Many of you are understandably concerned about the spread of coronavirus. There is no evidence that people with a bleeding disorder are any more likely to catch the virus than the general population but it is important to continue to follow the latest advice on minimising the chances of catching
HEALTHCARE
NHS England decisions on new treatments for bleeding disorders
The first artificially made treatment for people with severe types of von Willebrand disease (VWD) has been refused funding by NHS England. This means that people with VWD who need factor cover during surgery or for bleeding complications must continue to rely on plasma-based treatment. Last month, NHS England’s Clinical
Organ donation rules in England are changing
Organ donation in England will move to an “opt out” system from May 2020. This means that all adults in England will be considered to have agreed to be an organ donor when they die unless they have recorded a decision not to donate or are in one of the
Scotland step closer to becoming first country in world to make sanitary products free for all women
Last month we welcomed a new scheme that allows schools and colleges in England to order free period products for students as part of a government scheme to tackle period poverty. Today it has been announced that Scotland is on the path to become the first country in the world
Response from NHSBT regarding Corona Virus and blood safety
We understand that our members may have concerns about blood and blood product safety and the new Corona virus (now named SARS-CoV-2 which causes COVID-19 disease). We contacted the NHS Blood and Transplant service (NHSBT) for up to date information on this matter. They stated: NHSBT is monitoring the coronavirus
Want to share your experience of living with, or caring for children with haemophilia A?
We are working with Roche Products Limited and Chugai Pharma UK Ltd to help recruit people to take part in a focus group about living with haemophilia A. Roche and Chugai are looking to arrange a focus group consisting of people living with haemophilia A, or those caring for children
Could you help with a study about your experiences of haemophilia A?
We are working with a market research agency specialising in healthcare and medical/pharmaceutical market research. They are currently working on a study for a pharmaceutical company who develop treatments for haemophilia A. We are helping them to recruit participants for this research and would like to ask for your support.
Roche/Chugai statement regarding particles in vials of Hemlibra®▼ (emicizumab)
During a routine examination of drug product batches, as part of our quality assurance systems and processes, hardly visible, translucent particles were identified in Hemlibra (emicizumab), outside our particle specification. These particles are inherent to the drug product and based on toxicology and safety assessments and review of available data,
Call for feedback from patients with von Willebrand Disease
NHS England is considering evidence which could lead to the commissioning of a new treatment for adults with Von Willebrand Disease. NHS England believes it has seen enough research from NICE (the National Institute for Health and Care Excellence) to consider making vonicog alpha routinely available and is now looking
BBC2 documentary on vCJD
Following last night’s BBC2 documentary on vCJD – Mad Cow Disease: The Great British Beef Scandal – we are seeking advice on what this means for our community, and we will share any information with you as soon as possible. The documentary aired on BBC2 last night at 9pm. You