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Updated: Sep 29, 2025

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Preparing for tomorrow: Defining a future agenda.

Brian O'Mahony1,2, Olivier Wong2,3, Hermann Eichler2,4

  • 1Irish Haemophilia Society Ltd, Dublin, Ireland.

Haemophilia : the Official Journal of the World Federation of Hemophilia
|March 23, 2022
PubMed
Summary
This summary is machine-generated.

Gene therapy offers a potential cure for hemophilia but requires flexible value frameworks, health technology assessment (HTA), and payment models for widespread adoption. Enhanced collaboration among stakeholders is crucial for successful implementation of this innovative treatment.

Keywords:
gene therapyhaemophiliahealth technology assessmentpaymentvalue

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Area of Science:

  • Biotechnology
  • Hematology
  • Health Economics

Background:

  • Gene therapy represents a potential functional cure for hemophilia.
  • This single-dose treatment presents uncertainties regarding factor expression impact and duration.

Purpose of the Study:

  • To outline a framework for adopting gene therapy for hemophilia.
  • To highlight the need for adaptable value frameworks, health technology assessment (HTA) methodologies, and innovative payment models.
  • To emphasize enhanced stakeholder collaboration for transparent decision-making.

Main Methods:

  • Review of considerations for a gene therapy 'toolkit'.
  • Application of presented tools within a framework for stakeholder requirements.
  • Illustrative example of alternative payment model features.

Main Results:

  • Flexibility in value frameworks, HTA, and payment models is essential for gene therapy adoption.
  • Enhanced stakeholder engagement is critical for optimizing value assessment and HTA.
  • Innovative payment models require receptivity and careful consideration.

Conclusions:

  • A collaborative, adaptable approach is necessary for implementing gene therapy in hemophilia care.
  • The proposed framework and toolkit can guide decision-making for novel treatment modalities.
  • Understanding alternative payment models is key to healthcare system integration.