TAMS urges our community and their families to contact their local MPs and Senators to support urgent reform of Australia’s Health Technology Assessment (HTA) system.
The HTA system determines whether medicines receive public funding, including through the Pharmaceutical Benefits Scheme (PBS). However, it does not adequately assess innovative treatments for rare diseases or small patient populations.
For people with rare diseases, this means:
- waiting considerably longer than patients overseas to access new treatments
- being unable to access a medicine through the PBS because it is funded only for a more common condition
- having to pay significantly more to access treatment privately
- having few or no pathways to access promising emerging therapies in Australia.
As new treatments for mast cell activation disorders emerge, reform is essential to ensure Australians are not disadvantaged due to the rarity of their condition.
The reform process is at a critical stage. Without strong, coordinated advocacy from rare disease communities, progress may stall, or the reforms may not achieve their intended outcomes due to limited understanding of the challenges faced by people living with rare diseases and disorders.
Rare Voices Australia has provided a simple letter guide. Please personalise the letter with your experiences and send it to your local MP and Senators.
Your letter can help show the Australian Government why it must:
- fund the implementation of recommended HTA reforms through the upcoming Mid-Year Economic and Fiscal Outlook
- immediately release the HTA Implementation Advisory Group’s Final Report and Roadmap
- ensure timely and equitable access to effective treatments for people living with rare diseases.
Please include your address so your representatives know you are a constituent. Even a brief personal account can highlight the real impact of delayed, unaffordable, or unavailable treatments.
Every letter matters. A strong and coordinated response is urgently needed to ensure these reforms progress and are properly informed by lived experience.
Download the letter template (MS Word).
Find your MP: All current Australian Members of Parliament and Senators.
