World Hemophilia Day – ‘Adapting to change: sustaining care in a new world’

World Hemophilia Day 2021

 

The theme of this year’s World Hemophilia Day is ‘Adapting to change: sustaining care in a new world’ and recognises the challenges faced by healthcare providers, carers and patients by the COVID-19 pandemic. The event was inaugurated by the World Federation of Hemophilia in 1989, but encompasses all members of the bleeding disorders community, such as people with von Willebrand disease and other rare clotting factor deficiencies.

The focus on adaptability and sustainability follows on from advice issued last year by WFH to people with haemophilia (PWH) about what actions they should and should not take during the pandemic. The recommendations addressed topics including COVID-19 and different treatment types, those patients in or about to be enrolled in clinical trials, measures to reduce exposure to SARS-CoV-2 (the virus that causes COVID-19) and specific actions to be taken during hospitalisation.[1]

In addition, the WFH has issued guidance in conjunction with a number of other organisations on COVID-19 vaccination programs for people with bleeding disorders.[2] The guidance places emphasis on the importance of haemophilia treatment centres taking action to inform people with bleeding disorders about the COVID-19 vaccines available to them and therefore helping to contribute to the effectiveness of their national vaccination programs.

Porterhouse has worked in haemophilia since the company’s foundation in 2002 and has seen the many changes to the field and community, including the development of new therapies that have enhanced the lives of patients and given treaters a more extensive armamentarium with which to fight the condition. Many challenges remain, including underdiagnosis and undertreatment, and the COVID-19 pandemic will have exacerbated these areas. However, it is hoped that the flexibility and adaptability shown by the community will quickly allow us to return to pre-COVID and indeed improving levels of care for all PWH when the pandemic is brought under control.

 

  1. World Federation of Hemophilia. COVID-19: Practical recommendations for people with hemophilia Available at https://news.wfh.org/covid-19-coronavirus-disease-2019-pandemic-caused-by-sars-cov-2-practical-recommendations-for-hemophilia-patients/. Accessed 12 April 2021
  2. World Federation of Hemophilia. COVID-19 vaccination guidance for people with bleeding disorders. Available at https://news.wfh.org/covid-19-vaccination-guidance-for-people-with-bleeding-disorders/. Accessed 12 April 2021