Join us in advocating for change

Australia’s current HTA (Health Technology Assessment) system is not fit for purpose when evaluating emerging and innovative therapies for small populations like rare diseases. It can create challenges with timely access to therapies and emerging therapies.

Our peak body, Rare Voices Australia (RVA), has launched an advocacy campaign and is asking rare disease communities to contact their local Members of Parliament and Senators about the need for reform. RVA is asking for the Government to allocate funding in the MYEFO due in December. This is being developed at the moment.

Timely and equitable access to effective treatments is critical. TSA and its committee members have already contacted relevant politicians. However, Members of Parliament and Senators need to hear this message from a range of voices and perspectives.

Below is an adaptation of a letter we have drafted that you can copy, complete and send to your representatives. You simply need copy it into an email/letter, add/change the details highlighted in orange and make any other changes you wish to. 

You can search for your MP using your postcode here

If you want to join us in advocating for change, please email or send a letter to your representatives. We appreciate your support.

[Date]

The Hon [_______] MP / Senator the Hon [_______] (You can search for your MP or a Senator using your postcode on the Australian Parliament House website. )
Member for/Senator for [_______]

[Address]

Dear [_______],

I am writing as a member of a family living with the rare disease Tuberous Sclerosis Complex (TSC) to ask for your help in ensuring that all people in Australia living with a rare disease can get access to medicines they need when they need them.

Currently in Australia people living with a rare disease like TSC often wait much longer than people overseas to get new medicines. In some cases, a medicine may be available on the PBS for another condition but not for the rare disease for which it may also be effective. For some rare diseases, there may be no pathway to access an effective medicine through the PBS at all.

Share your experience

You can tell your own story in a few sentences. You might like to use one or two of these examples:

• Waiting for a treatment:
  “I have been waiting [X years] for access to [treatment]. It has been available to people overseas for [X years].”
• Treatment not available in Australia:
  “There is [treatment] for TSC that is available overseas, but I cannot access it in Australia. This means [briefly explain how this affects you or your family].”
• Treatment that has helped you:
  “I have had access to [treatment] through a clinical trial or another pathway, and it has helped me by [briefly explain]. I want other people with TSC who could benefit from this treatment to be able to access it too.”
• Treatment that you have to pay for:
  “My doctor has recommended [treatment] for me/my family member, but it is not subsidised through the PBS for TSC. We have to pay for it ourselves, which costs approximately [$X].”
• Difficulty accessing treatment:
  “I/my family member could benefit from [treatment], but we have had difficulty getting access because [briefly explain what happened].”
• Your own experience:
  “Living with TSC has affected me/my family by [briefly describe]. Access to effective treatment is important to us because [briefly explain].”

You do not need to include medical details or use any of these examples. Just explain what happened to you or your family and why access to treatment matters.

I am requesting your support to ensure people in Australia living with a rare disease like TSC are treated fairly and can access effective treatments when they need them. The government should now implement the work already completed to improve access to medicines by:

Allocating funding in the upcoming MYEFO to ensure that the recommendations of the Accelerating Access to the Best Medicines for Australians Now and into the Future report and the Enhance HTA report are implemented in line with advice provided by the HTA Implementation Advisory Group.

Immediately releasing the Implementation Advisory Group’s Final Report and Roadmap.

Yours sincerely

[Include your contact details, including your address] This is very important so that they know you are a constituent.