Getting Started With A Letter to Your Federal MP

For those who plan to make first contact with their MP but are unsure how to get started, we can assist with the following. One of our FA community has provided the ‘top and tail’ template below. It enables you to edit as you wish but most importantly, include a middle paragraph of your own detailing your personal FA story and circumstances.
 
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Dear “relevant MP”,

I hope this email finds you well.

I am writing to ask for your support in advocating for the urgent listing of Skyclarys (omaveloxolone) on the Pharmaceutical Benefits Scheme (PBS) for Australians living with Friedreich’s Ataxia (FA).

When the Pharmaceutical Benefits Advisory Committee (PBAC) recommended Skyclarys for PBS listing on 19 December 2025, it gave families like ours genuine hope. It recognised that Australians living with this devastating, progressive neurological disease should have access to the first treatment shown to slow disease progression. Unfortunately, despite this recommendation, negotiations between the Australian Government and Biogen have not yet resulted in a PBS listing, leaving patients and families desperately waiting while valuable time is lost.

For our family, this is far more than a policy issue.

[PERSONAL STORY]

For people living with Friedreich’s Ataxia, time is precious. Every month without treatment can mean further irreversible loss of mobility, balance and independence.

Skyclarys offers hope—not a cure, but the possibility of slowing disease progression and preserving independence for longer. For xxxxxxxx, that could mean more years of school or studying, working, contributing to society, maintaining their quality of life and reducing the long-term burden on families and the healthcare system.

Without PBS listing, this treatment remains out of reach for almost every Australian family affected by FA. Access to a life-changing medicine should never depend on a person’s ability to pay.

Our family has spent many years raising awareness and supporting research into Friedreich’s Ataxia because we believe that no family should face this disease without hope. We respectfully ask that you lend your voice to this cause by encouraging the Government and Biogen to reach an agreement that ensures timely and affordable access to Skyclarys for all eligible Australians.

Your advocacy could make an enormous difference to families like ours, who are watching time slip away while waiting for access to a treatment that has already been recognised as clinically valuable.

Thank you for taking the time to read our letter and for your ongoing commitment to improving healthcare for Australians. We would be grateful for any support you can provide in helping secure PBS access to Skyclarys.

Kind regards,

NAME

[Optional] (On behalf of xxxxxx, an Australian citizen living with Friedreich’s Ataxia)