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Decisions from the March PBAC meeting for CLL/SLL

Decisions from the March PBAC meeting for CLL/SLL

Acalabrutinib (Calquence®) will be added to the therapy arsenal for CLL and SLL after receiving a positive recommendation by the Pharmaceutical Benefits Advisory Committee (PBAC) at its March 2020 meeting.

Two treatments for SLL and/or CLL were considered at the meeting for listing on the Pharmaceutical Benefits Scheme (PBS). Venetoclax (Venclexta®) was given a first-time decision not to recommend in a particular indication and acalabrutinib received a positive recommendation.

Acalabrutinib was recommended for the treatment of patients with relapsed or refractory CLL/SLL who are not suitable for treatment or retreatment with a purine analogue (also known as second line treatment of CLL/SLL). The PBAC considered that acalabrutinib may provide a different toxicity profile compared to ibrutinib for some patients.

In its decision not to recommend venetoclax in combination with obinutuzumab for the first-line treatment of CLL patients with coexisting conditions and who are unsuitable for fludarabine-based chemoimmunotherapy, the PBAC accepted that venetoclax + obinutuzumab was clinically superior to current first-line therapy for CLL in delaying progression. However, the cost effectiveness ratio and financial estimates needed to be reviewed.

When the PBAC meets again, in July 2020, it will consider new submissions for acalabrutinib for CLL/SLL patients with a 17p deletion, and a resubmission for venetoclax in combination with obinutuzumab for patients with CLL.

In submissions to the PBAC in February 2020, in support of the availability of new treatment options for this blood cancer, the Leukaemia Foundation included consumer comments, sourced from our disease-specific community groups on Facebook. Australia’s patient population for these yet-to-be-listed therapies is small and we received two consumer responses in relation to acalabrutinib and venetoclax.

The Leukaemia Foundation also contacted the pharmaceutical sponsors who made the submissions, AstraZeneca (acalabrutinib) and AbbVie (venetoclax), for information to help inform our consumer comments. This included details about the target patient population/subgroup, current treatment pathways, how the medicine works, its efficacy relative to other medicines available to treat CLL/SLL, how the medicine is administered, side-effects and their management, and quality of life impacts.

In the Leukaemia Foundation’s submissions, CEO, Bill Petch, urged the PBAC to recommend the treatments be listed on the PBS for eligible patients, “given the high unmet needs of people living with CLL who are unable to tolerate the current standard of care”.

“People want choices,” he said.

“They want access to a range of treatments to help them fight the disease with fewer side-effects, to help them not only to survive but also to live well, and to provide them with greater options for remission and ultimately improved quality of life.

“Our priority is to ensure all Australians living with blood cancer have timely access to the best therapies and treatments available, to improve time spent in remission, survival and quality of life,” said Mr Petch.

Acalabrutinib for r/r CLL or SLL

AstraZeneca sought a listing of acalabrutinib for people with r/r CLL or SLL who were unsuitable for treatment with a purine analogue (e.g. fludarabine) and who have had a least one prior therapy for CLL/SLL.

Based on summary information on the ASCEND clinical trial, use of acalabrutinib versus current standard of care demonstrated a statistically significant reduction in the risk of death or disease progression for patients – including those with high risk features such as 17p deletion, 11q deletion, TP53 mutation, and unmutated IGHV. The usual dose (of acalabrutinib) is a capsule taken twice daily and which can be taken from home, which is convenient for patients and their families.

Bruce Wood, from South Australia, who is living with CLL provided the following input to the PBAC for its consideration of this submission:

I have been taking acalabrutinib for 6 weeks now via a clinical trial at Flinders Medical Centre for CLL. 

My white cell count is rapidly decreasing and my spleen has reduced from 21cm below my lower rib to a normal size. It is a very effective drug with minimal side effects. 

“If it was available to the general public as frontline treatment for CLL it would make a huge improvement to current treatment regimes,” said Bruce.

Venetoclax/obinutuzumab combination as a first-line treatment

AbbVie had requested a streamlined listing of venetoclax in combination with obinutuzumab as first-line treatment for people with CLL with coexisting conditions and who are unsuitable for fludarabine-based chemotherapy such as FCR (fludarabine, cyclophosphamide and rituximab). The venetoclax/obinutuzumab regimen is administered orally, on a daily basis, and can be taken at home after an initial five-week treatment phase where the patient is closely monitored.

Patients who aren’t eligible for intensive chemoimmunotherapy, such as FCR, are currently treated with obinutuzumab in combination with chlorambucil.

Based on summary clinical trial information, AbbVie believes venetoclax in combination with obinutuzumab to be superior to the current standard of care (obintuzumab combined with chlorambucil) for these patients.

A Victorian patient with CLL responded to our request for input on this submission, saying they would be prescribed venetoclax combined with obinutuzumab when they started treatment.

Government announces incentive to help meet shortfall in charitable donations due to COVID-19

Government announces incentive to help meet shortfall in charitable donations due to COVID-19

Thursday,  7 May 2020

The Leukaemia Foundation has today welcomed Prime Minister Scott Morrison’s commitment to help boost charitable giving in the wake of the COVID-19 pandemic.

The Federal Government said research showed donations to charities had decreased by 7.1 percent in 2020, and was predicted to decrease a further 11.9 percent in 2021, due to the outbreak of the disease.

Leukaemia Foundation CEO Bill Petch said the organisation is preparing for a significant shortfall in fundraising and is therefore urging all Australian philanthropists to take advantage of the incentive.

In a statement released today, Assistant Minister for Finance, Charities and Electoral Matters Zed Sesilja said the Government would amend guidelines for public and private ancillary funds to encourage more charitable giving during this time of need.

The Government announcement would provide incentive for those with ancillary funds to increase their compulsory minimum contribution to charities in this time of increased demand, and then receive credit on future compulsory donations in coming years.

“The credit — equal to half the percentage points by which the distributions exceed the minimum — may be used to reduce the minimum distribution by up to one percentage point in 2021-22 and future financial years until the credit is exhausted,” Senator Seselja said.

“We know these are difficult times for everyone. Like most charities the Leukaemia Foundation is dealing with a decrease in fundraising dollars, however our focus remains on supporting the needs of people living with blood cancer,” Mr Petch said.

“Australians living with blood cancer are already struggling with the dangers of COVID-19. They know contracting the disease could not only be dangerous, but tragic. Now more than ever they need our support,” Mr Petch said.

Recent research also suggests patients with blood cancers are also at a higher risk of death if they contract COVID-19 (6-11 per cent). The fatality rate in people living with blood cancer with COVID-19 is also the highest amongst all cancer patients (33 per cent)2

“Philanthropy has always been vital in helping people living with blood cancer not only survive, but live a good quality of life. We are so grateful for the financial contribution from generous philanthropists who help meet urgent needs today, and the growing need for support into the future.”

“In coming years we’ll continue to face a growing demand for our services as our research confirms the number of Australians living with blood cancer will more than double in the next 15 years.”

The recently released State of the Nation: Blood Cancer in Australia report shows that 41 Australians are currently diagnosed with blood cancer every day. Sadly 20 people will lose their life to the disease. By 2035, that number will rise to 100 people diagnosed each day and over 40 people losing their life to blood cancer, each day.

Currently 41 Australians will be told they have blood cancer and 110,000 Australians are living with the disease. According to the report, these numbers are also projected to more than double by 2035 to 100 people diagnosed with blood cancer every day and more than 275,000 living with the disease.

– ENDS –

Precision treatment for all young Australians living with blood cancer

Precision treatment for all young Australians living with blood cancer

Friday, 1 May 2020

The Leukaemia Foundation has welcomed news that Australian children and young adults will have greater access to precision cancer treatment following a $67 million additional funding injection for a world-leading research and clinical program.

Federal Minister for Health, The Hon. Greg Hunt MP, yesterday announced the joint investment from the Federal Government and the Minderoo Foundation to extend and expand the Zero Childhood Cancer National Precision Medicine Program with a view to ensuring all Australian children and young adults diagnosed with cancer will have access to genomically-guided, precision treatments.

The Zero Childhood Cancer program is the first large-scale Australian study aiming to provide personalised treatments for kids based on in-depth knowledge of their individual cancer.

The program brings together major research and clinical groups working in children’s cancer around the country. Cancer cells of program participants are profiled, with researchers then using this information to build an understanding of the genetic and biological causes of childhood cancers and test new therapies to help find the most effective treatment for each individual participant.

Minister Hunt said the extra funding will expand the program from about 150 children per year to 1000 children per year.

Leukaemia Foundation CEO Bill Petch said the program’s expansion was an important lifeline for the close to 400 children currently diagnosed with a blood cancer each year nationwide.

Blood cancer, specifically leukaemia and lymphoma, remains the most commonly diagnosed childhood cancer for Australians 14 years and younger, accounting for about 30 percent of all cancer diagnoses in that age group nationally.

Adolescents and young adults are also significantly affected by this complex set of diseases, with close to 300 15-25 year olds expected to be diagnosed with blood cancer each year.

“The importance of precision medicine in treating these Australians cannot be understated, and it is an initiative that we have been advocating for as a leading national voice for people living with blood cancer and through our leading role with the Blood Cancer Taskforce,” Mr Petch said.

“The reality is blood cancer is not one disease, but many, influenced by genetic mutations that affect disease development and treatment options. Precision medicine targets specific changes in cancer DNA while also taking into account genetic variations between individuals, and in doing so it illuminates potential treatment pathways specifically tailored to that person, often leading to more effective outcomes.

“The Leukaemia Foundation is working towards building a future that ensures equitable access to the latest and most appropriate therapy for all Australians living with blood cancer. The promise of precision treatment capturing all young people means wherever they live and whatever their diagnosis, every Australian in this cohort with a blood cancer can look forward to a treatment pathway specifically designed to be more efficient and effective for them.”

Mr Petch said the announcement was also in line with Leukaemia Foundation research showing Australians living with blood cancer want to see rapid change in cancer research driven by precision medicine.

“We also know that less than 30% of Australians with a blood cancer have access to genetic and genomic testing to inform their diagnosis and treatment planning, which is a number we are hoping to improve through our work with the broader blood cancer community,” he said.

Late last year the Leukaemia Foundation released the first 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.

Mr Petch 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 continues to invest and partner in ground-breaking research which supports precision medicine, such as diagnostics and genomic screening.

– ENDS  –

Treatment for more Australians living with myeloma now available through Pharmaceutical Benefits Scheme (PBS)

Treatment for more Australians living with myeloma now available through Pharmaceutical Benefits Scheme (PBS)

Wednesday, 1 April 2020

The Leukaemia Foundation has welcomed news the cancer treatment Lenalidomide (Revlimid®) will now be available to more myeloma patients through the Pharmaceutical Benefits Scheme (PBS).

From today, the treatment will be available to newly diagnosed myeloma patients receiving maintenance treatment and who have already undergone an autologous stem cell transplant.

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

Federal Minister for Health, The Hon. Greg Hunt MP, said more than 1,000 patients a year are expected to benefit from the listing.

Around 18,000 Australians are currently living with myeloma, also known as multiple myeloma, which is a complex and relatively rare blood cancer affecting the body’s plasma cells most commonly occurring in people aged 40 and older. Myeloma develops when plasma cells undergo a cancerous change to become myeloma cells, multiplying at an increasing rate and taking over the bone marrow. Patients experience weaker bones more prone to breaking, as well as anaemia, bone pain, kidney damage, frequent infections and increased bleeding and bruising.

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

CEO Bill Petch said the Leukaemia Foundation has advocated for increased access to Lenalidomide for people living with myeloma because research has shown it is effective in improving survival outcomes and stalling the progression of the disease by around two years.

“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,” he said.

“While treatment options and survival rates for some blood cancers are improving, the impact of a diagnosis of myeloma on peoples’ lives and the ongoing affect to their health remains severe.

“New, improved and more timely treatment options like Lenalidomide that can reduce toxicity and side effects, improve survival outcomes and a patient’s quality of life and which are available through the Pharmaceutical Benefits Scheme for all Australians, 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.”

Late last year the Leukaemia Foundation released the first 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.

Mr Petch 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.

[1] https://www.leukaemia.org.au/wp-content/uploads/2019/09/State-of-the-Nation-Blood-Cancer-in-Australia_Leukaemia-Foundation.pdf 

PBAC reconsidered plitidepsin for myeloma 

PBAC reconsidered plitidepsin for myeloma 

The Pharmaceutical Benefits Advisory Committee (PBAC) considered four blood cancer treatments at its March 2020 meeting including a drug for myeloma – plitidepsin (Aplidin®).

Plitidepsin was given a subsequent decision not to recommend. This is the second time the drug was not recommended for listing on the Pharmaceutical Benefits Scheme (PBS) for this particular indication, having been previously considered by the PBAC at its July 2019 meeting.

The submission from Specialised Therapeutics was for plitidepsin in combination with dexamethasone for people with relapsed or refractory myeloma who have had three prior treatment regimens*.

Summary clinical trial information indicated that plitidepsin, which is administered in hospital as an IV therapy, was well tolerated and may reduce the risk of disease progression and death.

However, in its decision not to recommend plitidepsin for listing on the PBS in this indication, the PBAC noted that it considered the claim of non-inferiority versus the comparator drug (pomalidomide) was not demonstrated in the third-line setting and that the cost-effectiveness of plitidepsin was not demonstrated in the fourth-line setting.

The PBAC also considered the treatment comparison against dexamethasone as a monotherapy demonstrated only a marginal benefit in terms of progression free survival (PFS) without progressive disease (PD) confirmation, and the clinical benefit attributed to PFS with PD confirmation was not reliable.

The Leukaemia Foundation provided consumer comments to the PBAC in February 2020. These comments reflect the everyday experiences of people living with myeloma, sourced from our disease-specific community groups on Facebook.

A Victorian patient made the following comment:

“Very excited to hear of new drugs coming from nature – powerful bio-active agents have proven to wildly useful in medicine to date, and have only heard good things about the prospects of this drug for myeloma, which is known to be strongly relapsing to treatment. So while I’m not using it as yet, to have it in the arsenal of available drugs in the future is very encouraging.”

In its submission, the Leukaemia Foundation said: “the benefits of more effective and well tolerated treatments on the lives of individuals with myeloma cannot be underestimated. We assist myeloma patients over the course of their experience with this blood cancer and we know they would welcome the availability of a new treatment option”.

“The impact of this incurable cancer and the cytotoxic effects of treatment have an immeasurable impact on people’s lives and the lives of their families and carers.

“Giving clinicians more options in their ‘toolbox’ in the fight against myeloma, and removing barriers so patients can commence treatments tailored to their disease without any undue delays, is vitally important.”

The Leukaemia Foundation also made comments to the July 2019 PBAC meeting for a previous submission for plitidepsin for myeloma.

*   At least three treatments including both a proteasome inhibitor (PI) and an immunomodulator (IMiD), or in patients who have received two prior lines of therapy, if the patient is refractory and/or intolerant to both a PI and an IMiD.

Number of Australians living with blood cancer to more than double

Number of Australians living with blood cancer to more than double

Tuesday, 4 February 2020

Twenty Australian children, adults, parents and grandparents are losing their lives every day as blood cancer becomes one of the nation’s most diagnosed and deadly killers.

Sadly, that number is projected to more than double by 2035, and around 186,000 Australians could lose their lives to the disease in the next 15 years, according to the Leukaemia Foundation’s recently released State of the Nation: Blood Cancer in Australia[1] report.

Today, on World Cancer Day, Leukaemia Foundation CEO Bill Petch has launched the annual World’s Greatest Shave campaign urging Australians to continue to support the fight against blood cancer as the organisation prepares for a massive jump in demand for its services and begins paving the way for a new national, collaborative approach to help save the lives of Australians fighting the disease.

“The first of its kind, State of the Nation report looks at the impact of blood cancers across the country and provides evidence showing that blood cancers are also under-reported,” Mr Petch said.

“We now know that the true size, scale and impact of blood cancer in Australia has been significantly underestimated, potentially leading to inconsistency and inadequacy of funding and service delivery.”

The State of the Nation: Blood Cancer in Australia report shows that not only is there an urgent call to better meet the needs of those currently living with blood cancer, but that demand on support services is going to grow substantially in the next 15 years.

Every day, 41 Australians will be told they have blood cancer and 110,000 Australians are currently living with the disease. According to the report, these numbers are also projected to more than double by 2035 to 100 people diagnosed with blood cancer every day and more than 275,000 living with the disease.

Mr Petch said the report also found the cost to the health system of treating and caring for people with blood cancer is projected to increase to over $10.9 billion in 2035 – up from $3.4 billion annually today. The total cost to the Australian economy is also expected to reach $71.9 billion a year by 2035 – more than triple today’s annual estimated cost of $22.9 billion.
“Blood cancer is and will continue to be an issue for all Australians and there is an urgent need for collaborative action to help meet the needs of those living with the disease, today and into the future.”

With the support of the Federal Minister for Health Greg Hunt, the Leukaemia Foundation has established the  Blood Cancer Taskforce, which includes 30 of Australia’s leading blood cancer experts and stakeholders, to deliver Australia’s first National Strategic Action Plan for Blood Cancer.

“It’s the first time in Australian history that the issue of blood cancer has been put under the national microscope, and now we are working collaboratively on a  National Action Plan to catalyse health system reform, help accelerate research, enable access to novel and specialised therapies and most importantly, to empower patients. The aim is to create a future where all Australians receive the best treatment available and not only survive their disease,but thrive with all of the support they need.”

Co-chaired by Mr Petch and Professor John Seymour AM (Director, Department of Haematology, Peter MacCallum Cancer Centre and the Royal Melbourne Hospital), the Taskforce includes leaders of the Australian blood cancer community such as Prof. Sanchia Aranda AM (Cancer Council), Richard Vines (Rare Cancers Australia), Elizabeth De Somer (Medicines Australia), and Prof Andrew Roberts (WEHI) and Prof David Gottlieb ( Westmead Hospital).

“The Leukaemia Foundation is proud and privileged to stand with Australia’s incredibly talented and diverse blood cancer community to make sure everyone has access to the best care, to accelerate research delivering rapid advancements and to empower people with blood cancer to live well,” he said.

“We’re not going to stop until together, we have conquered one of Australia’s most prevalent and deadly cancers.”

Mr Petch said the Leukaemia Foundation was determined to achieve its bold new goal to see zero lives lost to blood cancer by 2035, and the organisation is calling on the national community to help make this vision a reality.

“The funds raised by World’s Greatest Shave are vital to improve and save lives, so we urge all Australians to take a stand against blood cancer by rallying together, signing up and getting sponsored to bravely shave their heads or cut or colour their hair in 2020,” he said.

Join the fight against blood cancer by registering for World’s Greatest Shave at www.worldsgreatestshave.com

Learn more about the Leukaemia Foundation’s path to zero lives lost to blood cancer hereOpen this document with ReadSpeaker docReader.

[1] https://www.leukaemia.org.au/about-us/mylifecounts/stateofthenation/

 

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

Government’s commitment to blood cancer

Government’s commitment to blood cancer

Monday 3 February, 2020

The Leukaemia Foundation welcomes the commitment from the Federal Health Minister Greg Hunt to establish a Blood Cancer Taskforce and Action Plan.

The Blood Cancer Taskforce will work with leading clinicians, researchers and patient groups in the blood cancer community to develop a blueprint and recommendations for Government to improve blood cancer survival rates.

Currently, close to 13,000 Australians are diagnosed with a blood cancer like leukaemia, lymphoma and myeloma every year (1), however recent analysis showed the number would increase to around 17,000 people (2) by 2025. This is close to 50 Australians projected to be newly diagnosed, every day, by 2025 – or two people every hour.

Leukaemia Foundation CEO Bill Petch said that this commitment from Government is welcome news for the blood cancer community.

“We are pleased that the Government has acknowledged the need for national leadership and action on blood cancer,” Mr Petch said.

“There are significant differences in treatment and survival outcomes depending on where a person lives, so it’s really important that we work together with Australia’s leading experts, Government and the blood cancer community to develop a plan to beat blood cancer.”

“For people living with blood cancer this is really significant, because we now have bipartisan commitment from both sides of politics to develop a blueprint for action on blood cancer.”

The Leukaemia Foundation looks forward to working with the incoming Government, our members and partners to progress this important work.

The Leukaemia Foundation provides practical and emotional support to Australians diagnosed with a blood cancer at no cost, thanks to the generosity of the community through our fundraising efforts. We invite all Australians living with a blood cancer, their families and carers to subscribe for ongoing information at www.leukaemia.org.au or call 1800 620 420.

Footnotes:
[1] https://www.aihw.gov.au/reports/cancer/cancer-data-in-australia/contents/summary
[2] Incidence data from 2005 – 2015: https://www.aihw.gov.au/reports/cancer/cancer-data-in-australia/contents/summary

National blood cancer taskforce meets

National blood cancer taskforce meets

Monday September 30, 2019

The Leukaemia Foundation established the Blood Cancer Taskforce with the support of the Federal Government to develop Australia’s first National Strategic Action Plan for Blood Cancer.

Co-chaired by Bill Petch (CEO, Leukaemia Foundation) and Professor John Seymour AM (Director, Department of Haematology, Peter MacCallum Cancer Centre and the Royal Melbourne Hospital), the Taskforce unites Australia’s leading haematologists, researchers, patients and members of the blood cancer ecosystem for the first time. Their role is to provide a blueprint to help tackle the key issues facing the blood cancer community today and into the future.

The formation of the Taskforce and development of the Plan mark a major milestone for the blood cancer community and will set the national agenda around blood cancer for many years to come.

They met for the first time on 30 September 2019, giving them the opportunity to discuss and agree on how they will achieve the publication and distribution of the National Strategic Action Plan for Blood Cancer Plan by June 2020.

The first step will see the formation of Working Groups led by members of the Taskforce to focus on key priorities identified in the State of the Nation: Blood Cancer in Australia report. These Working Groups will engage in consultation with key blood cancer stakeholders, review existing services, programs and literature, and commence the early stages of drafting the National Strategic Action Plan for Blood Cancer.

The members of the first National Blood Cancer Taskforce are:

  • Professor Sanchia Aranda AM
    CEO
    Cancer Council Australia
  • Dr Sharon Avery
    Haematologist
    Cairns Base Hospital
  • Dr John Bashford
    Director of Research
    Icon Group & PCPA
  • A/Professor Kate Burbury
    Consultant Haematologist;
    Deputy Chief Medical Officer
    Peter MacCallum Cancer Centre
  • Dr Joe Collins
    Representative
    Lions Club International
  • Dr Michael Dickinson
    Haematologist and Disease Group Lead Aggressive Lymphoma (Peter MacCallum)
    Lymphoma Australia, Chair Medical Subcommittee
  • Dr Chris Fraser
    Chair Executive Council
    ANZCHOG
  • Professor Maher Gandhi
    CEO and Director of Clinical Research
    Mater Research
  • Professor David Gottlieb
    Program Director BMT, Head Cell Therapies
    Westmead Hospital
  • Barbie Hartigan
    Advocate
    Leukaemia Foundation Patient Support
  • Professor Tim Hughes
    Cancer Theme Leader
    SAHMRI
  • Dr Paul Jackson
    General Manager Knowledge Management
    Cancer Australia
  • Professor David Joske
    Chairperson
    Solaris Cancer Care
  • Melanie Kelly
    Director
    Insight Economics
  • Dr Rishi Kotecha
    Consultant Paediatric Oncologist & Clinical Haematologist
    Perth Children’s Hospital; ANZCHOG
  • A/Professor Steven Lane
    Head of Cancer Program
    QIMR Berghofer
  • Professor Paula Marlton
    Head of Leukaemia; Deputy Director Haematology
    Princess Alexandra Hospital
  • Dr Robert Menz
    SA&NT Council member
    RACGP
  • A/Professor Peter Mollee
    Director
    Australasian Leukaemia & Lymphoma Group
  • Carmel O’Kane
    Cancer Nurse Practitioner; Vice President & Director Professional Practice
    Cancer Nurses Society of Australia
  • Bill Petch
    CEO
    Leukaemia Foundation
  • Professor Miles Prince AM
    Director of Molecular Oncology and Cancer Immunology Epworth
    Snowdome Foundation; Myeloma Australia, Epworth Hospital
  • Professor Andrew Roberts
    Laboratory Head; Joint Leader, Cancer Research and Treatments Theme
    Walter and Eliza Hall Institute
  • Professor John Seymour AM
    Director: Department of Haematology
    Peter MacCallum Cancer Centre & Royal Melbourne Hospital
  • Deborah Sims
    Patient and advocate
    Blood Cancer Survivor
  • Dr Delaine Smith
    CEO
    Australasian Leukaemia & Lymphoma Group
  • Elizabeth de Somer
    CEO
    Medicines Australia
  • Dr Meg Wall
    Unit Head, Genetics and Molecular Pathology
    Monash Pathology; Haematology Society of Australia & New Zealand
  • Dr Will Stevenson
    Haematologist
    Royal North Shore Hospital; Haematology Society of Australia & New Zealand
  • Richard Vines
    Chairman
    Rare Cancers Australia

Leukaemia Foundation supports latest Pharmaceutical Benefits Scheme (PBS) listings for blood cancer patients

Leukaemia Foundation supports latest Pharmaceutical Benefits Scheme (PBS) listings for blood cancer patients

The Leukaemia Foundation has welcomed news Australians living with Philadelphia chromosome B-cell precursor acute lymphocytic leukaemia (B-ALL) will now have access to treatment options blinatumumab (Blincyto®) and inotuzumab ozogamicin (Besponsa®) through the Pharmaceuticals Benefits Scheme (PBS) effective October 1, 2019.

Leukaemia Foundation CEO Bill Petch joined Federal Minister for Health, The Hon. Greg Hunt MP and industry leaders today at the Northern Cancer Institute in Sydney for the announcement.

Mr Petch said the extended listing gives Australians living with relapsed or refractory B-ALL access to vital precision medicine and front-line treatment to fight their disease.

“This is an important announcement for people living with B-ALL, which is an acute and incredibly aggressive form of blood cancer. These PBS listings means there are more options available for B-ALL patients, so it is welcomed by the blood cancer community” he said.

“Today is also an important day for the blood cancer community as the National Blood Cancer Taskforce will meet for the first time this afternoon in Sydney.” Mr Petch said.

In response to the Leukaemia Foundation’s State of the Nation: Blood Cancer in Australia report1 release earlier this month, the Federal Minister for Health, The Hon. Greg Hunt MP announced the development of a national Blood Cancer Taskforce and charged the Leukaemia Foundation with delivering Australia’s first National Strategic Action Plan for Blood Cancer.

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

Mr Petch said the formation of the Taskforce and development of the National Strategic 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 Leukaemia Foundation provides free practical, emotional and educational support to Australians diagnosed with a blood cancer including B-ALL. The Leukaemia Foundation produces a series of disease specific newsletters including ALL News, and invites all Australians living with the disease to subscribe for ongoing information here.

New national report reveals impact of blood cancer

New national report reveals impact of blood cancer

A first-of-its-kind nationwide report commissioned by the Leukaemia Foundation reveals the true size, scale and impact of blood cancer and the lived experiences of people living with blood cancer in Australia today.

The Leukaemia Foundation has today marked the start of Blood Cancer Awareness Month by releasing the State of the Nation: Blood Cancer in Australia report[1], which identifies the challenges and opportunities influencing survival and quality of life for Australians living with blood cancer.

Leukaemia Foundation CEO Bill Petch said the comprehensive and evidence-based report shows that blood cancer has been underestimated and under reported. It identifies that blood cancer is now more significant and prevalent than ever before and that diagnosis rates are on the rise across the country.

Due to the urgency of the report’s findings, the Federal Minister for Health, The Hon. Greg Hunt MP has announced the development of a national Blood Cancer Taskforce and charged the Leukaemia Foundation with delivering Australia’s first National Strategic Action Plan for Blood Cancer.

The State of the Nation report reveals that by 2035, 275,000 Australians will be living with blood cancer – more than double the number of people battling these diseases today. It also shows that up to 186,000 people may die as a result of blood cancer over the next 16 years.

“Right now, every day, 41 Australian children, adults, parents and grandparents will be told they have blood cancer and unfortunately 20 people will lose their life to blood cancer, making these cancers some of the most common and deadly in the country,” Mr Petch said.

“This report shows that by 2035 these figures will more than double, with close to 100 people a day set to be diagnosed and more than 40 people expected to die every day.”

Mr Petch said the report also found the cost to the health system of treating and caring for people with blood cancer is expected to increase to over $10.9 billion in 2035 – up from $3.4 billion annually today. The total cost to the Australian economy is also expected to reach $71.9 billion a year by 2035 – more than triple today’s annual estimated cost of $22.9 billion.

“This report outlines an agenda for change, which will, in turn, drive down both the personal and economic toll blood cancer is set to have on our country. That is why we need all Australians to unite in recognising blood cancer as a significant issue that will impact all of us,” Mr Petch said.

“An unprecedented 3200 people living with blood cancer were surveyed in the development of this patient-centred and people-focused report, and it is their lived experiences that are fueling our push for action. We want all Australians living with blood cancer, their families and carers to know – we see you, we hear you, and we’re here for you.”

The report identifies four key priorities to tackle blood cancer: empowering patients, ensuring equity of access, accelerating research and catalysing health service reform.

“It is time for a national collaborative approach to address these priorities and save the lives of our fellow Australians,” Mr Petch said.

The Blood Cancer Taskforce will unite Australia’s leading hematologists, researchers, patients and members of the blood cancer ecosystem for the first time to work with the Leukaemia Foundation to develop the National Strategic Action Plan, which will provide the blueprint to help tackle the key issues facing the blood cancer community today and into the future.

Mr Petch said the formation of the Taskforce and development of the National Strategic 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.

“Advances in treatment and care over the past 40 years have transformed the way Australians live with a blood cancer, however the path to conquering blood cancer is long and requires improved access for all Australians to the right information, the best treatments and services, and the latest treatments, tests and diagnostic tools, to help people with blood cancer not only to survive – but also to live well,” he said.

“The Leukaemia Foundation and the whole blood cancer community are committed to partnering with the Federal Government in tackling the challenges of blood cancer.”

Mr Petch said the Federal Government’s action also bolstered the bold new goal set by the Leukaemia Foundation to create real change for people living with blood cancer: zero lives lost to blood cancer by 2035.

“For the past 40 years, the Leukaemia Foundation has supported and advocated for people living with blood cancer in Australia. Now we are looking forward to leading a new era of change for the Australian blood cancer community by partnering with industry, government, medical professionals and everyday Australians to realise the goal of zero lives lost to blood cancer by 2035,” he said.

Report methodology: The State of the Nation: Blood Cancer in Australia report was developed by independent research firm Insight Economics in consultation with the Leukaemia Foundation. Development involved consultation with more than 65 leading experts from across the blood cancer ecosystem including clinicians and haemaologists, research institutes, government decision-makers, blood cancer NGOs and industry. The report draws on data from the Australian Institute of Health and Welfare (AIHW), Australian Bureau of Statistics (ABS) and state cancer registries along with survey data from more than 3200 people living with blood cancer, providing a statistically significant snapshot of the experiences of people living with a blood cancer in Australia today.

 

KEY FINDINGS: STATE OF THE NATION – BLOOD CANCER IN AUSTRALIA REPORT

  1. Blood cancer Incidence, mortality, prevalence statistics
  PREVIOUSLY KNOWN WHAT WE NOW KNOW 2035
Blood cancer incidence 35 people diagnosed every day 41 people diagnosed every day (1 person every 36 minutes, or 15,000 a year) Close to 100 people diagnosed every day (36,000 a year)
Blood cancer mortality 12 people losing their life every day 20 people losing their life every day (7,500 per year) 42 people losing their life every day to blood cancer as the primary cause (more than 15,000 per year)
Blood cancer prevalence 60,000 people living with blood cancer 110,000 people living with blood cancer 275,000 people living with blood cancer

 

  1. Blood cancer in Australia:
  • 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 the Australian community, and the most significant cause of non-preventable cancer death.
  • Blood cancer has no preventative educational campaigns or screening programs for prevention – unlike other cancers (such as lung, melanoma and colorectal).
  • Compared to the high incidence and mortality cancers of breast, lung and colorectal cancers, blood cancer is the second deadliest cancer in Australia following lung cancer
  • Compared to the high incidence and mortality cancers of breast, lung and colorectal cancers, blood cancer is the third most commonly diagnosed cancer in Australia, following breast (18,235) and colorectal cancer (17,004)
  • Blood cancer is the most commonly diagnosed children’s cancer. Approximately 400 children are currently diagnosed with blood cancer each year. The major sub-types for children include ALL, AML, Non-Hodgkin lymphoma and Hodgkin lymphoma.
  • Approximately 500 adolescents and young adults (persons aged 15-25 years old) are expected to be diagnosed with the same mix of sub-types as in children.
  • More than 5,200 adults between the ages of 25 and 65 will be diagnosed, and approximately half of these diagnoses will be for some form of Non-Hodgkin lymphoma.
  1. Blood cancer in Australia by 2035:
  • More than 186,000 Australians will lose their life to blood cancer between now and 2035, making blood cancer a leading cause of cancer death in this country
  • The expected annual cost to the health system to treat and care for people with a blood cancer will be $10.9 billion in 2035, compared to $3.4 billion in 2019
  • The expected total annual cost of blood cancer to the Australian economy will be $71.9 billion, compared with $22.9 billion in 2019
  1. Key insights affecting people living with blood cancer in Australia:
  • The report found there were inconsistencies in data, and that blood cancer has been under-reported. Therefore, the true size, scale and impact of blood cancer in Australia has been underestimated, potentially leading to inconsistency and inadequacy of funding and service delivery.
  • Less than 40% of Australians living with blood cancer today receive a written care plan or are referred to patient support services
  • Nearly 40% of people living with a blood cancer wished that access and referrals to patient support services had been more frequently discussed during their diagnosis and treatment planning.
  • Around 30% of people are referred to one or more other specialists before a haematologist, and nearly one in 10 people are referred to at least two specialists before receiving a haematologist referral.
  • Less than 30% of Australians living with blood cancer today have access to genetic and genomic testing to inform their diagnosis and treatment planning
  • Less than 20% of Australians living with blood cancer today have participated in a clinical trial, and only 1 in 5 who want to enroll in a clinical trial have access to one
  • A 13% improvement in survival outcomes between states and metro and regional areas could be achieved by 2035. This includes a 5% difference in survival outcomes achievable by removing treatment inconsistencies between regional and metro areas, and an 8% difference in survival outcomes achievable by ensuring consistent use of evidence-based practice and treatment nationally across all states and territories. Achieving these goals could save more than 22,000 lives between now until 2035 – and save more than 350,000 expected years of life that would otherwise be lost.
  • Currently, blood cancers are a notifiable disease in other countries such as the US, however not in Australia. The report recommended that making blood cancers a notifiable disease in Australia could address gaps in reporting inconsistencies. This could help patients better access information and treatments and also help to better identify them for potential participation in clinical trials. Recognition as a notifiable disease would also help provide more accurate incident and mortality reporting to state cancer registries, triggering action by health services, and potentially improving service funding and delivery.
  • Medical professionals consulted during the report’s development noted that consistent implementation of current best practice available globally, not just in Australia today, could reduce the number of deaths by potentially up to one third.