WE NEED YOUR PERSONAL STORIES…

As reported recently, the Federal Government has established a Parliamentary Inquiry into new drugs and novel medical technologies.

SOSDF had been advocating for such an Inquiry over many months, conveying our community’s feeling that current bureaucratic, regulatory and cost impediments are causing ongoing problems with the approval of clinical trials in Australia thus undermining efforts to ensure Australian children have access to the next phase of clinical trials for new gene therapies onshore, as well as the approval process for new drugs and novel medical technologies not being efficient enough and leading to significant delays in effective treatments reaching our shores. We understand how important these issues are to the Duchenne and Becker community in Australia.

Our recently released keynote Report into Duchenne and Becker covers a lot of the issues which will be considered by the Inquiry, consistent with our ongoing work as part of our advocacy campaign which includes a call for meaningful action pertaining to:

  • Getting Treatment Earlier
  • Getting the Care that is Needed
  • Funding Future Therapies, and
  • Improving Access to Clinical Trials.

Our advocacy work, including the recent launch of our landmark keynote report in Canberra plus other important and impactful SOSDF activities and programs, has opened a number of doors for our community and has now given us a priceless opportunity to influence and shape the outcomes of the Inquiry process. However, we must move quickly as the submission process closes on 13 October 2020.

SOSDF will continue to brief key figures such as the Chair and Deputy-Chair, Mr Trent Zimmerman MP and Dr Mike Freelander MP, as well as other influential elected representatives.

Importantly, SOSDF know that it is your personal stories that will move and shift politicians (who are human beings after all) the most – and is what will be most powerful and effective in terms of the considerations of this Inquiry. It is your lived experiences that they are most interested in, the real impacts on patients, families, and carers.

If you are prepared to provide us with your story going to your family’s (and child/ren’s) personal, lived experiences and frustrations with the current research, clinical trial system, and treatment approval processes then please contact us with your details and we will arrange to call and interview you. Alternatively, you can email us 300 to 500 words and we will work to include this (where possible) in our submission – if you don’t want to be identified as part of that process please let us know. Emails can be sent to info@saveoursons.org.au and please place Parliamentary Inquiry in the subject line.

Your personal and “lived experiences” will make all the difference. Your stories will ensure that our submission remains a living, breathing document which cannot be simply ignored or discarded by politicians and bureaucrats.

Finally, it goes without saying that your participation in this process will ensure that not only is the voice of the Duchenne and Becker community in Australia heard loudly by those in power, but more broadly, your participation will positively contribute to a reshaping of the rare diseases landscape – to the potential benefit of many hundreds of thousands of people.

The 4 Terms of Reference for the Parliamentary Inquiry are listed below. Please tailor your story with these Terms of Reference in mind and try to include comments on what works, what isn’t working, what you wish to recommend to policymakers, and what a more streamlined and less bureaucratic regulatory process would mean to you and your loved ones.

Parliamentary Inquiry Terms of Reference

  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.

For more information please contact the SOSDF Advocacy Officer, Lance Dale, at lance@saveoursons.org.au or on (02) 9554 6111.

Please support us in representing you by becoming involved in our submission-making process.