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Announcement on the Clinical Commissioning Policy: Vonicog alfa for the treatment and prevention of bleeding in adults with von Willebrand disease

We are delighted to announce that the NHS England Specialised Commissioning Directorate have approved Veyvondi (Vonicog alfa) for the treatment and prevention of bleeding in adults with von Willebrand disease.

Vonicog alfa will be routinely commissioned for treatment of haemorrhage and surgical bleeding, and prevention of surgical bleeding, in adults (aged 18 years or older) with a confirmed diagnosis of VWD, in the following circumstances:

  • when desmopressin with or without tranexamic acid treatment is ineffective or not indicated (based on UK clinical practice); AND
  • when VWF activity levels are less than50 IU/dl OR diagnosis is type 2N VWD; AND
  • there is no evidence of inhibitors to VWF.

This is the first synthetic von Willebrand factor replacement that will be available for people with von Willebrand disease who require replacement factor for surgical and emergency procedures.

This decision signifies important progress for The Haemophilia Society’s long-standing campaign for ‘Recombinant for All’ and is particularly timely with the Public Inquiry into Infected Blood sitting this week, and highlights that we are still striving to ensure that the best treatments are available for everyone living with a bleeding disorder.

Jo Traunter, Haemophilia Society UK Trustee said:

The Haemophilia Society welcomes the announcement by NHS England that the first recombinant treatment for serious forms of von Willebrand disease has now been licensed.

It is a significant development in access to treatment and shows that our successful ‘Recombinant for All campaign’ which started almost 20 years ago is just as important for our community today.

Research suggests that as many as 9 out of 10 people with VWD have not been diagnosed.1  Their bleeding symptoms may be mild and it’s not until the blood has difficulty forming a clot either due to injury or during surgery that the condition is picked up and diagnosed.

It is vital that we continue to raise awareness of this condition and its symptoms and ensure the voice of our community is heard.

We would at this time like to thank all our members who took part in the VWD survey in 2019 and who gave us feedback. It is the power of your voice that made this happen.

You can read the full commissioning policy here

[Reference: 1. World Federation of Hemophilia [Internet]. Von Willebrand Initiative Program. Available at: https://www.wfh.org/en/our-work-global/vwd-initiative-program. [Last accessed July 2020].

Jess Milton

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