Calling all ROS1ders! Please help Australians access Entrectinib

For the first time, Australian ROS1+ lung cancer patients may have affordable access to Entrectnib. Currently, ROS1 patients cannot get access to Entrectnib outside of a clinical trial.

We need the help of ROS1ders to make it happen.

From 1 February 2020, Australian who have ROS1+ lung cancer may be able to purchase the medication through self funding as well since the Therapeutic Goods Administration has made a recommendation to the Australian Government for this drug to go on market.  Unfortunately, the Australian private health insurance industry does not pay for the cost of medicines. This means that most Australians would not realistically be able to afford the cost of Entrectinib without Government subsidy.

An application for Government subsidy under the Pharmaceutical Benefits Scheme (PBS) has been made. The Pharmaceutical Benefits Advisory Committee will make a recommendation to the Australian Government, on the basis of scientific evidence and community experiences, as to whether the Government should subsidise the cost of Entrectinib.

We are calling on the international ROS1der community for support!  If you are a patient, family, friend or interested community member, you can help us by simply emailing the Pharmaceutical Benefits Advisory Committee (PBAC) at before 12 February 2020. 

What to include in your email:

    • Explain why you support this application to the PBAC for a positive recommendation to list Entrectinib on the Pharmaceutical Benefits Scheme (PBS)
    • Share you story with ROS1 and Entrectnib (or targeted therapy in general)
    • Explain how Entrectinib has made a difference in your life and those around you
    • If you have not taken Entrectinib, explain what difference having access to Entrectinib would have made for you and/or your family

Whether it’s your personal story or the story of someone close to you, every story you share about Entrectinib will help give future ROS1+ lung cancer patients in Australia another possible treatment and immeasurable hope.

Thank you for your help!

Lillian Leigh
Australian ROS1der and patient research advocate

Published by

Gray Connections

I was diagnosed with non-small cell lung cancer in May 2011. The cancer became metastatic in October 2011. No, I never smoked anything (except a salmon). I've had no evidence of disease since January 2013 thanks to precision medicine, clinical trials, and other patients. ANYONE can get lung cancer. Using my engineering degrees (MIT SBME 1978, Caltech Aeronautics MS 1984 and ENGR 1986), I enjoyed a 20-year career in aerospace systems engineering as a technical translator of sorts: I researched a scientific or engineering subject and helped others understand how this new gizmo could benefit them. In the time I have left, I want to use my skills to help others who have lung cancer, and increase the visibility and knowledge of lung cancer among those who don't. I also study brain research, enjoy traveling, write science fiction, and geek out about all sorts of science stuff.