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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 –

In just 10 short years, blood cancer diagnoses have risen 38 per cent and regional patients face biggest barriers to survival

In just 10 short years, blood cancer diagnoses have risen 38 per cent and regional patients face biggest barriers to survival

Tuesday September 12020 

September is Blood Cancer Awareness Month

The Leukaemia Foundation is today shining spotlight on blood cancer in Australia as it welcomes the tenth Blood Cancer Awareness Month and sharpens its focus on turning the tables on one of the country’s most common and deadly cancers. 

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 lifean increase of 27%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 time². 

The Leukaemia Foundation’s Acting CEO Alex Struthers said that, sadly, survival could also depend on where you live. Last year’s first-of-its-kind State of the Nation: Blood Cancer in Australia report revealed a 13 per cent gap in survival rates between patients in regional and metropolitan areas (5%), and between states and territories (8%).  

“The State of the Nation report showed us that 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,” she said. 

Over half of all blood cancer patients living in regional and remote areas are more likely to wait over a month to see a haematologist after presenting to a GP, and a third are unsure about their treatment plan. One in four of these patients also don’t know where to go if they have more questions about their blood cancer. 

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

Ending the postcode lottery faced by regional patients and turning the tables on blood cancer in this country is a priority for the Leukaemia Foundation.” 

The Leukaemia Foundation’s release of the State of the Nation report last year led to Federal Minister for Health, The Hon. Greg Hunt MP establishing the Blood Cancer Taskforce – a unique collaboration of some of the nation’s top blood cancer experts and leaders to transform care and support and break down the barriers to a cure for all Australians living with blood cancer. 

The Taskforce is now preparing to launch the National Strategic Action Plan for Blood Cancer – a cuttingedge national blueprint to save the lives of Australian’s facing blood cancer with a bold vision of zero lives lost to the disease by 2035, due for release soon. 

Ms Struthers said the unique collaboration of the Blood Cancer Taskforce anthe development of the National Strategic Action Plan for Blood Cancer represented a real opportunity to change the face of treatment, care and ultimately survival for Australians facing a blood cancer diagnosis.    

“Australia has strong foundations in regards to access to new therapies and universal access to a national health care system, but with a significant increase in blood cancer incidence – even during a global health pandemic – a clear, evidence-based plan is now required to tackle the human and financial toll of blood cancer in our country,” she said.  

There is no onesizefitsall solution. We have excellent health systems and services across Australia which are achieving remarkable results in improving survival rates and treatment for people living with blood cancer, however we need to work together if we are going to meet the challenges we face and help all Australians with blood cancer not only survive, but to live the best quality of life possible. 

With less than 50% of people living with blood cancer given a written care plan, and only 1 in 5 people having access to a clinical trial³, there is work to be done to improve supportive care and access to treatment for Australians living with blood cancer. It is our hope that the National Action Plan, once implemented, will pave the path to saving lives as well as bridging these gaps. 

The Blood Cancer Taskforce has delivered the National Action Plan to the Federal Government and will continue to work alongside the government to move towards the launch of the plan soon. 

Leukaemia Foundation spokespeople are available for comment by contacting the Leukaemia Foundation media team on media@leukaemia.org.auImagery is available here or through the same contact.  

About Blood Cancer in Australia 

Incidence and Mortality4: 

  • 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. 
  • 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 (3,031ii) 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. 

Prevalence5: 

  • Based on AIHW data, the State of the Nation report identified issues with the undernotification 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.  

Childhood Cancer:  

  • Blood cancer (in specific leukaemia and lymphoma), remains the most commonly diagnosed childhood cancer (aged 0-14 years) in Australia, accounting for over 40% of all diagnoses.  

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   

– ENDS –

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

Light the Night … at Home – Record numbers sign up early for reimagined event as COVID-19 forces transformation

Light the Night … at Home – Record numbers sign up early for reimagined event as COVID-19 forces transformation

Wednesday 5 August, 2020

Australians touched by blood cancer urged to sign up

The Leukaemia Foundation’s annual Light the Night lantern ceremony has attracted record numbers of sign-ups in its launch weeks… and it’s all thanks to COVID-19.

For the first time, Australians impacted by blood cancer will be able to sign up to host a Light the Night … at home, with families in every corner of the country expected to light up the night skies from their own backyards, loungerooms and hospital wards.

Already, more than 650 families from across Australia have signed up to be part of the event on Saturday, October 10 raising an astonishing $60,000. That’s the highest number of registrations and funds raised, this early in the campaign, in nearly a decade. As the new, reimagined event rises to meet the challenges bought by COVID-19 the Leukaemia Foundation is hoping more Australians than ever will come together, while staying safely apart to Light the Night, in a whole new way.

Registrations are already lighting up a new, interactive map showing lanterns from families all over the country as the Leukaemia Foundation finds a unique new way of uniting Australia’s blood cancer community by harnessing the latest IT platforms and interactive tools.

For 13 years, Light the Night has been the only Australian event that brings the country’s entire blood cancer community together including blood cancer patients, their families, carers and friends and members of the medical and research communities to stand united in support for each other, and in support of a future free of blood cancer.

Leukaemia Foundation’s Supporters General Manager Rachael Lance said in previous years, holding a Light the Night event at a specific location, time and day had prevented some people from attending – especially those who are immunocompromised during treatment.

“Now that we can all Light the Night – at home … we are thrilled that more people than ever before will be able to participate from the comfort of their chosen location and be part of this shared moment of hope and unity.

“It will be one national moment for the blood cancer community to come together – regardless of where you live, or your stage of treatment. How families choose to Light the Night is limited only by their imaginations.  A family dinner party, a sunset barbeque with close friends, a twilight picnic in the backyard or bedside in hospital with a loved one… it’s up to you,” Ms Lance said.

On the night, Australians are invited to light the three coloured lanterns that symbolise the different ways blood cancer has touched their life:

  • White… in honor of your own blood cancer journey.
  • Gold… in memory of a loved one lost to blood cancer.
  • Blue… to show your support for someone facing blood cancer.

On Saturday, October 10 at 8pm local time, registered participants will be able to stream the official ceremony from lightthenight.org.au or via YouTube as well as explore a glowing map of Australia that will feature thousands of Instagram posts from across the country through the hashtag #LightTheNightAU. Everyone is encouraged to tag #LightTheNightAU and their city or suburb (eg: #Sydney) to appear on the map.

Currently, there are more than 110,000 Australians diagnosed with blood cancer and the Leukaemia Foundation’s latest Blood Cancer in Australia report confirms that in just 15 years, by 2035, this number will more than double to 275,000 people.1

Ms Lance said sadly, charities were one of the victims of COVID-19 with many traditional community fundraising events being compromised or cancelled. While the Leukaemia Foundation was facing a shortfall in fundraising, demand for support and services for Australians living with blood cancer had increased significantly.

“The reality is, charities are relying now more than ever on the generosity of Australians. Every dollar raised makes a difference.”

Light the Night is both an opportunity for Australia’s blood cancer community to unite and a platform for the Leukaemia Foundation to raise funds to cure and conquer blood cancer.

“Those hosting the night for their loved ones will need to register their personal event and invite their friends and family to join them by signing up. They can then share their blood cancer stories via their personal fundraising page and fundraise $100 each to receive an official lantern to light on the night.

“Funds raised through this special event help to provide families facing blood cancer with the care they need to make it through every scary, uncertain moment that follows a diagnosis,” Ms Lance said.

“Donations also help to transform these fears into hope in life-changing ways by furthering the work of brilliant research scientists. This research is already saving lives right now as it continues to discover faster diagnostics and even better treatments for people with blood cancer.

“The lighting of lanterns symbolises the hope we share for a future free of blood cancer and the support of a community that understands the darkness a blood cancer brings to the lives of everyone impacted.

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

“We want to share our heartfelt gratitude to our partners Bridgestone, Holden, Brydens Lawyers, Kojo, Simon National Carriers for their unwavering support of Light the Night. In a year when we needed their support most – they have made Light the Night possible.”

Leukaemia Foundation’s Supporters General Manager Rachael Lance said the organisation is now urging Australians to register to be part of the event so that lanterns can be delivered direct to Australian doorsteps in time. To register go to lightthenight.org.au or phone 1800 500 088.

About blood cancer in Australia 

  • Blood cancer is one of the most commonly diagnosed cancers in Australia. it does not discriminate and can develop in anyone, occur at any age and at any stage of life.
  • More than 110,000 people are living with blood cancer in Australia today.
  • Every year, more than 15,000 Australians will be newly diagnosed with blood cancer such as leukaemia, lymphoma and myeloma. This is equivalent to 41 people every day or one person every 36 minutes.
  • Blood cancer is the most commonly diagnosed childhood cancer.
  • Blood cancer is on the rise. Over the past 10 years, incidence of blood cancer has increased by approximately 30%.

How to be part of Light the Night 

  • Sign up and register your event at lightthenight.org.au 
  • Share your event page and invite your closest friends and family to join you for a special gathering on Saturday, October 10, 2020.
  • Fundraise to receive an official lantern to light on the night.
  • Gather with your loved ones and be part of the virtual lantern ceremony at nightfall
  • Share your experience and connection to blood cancer by tagging #LightTheNightAU and your hometown (eg: #Sydney)

(1) https://www.leukaemia.org.au/how-we-can-help/advocacy-and-policy/state-of-the-nation-my-life-counts/ 

– ENDS –

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

New Leukaemia Foundation Website Launches today

New Leukaemia Foundation Website Launches today

The Leukaemia Foundation is proud to unveil new website providing over 900 pages of the latest trusted information about blood cancer, custom-built specifically with Australian blood cancer patients and their family’s needs in mind. 

Designed to inform and empower patients and their families right throughout their experience with blood cancer, the new website includes extensive information on the different types of blood cancers, the latest news on research, trials, tests and treatments as well as personal stories from those who have a lived experience with blood cancer.  

Leukaemia Foundation Acting CEO Alex Struthers said the Leukaemia Foundation is driven by the need to improve the lives of people affected by blood cancer by ensuring they have access to trusted, credible information and resources.  

“Drawing on more than four decades of experience and knowledge, we have built a patientcentric resource that will transform how Australians living with blood cancer access disease, treatment and wellness information, Ms Struthers said. 

Google trends confirm that in Australia the peak times people search online for information about blood cancer is between 1am – 4am every single day (1).  

“Now more than ever, Australians affected by blood cancer need accurate information that is relevant, relatable and easily accessible, at any time of the day. People living with blood cancer will be able to learn and digest information about their disease and treatment journey at their own pace and at a time that is convenient for them,” Ms Struthers said.  

Over the past year, the Leukaemia Foundation website has had more than 1.5 million-page views, with one million of those visitors accessing disease information.   

Blood cancer comes with so many questions and unknowns. Our supporters have made accessing information possible by ensuring families around the country find the credible, relevant facts they’re searching for,” she said. 

The 18-month long website project has come together through the efforts of a Leukaemia Foundation Steering Committee, Working Group and generous funding from Perpetual Trustees and pharmaceutical companies Janssen, Bristol-Myers Squibb / Celgene, Novartis, Astra Zeneca, Roche and MSD. 

“Health care professionals and stakeholders in the blood cancer community will know that when they refer a patient to the Leukaemia Foundation website, they will be accessing credible information which meets the health literacy levels for all patients,” Ms Struthers said. 

The Leukaemia Foundation’s new website will be live from Friday 17 July 2020. For further information please visit leukaemia.org.au 

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

ENDS 

 

(1) https://trends.google.com.au/trends/explore?date=now%201-d&geo=AU&q=Blood%20Cancer

Leukaemia Foundation partners with new fitness app that turns exercise into a game

Leukaemia Foundation partners with new fitness app that turns exercise into a game

Thursday 18 June, 2020 

The Leukaemia Foundation is proud to announce a charity partnership with District, which provides a new and innovative way to support the 41 men, women and children diagnosed with blood cancer in Australia every day – by encouraging people to get active and explore their city.

District uses cutting-edge experiential technology to bring cities to life and turn a monotonous workout into an urban exploration game. Perfect for all adult ages and fitness levels, the District app transforms an everyday walk, jog or run routine to a fun individual or team outdoor adventure challenge with virtual checkpoints across your local city.

A generous $8 from every District ticket sold will go to support Australians living with blood cancer. Currently, there are more than 110,000 Australians diagnosed with blood cancer and the Leukaemia Foundation’s latest Blood Cancer in Australia report confirms that in just 15 years, by 2035, this number will more than double to 235,000 people[1].

Leukaemia Foundation General Manager of Supporters Rachael Lance said that by getting active and raising funds through District, participants will be doing something positive for their own health, while also ensuring that all families affected by blood cancer across the country, no matter where they live, can be supported.

“By downloading District and signing up, 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.” Ms Lance said.

“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.”

“As we strive to help all Australian families affected by blood cancer, we are grateful for the collaboration with District, which would help meet the growing demand on vital patient services in the post-COVID-19 environment,” Ms Lance added.

Utilising GPS geolocation, Bluetooth beacons and augmented reality, District is reimagining urban exploration and community running on a global scale, offering users around the world multiple types of challenges, interactive live leaderboards to track their progress and fun features such as points, badges and prizes to stay motivated and engaged.

“Staying active and connected has never been as important as now, so we encourage all Australians looking for a way to shake up their fitness routine and explore their city like never before to download District, register an account and take up the challenge.”

“Whether you’re a walker, casual runner or ready for some competition running there’s a race challenge for you, and that means there’s an opportunity to play your part in raising essential funds to help save lives,” Ms Lance said.

To learn more about District, go to rebrand.ly/districtraceau2020 or you can use the full link: https://exploredistrict.com/event/district-race-au-2020

To download District, go to Apple Store or get it on Google Play.

-ENDS-

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

Call to give blood generously in support of Australians living with blood cancer for National Blood Donor Week 14-20 June 2020

Call to give blood generously in support of Australians living with blood cancer for National Blood Donor Week 14-20 June 2020

Sunday 14 June, 2020

The Leukaemia Foundation is urging the national community to give blood generously in support of Australian blood cancer patients who are heavily reliant on donations.

It takes at least 9 people donating blood monthly through Lifeblood to treat just one person living with blood cancer. This National Blood Donor Week, Leukaemia Foundation General Manager of People Living with Blood Cancer Kathryn Huntley is stressing the need for more people to donate blood to help these Australians survive and live well with their diagnosis.

“More than 110,000 Australians are currently affected by blood cancer, and many of these people require regular donated blood products to manage their cancer, either as part of a life-saving treatment plan or to counter the side effects caused by the cancer itself or its treatment,” she said.

One 470ml blood donation unit includes red cells, plasma and platelets which are all separated out after donation. One acute leukaemia patient may need anywhere from 5 units to 15 units of blood every month. They could also need around 2 litres of platelets. And the reality is they could need both of these products for the duration of their diagnosis.

Research by Lifeblood shows that almost half of Australians who don’t give blood believe that road trauma is the leading cause of a person needing donated blood. Yet road trauma accounts for just two percent of Australia’s total blood usage – the least of all major causes – while cancer patients are the nation’s largest users of blood.

More than 29,000 blood donations are needed every week, and around 10,000 of them needed for cancer treatment.

“A huge 34 per cent of blood donations help treat people with cancer and blood diseases – that’s more than one third of all donations nationally – so when donations of this precious resource drop, the blood cancer community feels the impact more than almost any other,” Ms Huntley said.

“We are relying on the generosity of Australians to roll up their sleeves and donate to help boost and maintain healthy blood supplies, which are such a critical lifeline for Australians living with blood cancer.”

Ms Huntley said this National Blood Donor Week was a prime opportunity to step up and save lives.

“With 41 people every day diagnosed with a blood cancer in Australia and this number expected to increase to close to 100 people per day by 2035[1], we know more Australians will become critically reliant on blood products into the future,” she said.

“The need for blood products to support blood cancer patients doesn’t stop, so neither should blood donations, and that’s why we want to see more Australians making blood donation part of a regular routine rather than a once-off exercise – now more than ever.”

National Blood Donor Week runs from 14-20 June and includes World Blood Donor Day on June 14.

To find out more about how you can support Australians living with blood cancer, visit www.leukaemia.org.au.

To join the fight against blood cancer by making a blood donation, visit www.lifeblood.com.au.

– ENDS –

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

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Leukaemia Foundation CEO Bill Petch farewelled

Leukaemia Foundation CEO Bill Petch farewelled

Friday 12 June, 2020

The Leukaemia Foundation has farewelled Bill Petch after the conclusion of his contract as CEO following an outstanding nine years of dedicated service to the organisation.

Mr Petch first served as the CEO of the Leukaemia Foundation of Queensland in 2012 before being appointed CEO of the nationally unified organisation in 2016.

Leukaemia Foundation Board Chair Dr Carrie Hillyard today recognised and thanked Mr Petch for his invaluable contribution to the organisation, particularly throughout periods of significant organisational change and growth.

“Bill provided thoughtful leadership during the transition period of the national merger by reimagining an organisation which truly focused on individuals’ needs and how to improve outcomes for people living with blood cancer right across our country,” Dr Hillyard said.

“Bill’s commitment to unifying the Leukaemia Foundation was driven by a need to improve outcomes and advocate collectively for people living with blood cancer wherever they live.”

Dr Hillyard also commended Mr Petch for standing together with the blood cancer community and working constructively and collaboratively with all involved towards curing and conquering a complex set of diseases.

“Bill has been an influential voice in shaping awareness of the complexities and effects of blood cancers with government, industry, the media and the community,” she said.

“He commissioned strategic research to deeply understand the unmet needs of the Australian blood cancer community, which provided a platform to design a strategic approach for the newly-formed national Leukaemia Foundation.

“In 2018 under Bill’s leadership, the Leukaemia Foundation commissioned the State of the Nation: Blood Cancer in Australia report – a first-of-its-kind nationwide report revealing the true size, scale and impact of blood cancer and the lived experiences of people living with blood cancer in Australia today.

“Subsequently the Commonwealth of Australia entrusted the Leukaemia Foundation to form the Blood Cancer Taskforce, which has been instrumental in preparing the imminent National Action Plan for Blood Cancer – yet another first for our country.

“Bill’s leadership in creating a framework to bring the Blood Cancer Taskforce and National Action Plan to fruition is just one component of his extensive legacy.

“Bill has left an indelible mark in the Leukaemia Foundation’s history, creating a pathway to the Leukaemia Foundation’s long-term goal to see zero lives lost to blood cancer by 2035. Together with the broader blood cancer community, we are energised to continue this vision and implement the necessary projects that will see real change for more Australians affected by blood cancer.

“I want to take this opportunity to warmly thank Bill for his efforts to advance the Leukaemia Foundation’s cause and to wish him all the very best in his future endeavours.”

The Leukaemia Foundation will shortly commence a wide and thorough search for a new CEO.

Leukaemia Foundation General Manager of Supporters Alexandra Struthers has assumed the role of Acting CEO for the duration of the recruitment process.

– ENDS –

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Blood cancer leaders recognised in Queen’s Birthday Honours

Blood cancer leaders recognised in Queen’s Birthday Honours

Wednesday 10 June, 2020

The Leukaemia Foundation is today congratulating Professor Andrew Roberts, Dr Joy Ho and Distinguished Professor Patricia (Patsy) Yates for their appointments as Members of the Order of Australia (AM) in the 2020 Queen’s Birthday Honours.

Prof Roberts is a member of the Blood Cancer Taskforce, while Dr Ho and D/Prof Yates have contributed towards the work of the Taskforce through their roles on the Accelerating Research and Supportive Care working groups respectively.

Prof Roberts’ award recognises his contributions to advancing the understanding and treatment of blood cancers, and service to haematology and community cancer organisations.

Prof Roberts is joint leader of the Walter and Eliza Hall Institute’s Cancer Research and Treatments theme, a clinical haematologist at the Royal Melbourne Hospital and Peter MacCallum Cancer Centre, the Haematology Lead for Research and Education at the Victorian Comprehensive Cancer Centre, and the Metcalf Chair of Leukaemia Research at the University of Melbourne.

The Queen’s Birthday Honours also recognised Prof Roberts’ significant research contributions to the development of a new class of anti-cancer medicine that is now used to combat certain types of leukaemia. Professor Roberts led world-first trials in Melbourne of the BH3-mimetic drug venetoclax showing it could safely kill leukaemia in chronic lymophytic leukaemia (CLL) patients. Venetoclax is now accessed by thousands of patients in Australia and around the world.

Sydney-based haematologist Dr Ho was recognised for significant service to medical research, to haematology, and to professional bodies.

Dr Ho is a Clinical Professor at the University of Sydney and a Senior Staff Specialist, Royal Prince Alfred Hospital. She has an extensive history working in myeloma, with interests in molecular pathophysiology, immunolopathology and clinical trials.

Brisbane-based D/Prof Yates was honoured for significant service to tertiary education, to cancer and palliative care nursing, and to medical research.

D/Prof Yates is the Executive Dean of the Faculty of Health at QUT, Brisbane. A registered nurse, D/Prof Yates is also Co-Director of QUT’s Centre for Healthcare Transformation and holds visiting appointments as Lead Researcher for the Cancer Nursing Professorial Precinct at Royal Brisbane and Women’s Hospital, Director for Queensland Health’s statewide Centre for Palliative Care Research and Education, and Visiting Fellow at Princess Alexandra Hospital. She is also a Senior Fellow of the Centre for Health Outcomes and Policy Research, University of Pennsylvania, and the current President of the International Society of Nurses in Cancer Care.

Australia’s Blood Cancer Taskforce, formed last year, includes 29 of Australia’s leading blood cancer experts and stakeholders. With the help of several working groups, the Taskforce is currently working to deliver the country’s first National Strategic Action Plan for Blood Cancer with an aim to progress towards a goal of zero lives lost to blood cancer by 2035.

Leukaemia Foundation General Manager of Blood Cancer Partnerships Tim Murphy said the Queen’s Birthday Honours for Prof Roberts, Dr Ho and D/Prof Yates was recognition of their significant individual efforts to improve the lives of people living with blood cancer.

“The development of venetoclax and its progression to clinical use was an outstanding triumph for blood cancer treatment in Australia, offering a tablet replacement for chemotherapy for many patients here and worldwide. Professor Roberts’ role in this incredible world-first innovation cannot be understated,” he said.

“Professor Roberts truly champions the role of research in continuing to improve treatment and care provided to people living with blood cancer, and his contributions highlight the immense potential of Australian blood cancer research and clinical trials and the need to further invest in these areas.

“The Leukaemia Foundation would also like to sincerely congratulate Dr Ho and D/Prof Yates for this formal recognition of for their important medical research and education work, and thank them for applying their invaluable wealth of knowledge and expertise to the fight against blood cancer. We are extremely grateful to both Dr Ho and D/Prof Yates for shining a spotlight on this complex set of diseases through the range of communities, groups and institutes they are involved with.

“We are privileged to have all three of these dedicated professionals helping us to deliver the National Strategic Action Plan, which provides a blueprint to help tackle key issues facing the blood cancer community.”

The Taskforce was established in September 2019 with the support of Federal Health Minister, the Hon. Greg Hunt MP, and followed the release of the first-of-its-kind State of the Nation: Blood Cancer in Australia report which identified the true size, scale and impact of blood cancer today and into the future.

Find out more here about the report and the Leukaemia Foundation’s response My Life Counts – a summary of key findings, statistics and recommendations for reducing the impact of blood cancer in Australia.

– ENDS –

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