Monday, 24 June 2013
Private Members' Business
I rise to add my support to the member for Shortland's motion to raise awareness about the challenges facing those people in Australia suffering from rare diseases. What many Australians may not realise is that approximately 1.5 million Australians, or 10 per cent of our population, suffer from one of 8,000 rare diseases. In Australia every single rare disease is represented within our population, and for these 1.5 million Australians the future is looking extremely bleak.
Unlike those Australians who suffer from more common diseases, rare diseases are not only not commonly known by the general public but they are also not well understood by the medical fraternity. Rare diseases are difficult to diagnose and the average time to—
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Rare diseases are difficult to diagnose, and the average time to diagnose a condition is 10 years. This is compounded by the lack of medical specialist consultants. Many general practitioners are left to attempt to navigate the murky waters of rare diseases, making guesses as to the cause of the symptoms and their association with the rare disease. There are so few of these cases that there is little opportunity for medical advancement towards recognising the causes, developing cures or understanding the implications for the individual. For those suffering from a rare disease that is understood, there remains little or no support from governments and communities to help them cover the exorbitant costs of medications.
Australia is some 30 years behind the rest of the world in a healthy policy in this area. We are the only country without a national plan or register for individuals suffering from rare diseases. It is little wonder, then, that these individuals feel isolated or let down by their own government. Some countries have legislated to recognise rare diseases and provide treatment for citizens. For example, the United States has enshrined into law the Orphan Drugs Act, which grants special status to a product to treat a rare disease.
As we know, the treatments for rare diseases are often complex, and many rare diseases do not have a medically accepted adequate treatment. It is time that Australia catches up with the rest of the world and begins to take appropriate care for the 1.5 million Australians who live with a rare disease. It is time that we have a national register and a national plan for rare diseases. It is time that we plan to ensure that individuals living with rare diseases have access to the very best medical care as well as the best emerging treatments, such as the opportunity to be involved in national and international clinical trials.
It is for these reasons that I would like to commend Rare Voices Australia. Rare Voices Australia is the first national organisation that has been advocating for individuals living with a rare disease. Rare Voices Australia works not only with government but also the research community, medical physicians and the broader public to raise awareness about rare diseases and to fight for better outcomes for those suffering from them. Rare Voices Australia provide a support network for families, friends and carers of those with a rare disease and work hard to improve the quality of life for sufferers and those around them. It is due to the work of Rare Voices Australia that the key policy makers in parliament are beginning to understand the plight of individuals living with a rare disease and searching for better ways for our health system to accommodate them.
Part of the challenges that we as policy makers face is identifying ways to encourage the development of life-saving drugs to treat rare diseases. Unfortunately, many of these vital medications do not have the investment of time or research, simply because they do not have the critical mass of support, due to the limited number of individuals with the disease throughout the world. These medications, commonly called 'orphan drugs', are not cost-viable to pharmaceutical companies and require additional support to ensure they continue through development and testing. The difference, however, that these medications can make in the lives of those with rare diseases is incredible. In order to support the development of these medications, and encourage the availability to individuals with rare diseases, the Orphan Drug Program was established in 1998. It is a long, arduous process for medications to be made available under this program.
I hope that Australia is proactive in looking at some of the solutions and optional treatments for those living with rare diseases so that they may enjoy the same quality of life that we take for granted on a daily basis. Often, it is not until we know someone with a rare disease that we have an understanding of the challenges they face, their families face and often siblings—brothers or sisters—with a rare disease face. I commend the motion of the member for Shortland.