'First of its kind' blood cancer report proposes new optimal care pathway for people with lymphoma | Leukaemia Foundation

‘First of its kind’ blood cancer report proposes new optimal care pathway for people with lymphoma

As one of the three main blood cancers, lymphoma features prominently in the Leukaemia Foundation’s State of the Nation: Blood Cancer in Australia report, released last month. 

The report was developed by an independent research firm, Insight Economics in consultation with the Leukaemia Foundation. 

It 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 a blood cancer.  

The result is a statistically significant snapshot of the experiences of people living with a blood cancer in Australia today. 

For the first time, this report helps us to understand the true scale of blood cancer in Australia by analysing the impact of blood cancers collectively, addressing the following key areas: 

1.    Understanding the scale of blood cancer. 

2.    Economic costs of blood cancer. 

3.    Challenges facing people living with blood cancer. 

4.    Opportunities for improving outcomes for people living with blood cancer. 

5.    Plan of action for achieving Zero Lives Lost to Blood Cancer by 2035. 

The report, published during Blood Cancer Awareness Month in September 2019, provides hard evidence to support the organisation’s new stretch goal of Zero Lives Lost to Blood Cancer by 2035.  

If nothing was to change, the report concluded that by 2035 more than 4500 people would lose their lives to lymphoma, based on current survival rates.  

Key insights for people living with lymphoma: 

The report’s optimal care pathway for NHL recommends referral to a haematologist within two days for people with symptoms, compared to within four to six weeks for all other blood cancer subtypes. 

  • NHL patients have a poorer understanding of treatment plans 

Understanding their treatment plan was marginally poorer among people living with NHL but otherwise was consistent across other blood cancer sub-types and care settings.  

  • Higher number of lymphoma patients reported out-of-pocket costs 

A higher number of people living with lymphoma reported out-of-pocket costs when it comes to care – 10% higher than any other blood cancer sub-type.  

  • Need to improve access to therapies available overseas 

There are medicines in use overseas and that had early evidence of being beneficial, but there have been substantial delays between that evidence and listing of the drugs on the Pharmaceutical Benefits Scheme, or a lack of market incentive to make a submission to the Pharmaceutical Benefits Advisory Committee. These therapies for lymphoma include: 

Our Vision 

In response to these insights, the Report recommended the Leukaemia Foundation focus on four synergistic priorities, to ensure the challenges can be addressed: 

  1. Empower patients. 
  2. Enable access. 
  3. Accelerate research for cures. 
  4. Catalyse health reform.  

In addition, on page 133 of the Report, an optimal care pathway for lymphoma is provided detailing a standardised approach to care which will ensure all Australians have access to life-saving and life-enhancing therapies regardless of means. 

Click here to read the full report. 

Last updated on October 2nd, 2019

Developed by the Leukaemia Foundation in consultation with people living with a blood cancer, Leukaemia Foundation support staff, haematology nursing staff and/or Australian clinical haematologists. This content is provided for information purposes only and we urge you to always seek advice from a registered health care professional for diagnosis, treatment and answers to your medical questions, including the suitability of a particular therapy, service, product or treatment in your circumstances. The Leukaemia Foundation shall not bear any liability for any person relying on the materials contained on this website.

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