The recent CLL /SLL patient education day in Sydney was a very informative and interactive event that aimed to give attendees the opportunity to understand the many treatment options that are available or yet to be approved for both CLL and SLL.
This meeting was also an opportunity for many patients and their families to share their experiences and concerns with leading global and local experts.
Panel of experts – Associate Professor Judith Trotman, Dr Bill Wierda, Dr Adrian Wiestner, Dr Brian Koffman
The following words from Dr Brian Koffman (CLL Society USA) is the perfect summation as to why you need to be there in person.
There is nothing like being at the live meeting. Nothing.
You can’t mail it in. You can’t send your team.
Lymphoma Australia and all attendees would like to say thank you very much to our international guests for sharing your expertise with all of us. We would also like to thank Associate Professor Judith Trotman from Concord Hospital for your ongoing dedication to our local patients and ensuring we understood the status of how access to treatments in Australia and global therapies worked.
To view the day please watch here
New treatments are available but how do Australians access them?
Whist it was exciting to hear about new and novel therapies that are becoming available for patients it is not always easy to get access. Until a treatment is recommended by the PBAC in Australia it cannot be listed as a subsidised treatment on the PBS.
In Australia this process can sometimes take many months or years but the community and even more importantly patients do have the power to educate our key decision makers.
The next PBAC meeting is on the 15th of November and two CLL treatments are being considered for Australian patients. Up until the 7th of October you can make a submission about your journey/experience as a CLL patient/carer.
Agenda for PBAC November MeetingÂ
Consumer Submission Online Form
http://www.health.gov.au/internet/main/publishing.nsf/Content/PBAC_online_submission_form
This SURVEY will be used to help you Â
Treatments for CLL and SLL are changing. Chemotherapy is being replaced by new and novel therapies that are extending lives and making this cancer a chronic disease.
Therefore it is important we let our decision makers KNOW patients are living long and productive lives because of these new therapies.
The Institute of Choice at the University of South Australia is conducting important research to assist with making new CLL treatments available in Australia.
The research will be presented to the Australian Federal Government so that they can better understand the needs of CLL patients. Â If you have CLL, or know of someone who does, they can complete the research survey online at http://cllsurvey.choicestudies.com
