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PRIVATE MEMBERS’ BUSINESS: Rare Diseases

24 June 2013

 

Mr ALEXANDER (Bennelong) (20:23): A rare disease is a highly uncommon condition which individually affects fewer than one in 2,000 Australians. However, collectively these diseases affect between six and eight per cent of the Australian population and damage the livelihoods of patients, their families and the community at large.

I thank the member for Shortland for bringing forward this motion; however, discussion on this issue must recognise that the federal government has failed to provide relief for the thousands of Australians suffering from chronic and debilitating rare diseases. Changes to the Life Saving Drugs Program have made it increasingly difficult for potentially life-saving drugs to satisfy the listing criteria for the Pharmaceutical Benefits Scheme. These changes have put crucial treatments, which can cost up to half a million dollars per year, further out of reach for most Australians. The strictness of this new program has been heavily criticised by health professionals. Despite this, the changes continue to deprive patients of access.

National plans for addressing rare diseases are already in place in many countries around the world. Australia can draw on significant overseas experience, particularly in Europe, where national rare disease plans exist in 11 countries and are in development in all other EU member states. Indeed, Australia is currently trailing well behind these nations in our support of rare disease patients and their families. The member for Shortland has flagged the need to promote medical research progress in the field of rare diseases.

Investing in the benefits of a national rare disease registry in Australia would provide an important step forward in the way the government deals with rare diseases. A national registry could provide vital support networks for patients and specialists of rare diseases. It would help connect specialists in Australia with those around the world and facilitate the exchange of knowledge and expertise. It would encourage the development of guidelines and referral networks designed to help patients receive timely diagnosis and the right care for their condition.

Australia’s current approach to rare disease management has failed to encourage early diagnosis of many chronic conditions. Diagnoses of rare diseases can take up to 10 years in some cases, meaning by the time of accurate diagnosis, the patient’s disease is well advanced and often more difficult to manage. To address this critical issue the government should broaden the scope of its investigation and begin measuring the benefits of strategies such as compulsory population screening for newborns. This would encourage early diagnosis of rare diseases and ensure that patients have access to effective and timely treatment. Currently, undiagnosed rare diseases result in the chronic debilitation of patients and significantly burden public health in Australia. Early detection and treatment can often stall the onset of debilitating symptoms.

Population screening may well deliver significant cost savings to the community by avoiding this public health burden. Other initiatives in this area could help address the lack of access to care and support for patients by tackling low awareness of rare diseases and the fragmented provision of services in this field. New strategies could help to ensure that more rare disease patients receive the right care, and that government resources are being used effectively. Indeed, in September last year, my colleague the member for Goldstein criticised the current government’s ineffective response to rare diseases and continuing deferral of access to medical treatment for patients. He blamed the government’s financial mismanagement for putting life-saving treatments further out of reach for Australians suffering from rare conditions. Yet despite this government’s failure, advocates and businesses around the country and the community at large continue to do great things for patients suffering from rare diseases.

I praise the efforts of several companies in my own electorate of Bennelong for the incredible work they do in this field. Companies such as Genzyme, who have pioneered the development and delivery of transformative therapies for patients affected by rare and debilitating diseases for over 30 years, continue to advocate for the recognition of rare diseases and the implementation of policies to facilitate better treatment and support. I acknowledge the efforts of these groups and encourage this government to broaden the scope of its investigation into avenues for addressing rare disease management in Australia. Only by investigating all the available options can we begin to truly begin to alleviate the suffering of thousands of Australians and their families and provide the support they deserve.

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