. In MPN, the bone marrow makes too many of one or more types of blood cells (red blood cells, white blood cells and/or platelets). These cells change the thickness of the blood. They also crowd the bone marrow and then it can’t make enough healthy blood cells.

There are seven types of MPN, diagnosed using blood tests and a bone marrow biopsy. Some forms can transform into other types of MPN or into acute myeloid leukaemia (AML) – one of Australia’s deadliest blood cancers with a  five-year survival rate of just 28 per cent1.

The Leukaemia Foundation has invested nearly $700,000 into research of MPNs as part of its $50 million National Research Program and continues to advocate and support all Australians living with more than 120 different blood cancers across the nation.

Currently, the Leukaemia Foundation is funding the research of Dr Liesl Butler – a junior haematologist based at the Centre for Blood Diseases at Monash University in Melbourne. Find out more about Dr Butler’s research here.

Virtual Seminar Details

Date: September 10, 2020

Time: 12 noon AEST

Where: Online via Microsoft Teams Live

Register here

Speakers:

Prof. Andrew Perkins from Monash University. Topic: Current clinical and research interests – rundown on how diagnosis and treatment is progressing and emerging therapies.

Prof. Wendy Erber from University of Western Australia. Topic: Why do Myeloproliferative Neoplasms Progress to Fibrosis?.

Prof. Peter Baade from Cancer Council QLD. Topic: How does the burden of MPN in Australia vary by where people live.

Helen Williams from Sydney. Helen is newly diagnosed with PV and will be discussing her experience from a patient perspective.

More about MPN

Myeloproliferative neoplasms (MPN) are a rare group of blood cancers.

The MPN Polycythaemia vera is diagnosed in an estimated 250 Australians each year, essential thrombocythaemia around 200 and myelofibrosis an estimated 150. Rarer sub types are diagnosed in less than 50 Australians each year.

MPN is more commonly diagnosed in people over 50, although it can rarely occur in younger people, every rarely in in children.

Many people have no symptoms when they are first diagnosed with an MPN and the disease is often picked up accidently during a routine blood test or physical examination.

When symptoms do occur, the develop gradually over time and can include headaches, blurred vision, fatigue, weakness. Dizziness, itchiness, night sweats and raised blood pressure.

Most people with an MPN have no family history of the disease.

Find out more about MPN here.

– ENDS –