Danny Hsu: Improving TTP Diagnosis Through Expanded ADAMTS13 Access
Danny Hsu, President of THANZ, Director of Therapeutic Apheresis, Immune and Obstetric Haematology at South Western Sydney Local Health District, shared a post on LinkedIn:
“A major milestone for TTP diagnostics in Australia—but our work isn’t finished yet.
I want to extend a massive congratulations to the The Royal College of Pathologists of Australasia (RCPA) for their successful application to secure MBS funding for ADAMTS13 testing in Australia.
Thrombotic Thrombocytopenic Purpura (TTP) is a devastating and rapidly progressive microangiopathy.
Having timely access to accurate diagnostics is quite literally the difference between life and death. The Medical Services Advisory Committee (MSAC) has now supported crucial new MBS items that will cover the entire diagnostic pathway for patients suspected of having TTP, including:
- ADAMTS13 activity testing to rapidly confirm or exclude severe deficiency.
- Autoantibody testing to distinguish immune-mediated TTP from congenital forms.
- Genetic testing for suspected congenital TTP.
- Targeted familial testing, which is an absolute game-changer for counseling and anticipatory management before high-risk situations like pregnancy.
These approvals will ensure patients are directed to the correct, life-saving treatments immediately—whether that means urgent plasma exchange for immune-mediated TTP or enzyme replacement for congenital TTP.
However, we must also acknowledge a mild but significant disappointment.
While the diagnostic pathway has been supported, MSAC did not approve funding for the routine monitoring of ADAMTS13 activity during clinical remission.
For those of us managing these complex patients, we know that capturing a serological relapse before it becomes a clinical emergency is paramount.
While we acknowledge MSAC’s position that the current formal evidence does not yet perfectly map out cost-effectiveness or precise testing intervals, routine monitoring is a standard of care widely practiced by TMA experts globally.
Why? Because early detection of an impending relapse allows us to intervene proactively.
This approach can prevent traumatic and costly hospital and ICU admissions, and crucially, it helps protect our patients from irreversible, chronic end-organ dysfunction.
The MBS widely funds molecular monitoring for CML (typically every 3 to 6 months).
The system completely accepts that preventing a blast crisis is far more cost-effective—and ethically imperative—than treating one in the ICU.
The prevalence of acquired TTP is 10-15 per million vs 100-150 per million for CML.
This partial approval is a fantastic leap forward for rare disease equity in Australia, and the RCPA deserves immense credit.
However, it also serves as a reminder that we must continue to build the evidence base required to support comprehensive, long-term care for our rare disease patients.
We will keep advocating, researching, and pushing for the complete care our TTP patients deserve.”
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