The Pharmaceutical Benefits Advisory Committee (PBAC) will consider KOSELUGO (selumetinib) for the treatment of paediatric patients aged 2 years and above, with neurofibromatosis type 1 (NF1) who have symptomatic, inoperable plexiform neurofibromas (PN) at its November 2022 meeting!
As part of the evaluation process, the PBAC is interested in hearing from people and families with NF1 and inoperable plexiforms in particular, to better understand the impact of the condition and the challenges patients and families face.
The PBAC invites patients, caregivers, family members and friends to share their views via their online portal, but you can also send them an email directly if you find that easier.
Consumer comments are a way for the PBAC to understand issues that are important to patients and caregivers, and comments that contain specific information about why treatment is important based on lived experiences, needs and preferences can impact the PBAC’s advice.
If you would like to make a comment, but are not sure what to say, you can read some useful information here from the Patient Voice Initiative, or call one of the support co-ordinators on 02 9713 6111
PBAC CONSUMER COMMENTS DOS AND DON’TS
WHY IS YOUR VOICE IMPORTANT?
Evidence Matters
When governments make decisions about investing in healthcare and new treatments, they take into account the cost. However, decisions are not made based on price alone. Instead, they try to maximise the benefit to the community by choosing treatments that are good value. Evidence from clinical trials and economic models provides information about the value of a treatment.
Weighing Up Outcomes
Good value means different things to different people. For example, a researcher may value an outcome of treatment differently to a doctor who in turn, may value it differently to you. This is why decision-makers need your input when they are considering investing in a new treatment or changing the way treatment is provided.
Make Better Decisions
Decision-makers need to know what matters most to patients and carers like you and learn from your insights about how and when a treatment may best be used. They want to know if treatments have value beyond clinical trials and if they will make a difference to patients’ daily lives. Patient and carer input can help them understand the true value of a treatment and make better decisions.
HAVE YOUR SAY
Join us in-person or online at our upcoming Community Information Day on Saturday 20 August.
Hear from Dr Jim Whittle about KUSOLEGO and receive information from Rare Voices Australia about how to make your comment count.
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