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Unprecedented funds for cutting-edge research into myeloma

Unprecedented funds for cutting-edge research into myeloma

September 18, 2018

Australian researchers will share in $10 million of funding toward developing groundbreaking treatments to help people living with rare cancers and diseases, including myeloma.

The funding will be shared across six clinical trials and will be conducted by researchers at Monash University, the University of Melbourne, University of Sydney and La Trobe University.

Leukaemia Foundation CEO Bill Petch said the research would give hope to Australians living with myeloma with the aim to help to save and extend lives.

Currently in Australia approximately 10,000 people are living with myeloma, and each year just over 1,800 new cases are diagnosed (equivalent to five people every day).

”Myeloma is a disease that has seen incredible improvements in treatment over the past ten years, however, as incidence continues to rise, more needs to be done,” Mr Petch said.

“The Leukaemia Foundation welcomes this funding which will help to improve, extend and ultimately save lives,” he said.

The funding is part of a Federal Government $248-million, five-year commitment toward research into rare cancers like myeloma, and an additional $50 million commitment toward research into cancer genetics.

Mr Petch said the Leukaemia Foundation strongly encourages ongoing government support into cutting-edge genomic and precision medicine research – a growing area of medicine showing promising breakthroughs in cancer treatments.

“The Leukaemia Foundation recognises these areas of research are spearheading major advancements into treatment for these diseases.”

“We need this type of funding to continue to make breakthroughs in this research so we can work towards a future free from myeloma, and all blood cancers,” he added.

Australians urged to seek support this World Lymphoma Awareness Day

Australians urged to seek support this World Lymphoma Awareness Day

Friday, 14 September 2018

Australians living with lymphoma are surviving more but experiencing a fear of relapse, anxiety, depression and isolation according to a recent report.

And despite survival rates jumping from just 52 per cent in the early 1980s to 76 per cent today, those diagnosed in regional Australia are still battling access to specialist treatment and financial barriers, according to the Global Lymphoma Coalition’s 2018 global patient survey, Australian report.

Lymphoma is one of the most commonly diagnosed cancers in Australia with one in 36 Australians expected to be diagnosed with a form of the disease by their 85th birthday.

Leukaemia Foundation CEO Bill Petch said the outcomes of the Global Lymphoma Coalition’s report mirror the Leukaemia Foundation’s recent stakeholder research which confirms continued support for Australians living with lymphoma is crucial to improve their access to treatment and well-being after treatment.

“Fatigue and the fear of relapse are understandably very real to those living with blood cancer and it’s important that these people access organisations like the Leukaemia Foundation for support during this time,” Mr Petch said.

“The Leukaemia Foundation offers regional families access to free accommodation close to treatment centres in most capital cities and can also provide transport to medical appointments,” Mr Petch said.

“It’s these types of services that can really help support those people living with the disease, and help alleviate the added stress of commuting through city streets to appointments,”

“We know people living in regional and rural areas of Australia really appreciate this type of support – but we also offer the same transport service to metropolitan blood cancer patients. This all adds to improving the well-being of patients.” he added.

In the past decade alone, the Leukaemia Foundation has provided more than 500,000 nights of accommodation to these families and its transport service has travelled more than 10 million kilometres.

The Global Lymphoma Coalition Report also identified having access to disease specific information via websites as positively influencing their feelings of confidence in determining the trustworthiness of information about their health condition and treatment choices, and supported their communication with their doctor.

Mt Petch said the Leukaemia Foundation is acutely aware of the need for people living with a blood cancer to have access to credible and trusted information which empowers people to make informed decisions about treatment options and accessing new therapies.

“We are working to deliver a new information platform for all people living with blood cancer which is a one-stop-shop for information and resources’.

This year, World Lymphoma Day is on Saturday, September 15 and the global theme is Small Things Build Confidence. For more information, visit www.lymphomacoalition.org.

To find out more about lymphoma and the Leukaemia Foundation.

 

Snapshot of Lymphoma in Australia

  • It is estimated that Lymphoma will remain the 6th most commonly diagnosed cancer in 2017 with over17 people newly diagnosed every day (6, 232 per year).
  • In 2017, it is estimated that the risk of an individual being diagnosed with lymphoma by their 85th birthday will be 1 in 36 (1 in 30 males and 1 in 45 females). While the mortality rates of an individual dying from lymphoma by their 85th birthday will be 1 in 146 (1 in 114 males and 1 in 196 females).
  • In 2009–2013, individuals diagnosed with lymphoma had a 76% chance of surviving for 5 years (75% for males and 77% for females) compared to their counterparts in the general Australian population. Prior to that, between 1984–1988 and 2009–2013, 5-year relative survival from lymphoma improved from 52% to 76%.
  • According the Lymphoma Coalition’s 2018 Global Patient Survey – Australian report,
  • Overall, fatigue, changes in sleep patterns and trouble concentrating were the most frequently reported physical conditions.
  • The most commonly reported medical conditions were neutropenia and tingling during treatment, and numbness and tingling were the most frequent medical issues reported after treatment.
  • Changes in relationships with loved ones, friends or co-workers/social life and anxiety were the most commonly reported psychosocial issues during treatment. Fear of relapse was very common after treatment.
  • As a result of their lymphoma, most respondents in Australia have experienced changes in their lifestyle and almost half have experienced changes in their independence.
  • Fear of relapse was experienced by respondents during treatment with reported levels peaking significantly after treatment. Some respondents even reported it at 8+ years after treatment. Fear of relapse was associated with feelings of anxiety, depression and isolation, which were not often discussed with the doctor.
  • Respondent’s reports of fatigue peaked immediately following treatment, as well as 3-5 years and even 8+ years after treatment. Fatigue affected respondents’ independence, but more so their lifestyle, with general activity suffering a large impact.
  • Respondents in Australia commonly reported that financials constituted a barrier to treatment, followed by access to treatment centre/prohibitive travel. There were barriers found to be associated with respondents’ area of residence. For example, specialty physician available locally was identified as a barrier more frequently by respondents in rural areas compared to urban and suburban areas.

Leukaemia Foundation continues to fight for Australians living with blood cancer

Leukaemia Foundation continues to fight for Australians living with blood cancer

September is Blood Cancer Awareness Month

Every day another 35 Australians are diagnosed with a blood cancer or disorder, and according to the latest analysis from the Leukaemia Foundation, this number continues to rise. Leukaemia, lymphoma and myeloma and the blood disorder myelodysplastic syndrome (MDS) are four of Australia’s top 20 most diagnosed cancers. In the past ten years each disease has shown a jump in diagnosis rates, from 23 percent for MDS, to as high as 44 percent for myeloma[1].

The Leukaemia Foundation plays a vital role in supporting Australians affected with blood cancer including advocating for new therapies and treatments as well as providing educational, emotional and practical support such as transport and accommodation.

Over the past year alone, the Leukaemia Foundation has provided more than 1.5 million kilometres of transport and close to 55,000 nights of free accommodation to regional families forced to relocate to capital cities for life saving treatment.

The staggering figures are a reminder of the extensive support that is needed for people affected with blood cancer in Australia as the Leukaemia Foundation welcomes Blood Cancer Awareness month this September by hosting the first national Blood Cancer Conference on Saturday 8 September.

As blood cancer diagnoses rates continue to rise and demand for its service escalates, the Leukaemia Foundation is turning its focus this month to ensuring the latest blood cancer information is available and accessible to all people affected by the disease.

The 2018 National Blood Cancer Conference brings together sixteen of the nation’s leaders in blood cancer research, treatment, and wellbeing in a forum to share their expertise and knowledge, with a theme of transplant and survivorship. The event will be held at the Melbourne Convention and Exhibition Centre as well as through an online education hub available on the Leukaemia Foundation’s website. To access this information visit www.leukaemia.org.au.

Leukaemia Foundation CEO Bill Petch said the conference was part of the Leukaemia Foundation’s commitment to provide better and equal access to the latest blood cancer information to all Australians.

“There are 60,000 Australians currently living with a blood cancer, and sadly an Australian loses their life to blood cancer every two hours,” Mr Petch said.

“We feel that there is much more to be done and hopes to one day see a future that is free of this deadly disease,” he said.

“We’ve taken a holistic approach to the content of this conference to educate members of the public interested to know more about blood cancer; and to assist people living with blood cancer to become actively engaged in managing their wellness and navigating the health system,” Mr Petch said.[1]

“Attending the conference is an opportunity for people living with blood cancer and their families to connect with other people in similar positions and give each other the much needed peer support to reduce the feelings of isolation. It also caters to carers of people living with blood cancer providing an opportunity to come together to share their unique experiences and challenges.”

The conference is currently at full capacity but all Australians will be able to access the information through an online education hub available on the Leukaemia Foundation’s website.

As part of Blood Cancer Awareness month the Leukaemia Foundation is encouraging Australians to stand up and support people living with blood cancer by sharing their message to blood cancer in just five words, using the hashtag #5words2bloodcancer.

 

[1]Australian Institute of Health and Welfare (2017). Cancer Compendium: information and trends by cancer type. Retrieved from https://www.aihw.gov.au/reports/cancer/cancer-compendium-information-and-trends-by-cancer-type/report-contents/leukaemia-in-australia