'First of its kind' blood cancer report includes opportunities for improved treatment for MDS | Leukaemia Foundation

‘First of its kind’ blood cancer report includes opportunities for improved treatment for MDS

The landmark report, State of the Nation: Blood Cancer in Australia, was released by the Leukaemia Foundation last month includes opportunities for improvement in treatment and care for MDS. 

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 and it identifies current challenges and risks for people living with MDS, as well as opportunities for improvement in treatment and care. 

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, provides hard evidence to support the Leukaemia Foundation’s new stretch goal of Zero Lives Lost to Blood Cancer by 2035

Key insights for people living with MDS 

  1. Because GPs see MDS so infrequently and symptoms are associated with a range of conditions, there are risks of wrong tests being ordered and for referrals to the wrong specialists, resulting in delays to diagnosis or treatment. 
  2. Written care plans are not consistently given.  
  3. Enrolment in clinical trials are ad hoc.  
  4. Inconsistent referrals to patient support and information about disease.  
  5. A range of therapies used for the treatment of cytopenias in MDS is currently in use overseas but hasn’t yet been submitted to the Australian Pharmaceutical Benefits Scheme (PBS) for approval.  
  6. Due to limited data, the economic costs of people diagnosed with MDS are not included in the Report, with estimates likely to be conservative. 

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 139 of the Report, an optimal care pathway for MDS 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. 

Posted 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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