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Support for submission to MSAC for genetic testing for blood cancers

In November 2021, the Leukaemia Foundation provided consumer comments in relation to the Medical Services Advisory Committee (MSAC) application 1684 – Genetic testing for variants associated with haematological malignancies.

The Medical Benefits Scheme (MBS) reimburses certain diagnostic tests for blood cancer including full blood counts, immunohistochemistry, and cytogenetic testing, which can provide treating clinicians with an initial diagnosis and subtype classification.

Dr Peter Diamond
Dr Peter Diamond, the Leukaemia Foundation’s Head of Research, Policy and Advocacy

However, for many blood cancer subtypes, these tests may not give the detailed, granular genetic information required to inform treatment selection and choices of new targeted therapies. For this, genetic testing of the cancer is required. This is generally not reimbursed by the MBS for all blood cancers except in very specific circumstances and requires out-of-pocket payment.

For many patients, genetic testing is not offered, possibly due to the lack of reimbursement.

A submission to the Medical Services Advisory Committee calls for genetic testing to be reimbursed.

Research performed on behalf of the Leukaemia Foundation in 2019, including a survey of 3200 people living with blood cancer, their families and carers, found that less than 30% of patients had a genetic or genomic test of their blood cancer¹.

Dr Peter Diamond, Head of Research, Policy and Advocacy for the Leukaemia Foundation, said, “to help us provide comments to MSAC that reflect the everyday experiences of people living with blood cancer, we sought further direct consumer feedback of our consumer database”.

“We received 374 responses in five days, reflecting the considerable patient interest in this issue.”

Of the responses, only 23% had a genetic test and 17% were not sure. Also, some responses indicated a misinterpretation of the term ‘genetic testing’ (as separate from testing for hereditary factors). And of those who did not have a test, 86% said their physician had not offered or suggested it.

The Leukaemia Foundation also sought advice from the Blood Cancer Taskforce which developed the National Strategic Action Plan for Blood Cancer (National Action Plan) that was released in 2020. It identifies the importance of genetic testing for accurate subtype diagnosis and the subsequent treatment of blood cancer patients with targeted therapies.

“This application to MSAC aligns with Action 2.3 of the National Action Plan, which recommends that precision medicine become standard of care in Australia, including genetic and genomic testing as required,” said Dr Diamond.

“The Leukaemia Foundation strongly supports the application to MSAC for genetic testing for variants associated with haematological malignancies in its current form,” he said.

The Leukaemia Foundation’s comments were submitted to MSAC in November 2021 for the first stage of the consultation/assessment process. This process is ongoing.

1. Insight Economics, 2019, State of the Nation: Blood Cancer in Australia, p. 55

Last updated on September 16th, 2022

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.