Rob Mitchell (McEwen, Australian Labor Party) Share this | Hansard source

Tonight I rise to acknowledge the work of the Marfan Association of Victoria in increasing awareness of Marfan syndrome and the work it does in advocating for Australians living with this rare disorder. Marfan syndrome is a rare genetic disorder that affects connective tissue. Marfan affects an estimated one in 5,000 people and half of those people would not know they have it. At least 90 per cent of Marfan cases have potentially life-threatening cardiac involvement in varying degrees.

The Marfan Association of Victoria was established in 1997 and is made up of volunteers who have all been directly affected by Marfan syndrome. I first came into contact with the association after the death of my brother Jason. People likely Sally, Kate, Roslyn, Justin and every other member I have conversed with at the Marfan Association have made understanding why and dealing with loss so much easier. This organisation obviously has a special place in my heart, and I congratulate the Marfan Association of Victoria on its most recent and successful panel session at the AGM held in Chadstone last Sunday.

The panel session on surgery allowed members the opportunity to understand the pre, during and post recovery experience shared by other members of the organisation. This is where the all-important role of organisations like the Marfan Association of Victoria come to the fore. These organisations are strong advocates for everyone affected by rare genetic diseases, illnesses and disorders. They work tirelessly to advance research for treatments to save lives and enhance the quality of life for people affected by these disorders. They provide supportive communities for everyone—from the person affected directly by a disorder to the families and carers who also experience the health journey. When breakthroughs and advances are made, it is these organisations that spread the latest news and most accurate information and that educate everyone from patients and their families to medical professionals and the general public.

The importance of medical research into rare, genetic diseases cannot be understated. Parliament passed a bill creating the Medical Research Future Fund in August this year. The idea of having a future fund for medical research is fantastic. It has the potential to strengthen Australia's position as a global leader in medical research. Unfortunately, the version of the future fund the Liberal government rushed through failed to include a number of the recommendations from the McKeon Strategic Review of Health and Medical Research—a missed opportunity. It could have been because the landmark review was commissioned by Labor, but you would hate to think that politics got in the way of providing Australians with the benefits of advanced medical research. As I said before, it really was a missed opportunity.

The future fund is expected to provide financial support for medical research and innovation. Given the future fund was a signature policy announcement of the Liberal government before the last budget, and was rushed through by securing the support of the Greens, you would think that the work to establish a transparent and robust structure to support the future fund would have been ready to go as soon as the bill was passed. But the future fund has not yet provided funds to any medical research or projects. What is the hold up? The Australian Medical Research Advisory Board, one of the key governance structures of the future fund, has not been established and there is no real indication of when the advisory board will be in place. The Department of Health's last update on this was in August and referred to an announcement being made 'shortly'. So the answer to stakeholders on when the future fund will be up and running is: how long is a piece of string?

There is also confusion, and I use the term loosely, about how money will be disbursed from the future fund. The bill provides that the minister may delegate their responsibility for funding to institutions. But in the absence of a formal instrument of delegation or an agreed arm's length distribution process, it leaves the issue open to suggestion that 'pet projects' could be funded. This could be avoided by strengthening the role of the existing National Health and Medical Research Council. The NHMRC is a fantastic organisation with an international reputation. It has been instrumental in guiding Australia's medical research agenda and ensuring high-quality outcomes for more than 80 years. The NHMRC is an organisation that advocates like the Marfan association would trust when it came to disbursement of funds for medical research.

Labor commissioned the McKeon review, which provided a 10-year road map showing how health and medical research can be supported. The future fund arrangement in no way reflects that vision. On behalf of organisations like the Marfan Association of Victoria, I call on the Minister for Health to actually do something, help Australians by making medical research a priority and to get the future fund working.

See this speech in context