RARE DISEASES & CONDITIONS: help needed in Australia
The following letter will be sent with the petition to the Federal Health Minister
Dear Minister Butler,
Individual rare diseases are uncommon, but collectively, they represent a massive national health crisis. 2 million Australians live with a rare disease or disorder.
The Diabetes Comparison (The Scale)
- The Paradox: If every Australian with a rare condition had the same disease, they would outnumber the entire Australian diabetes population (1.5 million).
- The Funding Gap: Diabetes receives massive federal funding, dedicated research pipelines, and global attention. Rare disease patients receive virtually nothing, leaving 2 million people fractured and isolated.
The Pharmaceutical Trap: Repurposed Drugs
- Because these diseases are rare, drug companies have zero financial incentive to develop targeted cures.
- Patients are forced to take heavy, high-risk, repurposed medications (such as epilepsy drugs or heavy sedatives) designed for completely different conditions.
- These drugs often offer little to no relief, but carry catastrophic, life-altering side effects, meaning only the drug companies win.
Why Are Those with Rare Conditions Invisible? (The “Code” System)
- The Australian healthcare system tracks funding using medical classification codes.
- Many rare diseases do not have their own unique codes; they are dumped into generic “catch-all” categories.
- The Result: On government databases, these patients literally do not exist. Because the government doesn’t count them, the medical system doesn’t find them.
The Goal
We are not looking for immediate remedies to this situation. We are looking for the Federal Government to make it easier for researchers to find us, and for the Federal Government to at least see us when funding decisions are being made.
This can be done using ORPHACODES – recognised worldwide as the most accurate way to trace low-prevalence illnesses and conditions. Used in Europe, it currently covers 6,500 conditions not captured in our medical coding system. It is even capable of recording undiagnosed conditions.
The Australian Charter of Healthcare Rights includes many items that become redundant to those whose conditions go unrecognised within the system. How for instance, can you provide services and treatments that meet my needs, when you officially do not acknowledge I have a rare condition? When staff have never heard of the condition? When the condition is invisible?
We look forward to you addressing this issue affecting 2,000,000 of your fellow Australians as soon as practicable.
THIS PETITION WAS INSPIRED BY THE PUBLIC EDUCATION EFFORTS OF THE ADMIN AND MEMBERS OF THE AUSTRALIAN FACEBOOK GROUP, THE ORTHOSTATIC TREMOR SUPPORT NETWORK.
This story gives more details on this condition.
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