Hang Le: Singapore Study Reinforces the Need to Tackle the ”Resilience Burden” in Haemophilia
Hang Le, Chapter Lead in Patient Access and Policy at Roche, shared on LinkedIn:
”An abstract from the Singapore Society of Haematology Conference by Dr. Cheryl Lim and the National University Hospital (NUH) haemophilia team caught my attention over the weekend.
Their findings closely echo those of the white paper launched by the Haemophilia Society of Singapore (HSS) two months ago!
Dr Lim’s study examined the psychosocial, behavioural and contextual aspects of adult haemophilia patients transitioning from on-demand therapy to prophylaxis, driven by the onset of new government subsidies of factor-replacement treatments – a massive win for patient access.
However, the research highlights an important issue: financial access is only part of the equation.
Even with the clinical benefits of regular prophylaxis, patients continue to grapple with high treatment fatigue and the ongoing, invisible burden of therapy.
When you quantify this burden, it is easy to understand why.
Even on extended half-life treatments, a Haemophilia A patient on prophylaxis requires approximately 100 intravenous infusions a year.
This perfectly underscores the ‘Resilience Burden’ that the HSS community recently brought to the forefront with their white paper.
Evolving rare disease care requires us to look beyond mere clinical metrics and standard financial models.
To help patients achieve the ‘haemophilia-free mind’ they aspire to, support must also tackle the behavioural and psychosocial levers of long-term prophylactic adherence.
Kudos to Dr. Lim and her team for this vital, patient-centric research!
Learn more:
- Abstract A-129 by Dr Cheryl Lim et al.
- Living With Haemophilia in Singapore report by HSS”
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