Save Our Sons are pleased that the House of Representatives Standing Committee on Health, Aged Care and Sport, which is Chaired by Trent Zimmermann MP and Dr Mike Freelander MP, has commenced a Parliamentary Inquiry into new drugs and novel medical technologies.

The Inquiry will include a particular focus on access to the treatment of rare diseases and conditions where there is high and unmet clinical need, such as for Duchenne and Becker muscular dystrophy.

As the community is aware, Save Our Sons have advocated very strongly for action on the very important matters covered by the Inquiry. This has included briefing Mr Zimmerman and Mr Freelander directly in person, as well as other key and influential elected representatives, and the submission of detailed and substantial written briefings and documents for their consideration in this regard.

The hard work and advocacy of Rare Voices Australia, the umbrella body for rare diseases in Australia of which we are a member, must be recognised and acknowledged. The office of the Minister for Health noted the influence of the National Strategic Action Plan for Rare Diseases drafted by Rare Voices Australia and their advocacy. Their leadership on these most important matters was crucial.

Save Our Sons will follow Rare Voices Australia’s lead and will be making a detailed submission addressing the Inquiry’s Terms of Reference. We will consult closely with the Duchenne and Becker community in Australia, and will also seek to collect personal stories and experiences from our community that relate to the Terms of Reference in order to make our submission as impactful as possible and reflect the views of our community.

The Inquiry will consider the following topics so that Australia continues to be well positioned to access new drugs and novel medical technologies in a timely manner and respond to emerging global trends:

  1. The range of new drugs and emerging novel medical technologies in development in Australia and globally, including areas of innovation where there is an interface between drugs and novel therapies;
  2. Incentives to research, develop and commercialise new drugs and novel medical technologies for conditions where there is an unmet need, in particular orphan, personalised drugs and off-patent that could be repurposed and used to treat new conditions;
  3. Measures that could make Australia a more attractive location for clinical trials for new drugs and novel medical technologies; and
  4. Without compromising the assessment of safety, quality, efficacy or cost-effectiveness, whether the approval process for new drugs and novel medical technologies, could be made more efficient, including through greater use of international approval processes, greater alignment of registration and reimbursement processes or post market assessment.

Save Our Sons will continue to advocate to ensure that genuine and meaningful outcomes eventuate from the Inquiry and will be in close and regular contact with the Committee Chair and Deputy-Chair to make sure they hear your voices loud and clear.

Please support us in representing you by becoming involved in our submission-making process. Follow our Social Media closely, and members of our team will also be making direct contact with community members through more traditional methods of communication. Should you want to proactively send us your thoughts, stories, or material for use please email us at info@saveoursons.org.au and place Parliamentary Inquiry in the subject line.