Women’s Federation of Hemophilia goes virtual in 2020
OK, so ‘world’ not ‘women’ … but at the WFH virtual summit this year women were woven throughout the agenda alongside the usual prophylaxis, quality of life and gene therapy talks.
WFH 2020 had 7000 delegates who negotiated the technical difficulties of the virtual world and were able to listen in, live or to recordings, over the six days of the event. There was much to learn and being able to do that from home or work was certainly useful – no jet lag, but sadly no airmiles or face-to-face networking either. The WFH planning committee thought it went well even though it wasn’t a ‘normal’ meeting. I hope you managed to see some of it, and that it has sparked your interest in thinking about presenting at WFH2022 in Montreal, by which time we will have ‘fixed’ severe haemophilia with emi and/or gene therapy and will think more about less well understood patients and bleeding issues.
Of course, gene therapy is coming (has been for a while – but is almost here) and that is really important for a group of adults with severe haemophilia, assuming it gets a commercial license and that we can afford to pay for it. There was much discussion about follow up and how quality of life would be assessed, which even included a few views of patients who had had it or were thinking about it; it won’t all be trough levels and numbers of bleeds that’s for sure. How we, as haemophilia nurses will adapt to this new level of haemophilia care was discussed in the nursing sessions – less severe haemophilia reviews, giving more time to focus on those with less severe and/or rare bleeding disorders including women. Check out this publication by our very own women’s expert – part of the state of the art for WFH
Guelcher CJ, Chase J, Pollard D. Women and girls with heavy menstrual bleeding and inherited bleeding disorders: A call to action for the Haemophilia Treatment Centre Nurse. Haemophilia. 2020 May 29. doi: 10.1111/hae.14019
Women are definitely the new hot topic. Given that an estimated 2-5 females are affected per male with haemophilia there are lots of women out there with mild haemophilia (more than 2,500 in the 2018 UKHDCO annual report) as well as those with other bleeding disorders. At WFH there were no less than FIVE sessions about female bleeding problems – whole sessions or sections within sessions such as during the nursing symposia, as well as many posters. With Cathy Harrison’s work on period poverty, the UKHCDO register and the Haemophilia Society’s Talking Red project we should be set to change the way girls and women are served by the UK bleeding disorders community.
Haemnet is playing its part too. We are this week launching the Cinderella study, an exploration of the lived experience of women who bleed that aims to identify unmet medical need by means of social media-based surveys and regional focus groups. We aim to bring this to treaters for discussion later this year – so watch this space and help with participation in the surveys by sharing these details with people who bleed and who may have affected family members: https://haemnet.typeform.com/to/uWufTI