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New hope for Victorians with rare diseases

Rare and difficult to identify diseases can be scary and distressing for sufferers and their families.

Diagnosis of rare diseases can be delayed which means treatment is often delayed, leaving people suffering debilitating outcomes and feeling a lack of control about their illness.

The Liberal Nationals will provide $1 million to improve education and awareness of rare diseases so Victorians can receive earlier diagnosis with quicker and more effective treatment, getting back in control of their health and getting back on the road to recovery faster.

Approximately 500,000 Victorians are or have been affected by rare diseases and are living with often debilitating health conditions that have proven difficult to diagnose due to the condition’s rarity, a lack of known tests, or a lack of knowledge from medical professionals.

This funding will give people an opportunity to tell their stories, give doctors a say about what additional information and support they need and to commence a detailed education and awareness campaign.

It is vital we intervene earlier to improve outcomes and manage these debilitating diseases more effectively to improve the treatment and quality of life for Victorians with rare diseases.

Some of these diseases are very rare, while others are relatively common but notoriously difficult to diagnose.

For example, there’s still debate about the existence of Lyme-like illnesses in Australia and Fibromyalgia affects up to 2% of the population but has no known specific test.

The Buruli Ulcer is relatively rare but is becoming more common every year with a further 40% increase in diagnosis so far this year.
In 2017/18 there were 295 cases of Buruli Ulcer in Victoria – concerningly, at least 111 of which were on the Mornington Peninsula.

There is currently $33 million for further research and clinical trials into rare diseases, including $3.9m from the Federal Liberal government for the Buruli Ulcer, the outcomes of which will be incorporated into this work.

Comments attributable to the Shadow Minister for Health, Mary Wooldridge:

“People living with rare or difficult to diagnose health conditions live with uncertainty, confusion and frustration which eventually impacts almost every aspect of their lives.

“The Liberal Nationals are committed to helping Victorians with rare diseases get back in control of their health through greater awareness, earlier diagnosis and improved treatment.

Comments attributable to Russell Joseph, Liberal Candidate for Nepean:

“Too many families on the Peninsula have been dramatically affected by Buruli Ulcer with diagnosis and treatment often delayed as medical professionals and the broader community are unfamiliar with the early symptoms or even how to minimise their risk of infection.

“While the research into the Ulcer continues, this public education campaign about the disease will ensure locals and visitors are being diagnosed early and treated more effectively for this horrific disease.”

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