Update 2020

Update from I.H.S. CEO | May 8, 2020


As we complete yet another week of lockdown, albeit with some light at the end of the tunnel with a plan for re-opening the country, we continue to engage with members individually and collectively. Our outreach co-ordinator Robert Flanagan has been in touch with many of you by phone. Please do contact us if you have any issues or concerns where you think we can provide information or support.

Earlier this week, we had a very interesting Zoom session with the physiotherapy team at the National Coagulation Centre. Physiotherapists Mark McGowan and Sheila Roche delivered a session on how to exercise and maintain fitness at this current time. For those of you who missed it, the presentation is available here.

Today an exercise class took place with the same physiotherapy team for a small group of adults with severe haemophilia. This was part of a 6 week exercise and lifestyle course which we were piloting with the NCC prior to Covid-19 and involved getting a small group together each week for 6 weeks to help develop a culture of better lifestyle and exercise options. The course was interrupted by Covid-19 but has now been re-started virtually. At the end of this course, we will assess the outcomes with the participants and the physiotherapy team and hopefully roll this programme out to additional groups of members

Supply of Haemophilia medications

The Haemophilia Product Selection and Monitoring Advisory Board (HPSMAB) met earlier this week by Zoom. There have been no problems reported with supply of any medications for people with haemophilia or other inherited bleeding disorders and this is being constantly monitored. We are indeed fortunate that we had a good home delivery system established for clotting factors and other haemophilia medications prior to Covid-19. Many countries did not have this and they have been scrambling to set up a home delivery service in the midst of this pandemic.

The European Commission and European Centres for Disease Control issued new guidelines this week on essential substances of human origin. This list of substances, after advocacy from the patient community including our community, now includes plasma for manufacture which is used to manufacture plasma derived factor concentrates. These remain the mainstay of treatment here for those with von Willebrands disorder and many rare bleeding disorders.